How to hack your health

I thought I would have to live with an unusual medical condition for life. However, using the method I describe in this post, I found the one surgeon in the world who could help me.


For a little over four years, I have had a paralyzed left hemi-diaphragm. The result is reduced lung capacity (down by about 1/3), particularly on exertion. Until about six months ago, I thought I would live with this for the rest of my life. Many people live with much worse, of course, but this condition made it hard to do the very things I was trying to do to live a more healthy life, such as bicycling and weight-lifting.

Some medical conditions are more unusual than others

Being both an inquisitive geek and a bit of a hypochondriac, I dug into this problem as I would any other. What I learned about the current state of health care for unusual conditions was eye-opening, and I want to share those lessons here.

If you have a somewhat unusual medical condition, I am going to tell you exactly how to get the best health care you can from the current system. I think you’ll agree that what I discovered isn’t exactly intuitive. I hope you will find that some or all of what I describe is useful to you as well.

The first part of this post gives some background as to my personal story and how I came to need the information in this post. If you’d like to skip directly to the “how to,” click here.

No bad guys

It's better to have a common problem

I am not out to bash the health care system or any particular part of it. Heck, I’m married to a doctor, and I have many friends in health care. (So do you—they represent about 11.5% of the workforce.) It’s my experience that these are wonderful professionals doing the best—often extraordinary—jobs they can do under difficult circumstances.

It’s simply the fact of the matter that most health care professionals spend most of their time dealing with relatively routine issues. Talk to them about high blood pressure or diabetes, and you’ll be getting the benefit of 100s or 1000s of cases that they’ve treated in their careers.

However, ask them about your paralyzed left hemi-diaphragm, and…

The diagnosis

I “presented” with reduced breath sounds in my lower left lung and severe pain in my left upper back and shoulder. After shrugging it off for a few days, I saw my general practitioner, a family practice doc at a very large university medical center.

He diagnosed pneumonia, prescribed an antibiotic, and sent me for a chest x-ray.

Radiology looked at my chest x-ray and said they wanted another film with me lying down.

Given the new x-rays, my GP now diagnosed me with a pleural effusion (fluid outside one’s lungs, where pneumonia is fluid inside). Sent me home to essentially ride it out.

After 7-10 days, not much had changed, so GP sends me to a pulmonologist. The pulmonologist takes my history, then speculates that I have a paralyzed diaphragm. He sends me downstairs to radiology, where I have a simple “sniff test,” which confirms that, indeed, the left half of my diaphragm is not moving.

Each phrenic nerve innervates one-half of the diaphragm.

What to do? “I have no idea,” says the pulmonologist. He mentions a procedure called a plication, and sends me on my way.

The consultations

Over the next several months, I discuss my condition with a number of doctors, with the following results:

General practitioner: there’s nothing to be done.

Pulmonologist at university medical center: looks up “paralyzed diaphragm” in Wikipedia while I’m in exam room. No joke. (I did not pay for this visit.)

Friend who is top-notch pediatric neurosurgeon: nothing to be done but plication, see this general thoracic surgeon, best around.

Sometimes one opinion is enough.

Friend who is top-notch adult neurosurgeon: nothing to be done, but see this pulmonologist, best around.

Best general thoracic surgeon: we can plicate your left hemi-diaphragm. It won’t fix anything, but will stop the diaphragm from impinging upwards into your left lung.

(In the middle of all this, they find a cyst on my pancreas, which leads me to oncology, but that’s another story–with a happy ending.)

Best pulmonologist: nothing to be done, but do these breathing exercises, they may help strengthen your “accessory” breathing muscles to make up for the lack of diaphragm action on the left side. Oh, and don’t do the plication. (This turns out to be good advice.)

My conclusions

After hearing lots of advice from lots of doctors, I independently come to the following conclusions:

  • the problem is with my nerve, I should not go messing with my diaphragm (no plication)
  • surgeons repair nerves all the time; in fact, I had a nerve repaired when I cut my head open once; surely there is a way to actually fix my phrenic nerve

Note that these conclusions were almost the exact opposite of what I was told by every doctor I consulted. It is not easy to go against all that expert advice, though it helps to be somewhat smug and pig-headed (or so says my wife).

I essentially decided to keep researching until I found a method or a person that could actually repair my broken/damaged phrenic nerve.

But how?

Here’s the “how to” part of this post, finally.

How to

Step 1: discover all the possible names and descriptions for your problem

In my case, the first phrase I heard was “paralyzed left hemi-diaphragm.” But there were others. My full list included:

  • paralyzed hemi-diaphragm
  • diaphragmatic paralysis
  • diaphragmatic palsy
  • phrenic nerve palsy
  • Parsonage-Turner Syndrome (refers more to the pain in my arm/chest/shoulder, but this term was used by one of the pulmonologists I saw)

To build this list (and it’s critical), Googling will help, but be sure to ask every doctor you see for his or her description of the problem. Read your doctor’s visit notes. There are idiosyncratic usages, and you want to discover them all.

Make a comprehensive list of all these terms. Include any related concepts, if any. For example, the phrenic nerve is often accidentally cut during heart surgery, so I might have included the keywords, “phrenic nerve heart surgery”. Vet the list with a doctor friend if you can, but err on the side of too broad a search, rather than too narrow.

Step Two – search the medical literature

Fortunately for us, your tax dollars really are at work here. The National Center for Biotechnology Information (NCBI) (part of the National Institutes of Health’s National Library of Medicine) has an online database, PubMed.gov, that is extensive, easy to search, and up-to-date.

PubMed is easy to search, but this will be the most time-consuming part of your research. You want to see if anything has already been published about your condition. (In the next step, you will set things up to continually monitor future publications.)

You are likely to find hundreds or thousands of articles about your condition, and there is no easy way to filter them–you’ll have to examine each one individually. You will probably only have to scan the article title, but this will still take some considerable time.

To get started, browse to PubMed.gov, enter the first of your search terms in the search box at the top of the page, and settle in for some reading. Your results will look something like this:

Repeat this process for each of the search terms you listed in Step One. If you are a search guru and want to use some of PubMed’s more advanced features, such as ORing your search terms together, it may save you some scanning time.

As you perform your searches, be sure to look at PubMed’s “Related searches” section on the right side of the results pages. You may find some search terms that are relevant to your search that you hadn’t identified by other means in Step One. Add any such new  terms to your list.

(Note: if you happen to find some interesting results here, you can at least temporarily skip right to Step Four and follow up. If this doesn’t lead to a definitive solution for you, come back here and continue.)

At first, the (often) arcane, (usually) verbose language of science will be challenging, but you will soon develop a heuristic filter that will eliminate the need to dig into most of the articles presented to you.

For example: since PubMed indexes both clinical and “bench science” articles, you will probably see a mix of basic research and more practical (for your purposes) clinical information. You will often be able to easily weed out the bench science articles because they will contain clue words in the article title, such as the names of genes (usually presented in all caps). E.g., if you see, “Role played by P2X and P2Y receptors in evoking the muscle chemoreflex,” you can tell by the names of the genes P2X and P2Y (they are usually capitalized) that this is basic research, and unlikely to be of any immediate relevance to you.

Abstracts will tell you what you need 95% of the time. You will get used to quickly scanning article abstracts for clues to the relevance of the article to your condition. In particular, skip to the “results” or “conclusions” section(s) of the abstract, if one or both of these exists. These summaries will often tell you all you need to know.

For example, here is the title and the Results and Conclusions sections of the article that led me to finding a possible solution for my problem:

Reinnervation of the paralyzed diaphragm: application of nerve surgery techniques following unilateral phrenic nerve injury.

“Results: Measures of postoperative improvement included pulmonary function testing, fluoroscopic sniff testing, and a standardized quality-of-life survey, from which it was determined that eight of nine patients who could be completely evaluated experienced improvements in diaphragmatic function.

“Conclusions: Based on the favorable results in this small series, we suggest expanding nerve reconstruction techniques to phrenic nerve injury treatment and propose an algorithm for treatment of unilateral phrenic nerve injury that may expand the current limitations in therapy.”

(If you’ve read this entire post, you can probably imagine my excitement upon seeing this article, several years into my research.)

Step Three – set up and monitor an on-going search of the medical literature

If you are unsuccessful in finding any already-published literature that addresses your condition in a way meaningful for you, you can set up an on-going search to monitor PubMed for you and send you the results on a regular schedule. This is how I found my solution, several years after my initial PubMed search.

PubCrawler is a tool for setting up this ongoing search. It was was developed and is hosted by Ken Wolfe’s lab in the Genetics Department, Trinity College Dublin, Ireland. The web site (as opposed to the search tool behind the scenes) was developed by, and is currently maintained by Karsten Hokamp, Ph.D.

Find PubCrawler at PubCrawler.ie.

Since I started my research, PubMed itself has added a tool that functions similarly to PubCrawler. It is accessed via PubMed’s “saved searches” functionality, available to you once you have created an account.

You may find PubMed’s functionality slightly easier to use than PubCrawler. However, since I used PubCrawler, I want to give them props here.

Create an account and set up your query(ies). Setting up queries in PubCrawler is a little different than you may be used to. Instead of simply typing keywords into a search box, you enter your search terms individually, and must connect those search terms with the logical keywords AND, OR, or NOT. In addition, each of these logical keywords can include parentheses.

It may take a bit of fiddling to get what you want, and there is not much in the way of help. To get you started, here’s how I created one of my searches. I wanted to wind up with the following logical statement:

(“phrenic nerve” OR diaphragm) AND (paralysis OR palsy)

The PubCrawler way to achieve this is:

PubCrawler uses a form-based search.

The “search field” can have many values, which map to search fields in PubMed. For our purposes, Title/Abstract is really the only one you need to use, at least to get started.

At the bottom of the search form, you must choose one of PubMed, PubMed Neighbours, Nucleotide, or Necleotide Neighbours. Choose PubMed.

If you need more search term rows, change the number in the “Terms” field and click Change! (There is no need to reduce the number of terms–unused rows will be ignored.)

After you save your query(ies), you will get the “dashboard” page of PubCrawler. From the dashboard, you can change a number of options, including how often your receive the results emails, how far back PubCrawler searches, etc.

One option that you may want to change is found in the “Parameters” section. The Relentrezdate parameter controls how far back PubCrawler searches for new “hits.” Since you just looked at all of PubMed to date in Step 2, you can set this parameter to 10 days. (Don’t set it to 5, otherwise, your weekly searches will only go back 5 days.)

That is all you need to do to get PubCrawler working for you. The current default is that queries are run some time on each Sunday, so you can expect to see a results email each Monday morning. Results emails will look something like this:

PubMed results, delivered to your inbox.

Each article in the results email is hyperlinked to its PubMed page, so one click will bring you to the same type of article page on PubMed that you are used to from Step 2. Use the same sort of scanning process you used in Step 2 to identify articles of interest. You will have a far smaller number of articles to scan each week than you did when you searched all of PubMed, because you are only getting results from the last week.

Step Four – follow up on promising leads

Once you find an article of interest, there are a couple of things you may want to do with the article:

  • read the full text of the article, for your own education
  • bring the article to the attention of your doctor
  • contact the author(s) of the article for more information, information on clinical trials, information about getting the treatment outlined, etc.

To read the full text of the article, or to get the full text of the article to bring to your doctor, you will have to find that full text. It may or may not be available online. PubMed has a great, short video on how to find the full text article.

You may also want to contact the author(s) of the article. This is generally quite easy, as the authors’ affiliations are almost always listed on the article page in PubMed. Sometimes, the email address of the appropriate author is listed there as well. This will usually put you in touch easily.

If no contact information is in PubMed, then you will just need to do a little Googling, using the name of the author and their affiliated institution. Or browse to the web site of the affiliated university, hospital, or clinic and search there. Or just call the affiliated institution. This step will likely be easy.

One small note: these articles will usually have multiple authors. It is usually the case that you’ll want to speak to the first author listed. If that leads to a dead end (if, for example, that person has left the affiliated institution, since articles are often published months or years after the fact), try the last listed author next. This will often be the senior person in the group, and that person is most likely to still be at the institution. If that doesn’t work either, just work your way through all the authors.

It’s all up to you now

From here, it’s up to you, your new contacts, and your doctors.

In my case, I spoke with Dr. Matthew Kaufman, who had innovated this new procedure, then discussed it with my doctors at home. Dr. Kaufman recently performed the surgery on me, which went very well. I am now in a waiting period to see if my nerve will regrow as we hope it will.

I was the 42nd person in the world to have this surgery. I would have preferred to have been the 420th person, but there was a downside to waiting. Had I not followed the procedure described here, I would probably not have found out about this surgeon and this procedure for years, if at all, and it might have been too late.

I hope this can help you as well.

710 Responses to “How to hack your health”

  1. Tom Robertson Says:

    Thanks for the insite. Last month I was told that my Phrenic nerve was not working my left dyaphragm. Dr found no trauma to my neck. I have been a firefighter for 29 years and have been exposed to smoke and other bad stuff. Right now we are waiting to see if the nerve regenerates. Is there breathing excercises I can do? Thanks

    • scrozier Says:

      Tom, I am *not* a doctor, so not qualified to give you advice. I will say that I saw a good pulmonologist, and he gave me exercises to do to strengthen my accessory breathing muscles to at least partially make up for the paralyzed side.

      Find a good pulmonologist.

      Also, I will send you, via private email, contact info for the surgeon who worked on my phrenic nerve.

      • Mary Says:

        I too have researched a lot online and though I have not yet seen a pulmonologist, my situation I know is a result of complications from previous surgeries, 1 year ago. Also, have been told that I just need to practice deep breathing! & that the other side will compensate! Curious to know if symptoms you had included great fatigue, bad dry cough and of course, the shortness of breath.
        I have been on Dr. Kaufman’s website and have followed the other posts about his patients. How long has it been since your surgery & have you seen more relief?

      • scrozier Says:

        Mary: no, I didn’t have great fatigue unless in the aftermath of something like walking up a steep hill, carrying something heavy, etc. No, no bad dry cough. Yes, shortness of breath. (I especially noticed the inability to “get a good deep breath” if I sneezed or otherwise tried to draw a deep breath.)

        It’s been 4 weeks since my surgery. I haven’t seen any relief, but due to my particular situation, I don’t expect to for many months. Essentially until my phrenic nerve can regenerate from the site of my nerve transfer down to my diaphragm.

        FWIW, I found Dr. Kaufman and his staff to be good sources of information about the condition. Since they’ve seen 40+ of these cases, they have a good set of experiences to draw on. I would give them a call. You may find some good information even if you don’t have surgery.

      • Mary Says:

        Thanks for your response. Need to confirm what I suspect & will certainly give Dr. Kaufman’s office a call to get further Information when necessary.

      • Chris Says:

        Can u send me contact info on the surgeon who helped you…my mom has this problem..it happened over three years ago after open heart surgery…I can’t stand seeing her this way..I want her to have her life back..thanks Chris

      • Steve Crozier Says:

        Chris, you can find info on Dr Kaufman, including contact info, here: https://www.looknatural.com/matthew-kaufman-md

  2. Brian Says:

    Was the surgery covered by insurance? Did you speak with any of Dr. Kaufman’s previous patients before having the procedure? I also want to thank you for your blog, when I found out my left diaphragm was paralyzed in Dec 2006 there was very little information out there, thank God for Dr. Kaufman’s efforts in this area, it gives people like us some hope that perhaps one day we can regain the use of our diaphragms.
    Brian

    • scrozier Says:

      Brian, yes, the surgery was covered by insurance. In fact, our plan gave us an out-of-network exception since there was no one in-network who could perform it.

      No, I didn’t speak with previous patients. I probably should have, but I got a good feeling for Dr. Kaufman and his staff when I went for a pre-op visit and testing, so I guess I didn’t feel the need for it.

      Good luck to you!

  3. Steve Mc Says:

    Thank you for starting this blog. I was just diagnosed with left diaphragm paralysis 2 weeks ago. I am glad to know I am not alone. It sure seemed that way when the doctors were all scratching their heads trying to figure out a cause. CT scan showed nothing and MRI was just done yesterday. I did not have any symptoms other than mild intermittent chest pain on my left side, which provoked me to finally go see my doctor. I will be following your post closely. The surgery sounds very interesting and hopeful. Good Luck to all of you. I share in your frustrations with this disorder.

    • scrozier Says:

      Good luck to you, Steve. Let me know if I can be helpful.

      • Steve McNally Says:

        Thanks, I do have a lot of questions. Just don’t know where to begin. I am still in the shock phase, since I just recently received this diagnosis. Trying to figure out the cause is what is driving me crazy. I have been sent to see a neurologist next, will see what they have to say.

      • scrozier Says:

        We never did figure out the cause of mine, and I guess I don’t really care…I just want it to get better!

        Good luck to you.

  4. jan bush Says:

    My husband just had surgery on Feb.17th. Dr. Kaufman decompressed and did transplant on the phrenic nerve. I,too, searched the internet for months and “thank God” found Dr. Kaufman. His problem started after shoulder surgery-the paravertebral nerve block damaged his right phrenic nerve. And yes, we were told by all doctors that you could get by on one lung. Was sent to doctor in different part of state to discuss plication. So glad he didn’t pursue that. His lung doctor knew 2 months after the surgery that he had right diaphragm paralysis but never told him. He discovered it by reading his medical records…I just mailed letters to his doctors with printed material from the website to inform them of this surgery and asking them to spread the word among the medical community….hopefully, others won’t have to spend months trying to search for the answer…..

  5. Mary Says:

    Steve C.
    I got results from Pulmonologist today…Sniff test shows ” relative decreased movement of left diaphragm compared to right. Not consistent of left phrenic nerve paralysis, but rather weakness of diaphragm. PFT results did show low lung volume due to the elevated diaphram, which is indication there was injury to phrenic nerve., slight asthma, …….told “no specific therapy”, just regular exercise as well as maintaining ideal body weight. & use Inhaler daily…I might be 10 lbs. over what would be considered ideal. Not sure that I have found any relief with what I was told.

    In reply to Jan, I also had nerve blocks done, 1 prior to my surgery to determine if it relieved the compression that was causing the symptoms in my arm & hand so that might have been when injury was done or even during the 3 surgeries that followed. Will be interested on your husband’s progress.

  6. jan bush Says:

    Back to you Steve…
    My husband is doing absolutely great. I can hardly keep up with him on walks, whereas before, he ran out of oxygen after 5 minutes of walking. Also, he had ulnar damage (forearm and hand) from shoulder surgery…4 hours of arm weighted down and the ulnar nerve was previously compromised. Dr. Kaufman freed up the ulnar nerve at the elbow and his neurological symstoms have decreased. He started lung therapy to increase the strength of his diaphragm and that’s going well..mostly aerobic type exercises, treadmill, etc. We feel so very lucky to have found Dr. Kaufman…

    • scrozier Says:

      Jan, that is terrific news! All happiness to you and your husband. I am optimistic that I’ll be in the same camp once my nerve has had time to regenerate.

  7. Doades Says:

    my husband has double paralyzed diaphragm, not caused by injuries or surgery. basically healthy, just happened.
    doctors are waiting to see if will reverse, what can we do to help it.

  8. editbee Says:

    So pleased to have found your blog entry! My husband has a paralyzed left diaphragm, and has been told he’ll have to live with it. I think the nerve was damaged long years ago when he was standing by the road and got creamed by a drunk driver. Cervical vertebra C-5 was injured. Nobody discovered the diaphragm thing until 2007 when a heart scan tech wondered why my husband’s heart was moved and turned toward the right side of his chest. The x-rays at the pulmonologist’s were jaw-dropping to everyone. The diaphragm had risen so high, the left lung was crushed down to almost nothing. A fluoroscope was done. And after all that — “just be careful … no heavy lifting.” *sigh* The man can’t breathe! His life has come to nearly a standstill. Anyway! A google search on the phrenic nerve brought me to your blog, along with several links to Dr. Kaufman’s site. Thank you so much for sharing your story. I’ll be sharing this with my husband to see what he thinks about pursuing this.

  9. Jill Says:

    Hello. Thank you for your blog. I am scheduled for phrenic nerve surgery with Dr Kaufman on Friday (July 20, 2012). I sustained this injury on Dec 21, 2012 when undergoing a catheter ablation where they injured the phrenic nerve. The past 7 months have been life changing and torturous. I am hopeful of success with this surgery. .

  10. Jill Says:

    oops sorry that should be 12/21/2011 not 2012.

  11. vona Says:

    My husband had phrenic nerve surgery with Dr. Kaufman on Jan. 27, 2012. Results as of last week: Still diaphragm is totally paralyzed. How are your results as of today?

  12. scrozier Says:

    Update on my situation. About 4-6 weeks ago, Dr Kaufman’s office contacted me and asked me to have a follow-up sniff test to see whether I had any diaphragm function. I don’t know this for sure, but I think this time (8 months out from surgery) would be about the minimum for my phrenic nerve to have regenerated.

    I said I would get the test, but put it on the back burner, as I did not notice any difference and thought that the sniff test would be “negative.”

    About two weeks ago, I finally went in for the test. I was a little underwhelmed by the radiologist. For one thing, she didn’t even ask me to sniff. I mentioned it to her, and she reluctantly had me sniff. She commented, “everything looks normal.” Puzzling. How could everything look normal? Clearly, she didn’t know what she was looking for.

    So the next day I contacted my pulmonologist, whom I trust completely. He’s been following me through the surgery with great interest, even though he was not completely convinced it was going to work.

    I told him about the test and asked him to talk to the radiologist. He said, “I saw the films myself yesterday, and your diaphragm position and function appears normal.”

    Needless to say, I was pleasantly surprised!

    So far, I don’t feel much different, if at all. I’m assuming that that is because my left hemi-diaphragm has atrophied and will need to be rehabbed. I am doing that now, and have much hope!

    My wife (a physician) says that she still hears “reduced breath sounds” on my left side. I’m eager to talk to my pulmonologist to find out how that can be, with my diaphragm now working normally.

    I will travel back to NJ soon to have a follow-up nerve test, at Dr Kaufman’s request.

    I will keep you posted here.

    • Thomas W. Maddalla Says:

      Hi, Mr. Scrozier , Hoping this finds you well. I was #21 for surgery just like yours and I’ve been following you on the blog for a while and I wanted to thank you very much for being the person that you are. You were following everyone else’s interest and concern on the blog, without knowing the results of your own. You are a very special person, and I would like to thank you on behalf of everyone who have been helped by your kind words. I’m very happy to hear that you have been doing so well after not knowing the surgery worked. We are all very happy for you. Thanks for doing what you do. Thanks again… Tom Maddalla and Jan Bush Vero Beach, Florida

  13. Eric O Says:

    Mr. Crozier,
    I hope your condition continues to improve. And thank you for jumping into the research with both feet and sharing it here.

    I am 43 years old, and following a recent battle with the flu with some vomiting and with rather violent “dry-heaves” (this is about 11 months ago), I found myself short of breath, particularly when prone and when active walking uphill, upstairs, or when carrying a load in my arms. This has been hard because I have three young boys, 6,4 and 1 year old.

    I let this go on for about 6 months before finally seeking medical advice.

    Breathing tests revealed about a 40% reduction in lung capacity when prone and 15 to 20% reduction in the seated position. I was never tested while active or exercising.
    I also experienced episodes of long, drawn-out belching for no apparent reason.

    I figured I had ruptured something in my diaphragm, but the neurologist said that the flu-virus had actually damaged the Phrenic nerve, and the “dry-heaves” were not the culprit.
    They’re calling this a “bi-lateral partial paralysis of the diaphragm”
    The Neurologist essentally said there’s nothing to be done for my symptoms, but that sometimes people will find some improvement over time. OK

    My sleeping has suffered, my daily activities have suffered, yet
    I am grateful I have not experienced any real pain in conjunction with my symptoms, unlike so many others, and hope that everyone who reads this blog is finding comfort as time passes.

    Thanks for your blog.

    Sincerely,
    Eric O.
    Santa Cruz, CA

  14. Mike H Says:

    I too have found out that I have right side diaphragm paralysis. On 8-29-12 I woke up with severe right shoulder and upper back pain. After thinking it might be heart related, many doctors a few weeks later this was the diagnosis. I actually have images over a few weeks where my diaphragm is going up. I am planning on contacting someone to help. I am in Indiana. Is there any doctors you are aware of like Dr Kaufman in the Midwest? I’ll do New Jersey if necessary to get my breath back!

    • scrozier Says:

      Mike, I am unaware of anyone except Dr Kaufman who does this surgery, at least in the U.S. That’s not to say there is no one else, but I don’t know about them.

      Good luck to you!

  15. SARAH Y. Says:

    Finding this has been a huge help. For the last two years I have been in the E.R. several times with breathing issues. They have said it was this or it was that, then finally they did an X-ray. He told me, “There is something on your x-ray, it’s, it’s Well just come look.” He then showed me my x-ray and said “It could have been there for any amount of time. There is no way to know.” He never said what “it” was or anything really! He then asked if I wanted a second oppinion. Since he really didnt even give me a first oppinion, I jumped on that and went to a lung specialist. He sent me for my sniff test yesterday and I am meeting with him next week to discuss breathing exercizes and options. I used to love camping and I would love to be able to hike again. I think this procedure will be discussed next week with my doctor. Do you know what side effects this procedure can cause? Thanks for your article!

    • scrozier Says:

      Sarah, I am sorry that you’re having breathing problems. The first doctor didn’t sound very helpful; I hope the lung specialist is more so.

      If they tell you that you have a paralyzed diaphragm, you may want to consider contacting Dr Kauffman. It is unlikely that your lung specialist will know about the surgery I had.

      I will defer to your doctors to discuss the possible side effects, as I don’t want to confuse you–and I’m not a doctor.

      Good luck, and let me know if I can be of help.

      • SARAH Y. Says:

        Scrozier,

        Thanks for your quick response! The sniff test has already confirmed that is is a paralyzed diaphragm. The appointment next week is just so he can tell me breathing exersizes. I am already doing 6 breathing treatments a day, he thinks these exersizes will help cut those down. Do you know how I can contact Dr. Kauffman. I am only 26 years old and I dont want to be inactive, or miss work, or miss out on anything if I dont have too.

      • scrozier Says:

        Sarah, I will send you Dr Kauffman’s contact info by email. Again remembering that I’m not a doctor…I would certainly contact Dr Kauffman. I got a lot of bad/incorrect advice when I was in your position, including the advice from a prominent surgeon that I should have a diaphragm plication. If I had done that, I would not have been eligible for the surgery that actually corrected my condition.

        Also, it’s useful to move quickly on this. The longer your diaphragm is not innervated, the more it atrophies.

        Good luck!

  16. Robert Senatore Says:

    I have been going thru shortness of breath, bouts of belching like I have never experienced in my life , dry heaves in the morning and difficulty getting good sleep. I am 61 years old.. After many doctors exams , ct scans, mri’s ,x-rays, blood tests etc. I was 5 monthes into this sicknesss with no diagnosis , when finally my pulmonologist had my ct scan re-read by a different radiologist and he diagnosed nerve damage with a paralyzed left diaphragm that had collapsed my left lung and pulled my stomach and spleen out of their normal positions. After a sniff test this was proven to be the correct diagnosis. All my doctors said ” sorry” but there is nothing more that they can do for me.My son discovered Dr.Kaufman on the internet and on Aug. 1 I am going to see him at his office in New Jersey. Hopefully , I will be a candidate for nerve transplant surgery. Keep up the great servive you are providing with this blog.

  17. Robert Senatore Says:

    No , he just googled phrenic nerve damage and eventually was able to find Dr. Kaufman’s site.

  18. Robert Senatore Says:

    I am interested to know how you are doing since the operation.

    • scrozier Says:

      Robert, sorry for the late response. I am doing well, and the complete healing of my phrenic nerve was confirmed a while back (about 10-11 months post-surgery). I’m in the diaphragm rehab phase and, to be honest, not the most compliant patient. My daily life is pretty normal, but still have some shortness of breath on exertion. Will use this as a reminder to do my breathing exercises….

  19. Duane Pittman Says:

    Thanks for creating this blog. I hope others find it useful, and to that end I’ll tell my story. I, too, had unilateral (right) diaphragm paralysis, this from surgery for Thoracic Outlet Syndrome. I, too, was told by doctors and pulmonologists that nothing could be done (except a useless plication). I was very symptomatic and needed part-time supplemental oxygen, having lost about 40% of capacity and function. And most importantly, I, too, found Dr. Kaufman from digging around online.

    In July, 2011, I became Dr. Kaufman’s patient number 30-something. He went in with a thoracic surgeon standing by, not knowing what he would have to do. Turns out the nerve was still intact, but it was covered in scar tissue and was being strangled by fibroidal tissue (although the nerve had ceased to function during the TOS surgery seven months prior, in December, 2010.) Dr. Kaufman cleaned up the nerve but it still exhibited unusual results on an internal, direct conduction test, and because pristine nerve on both sides of the damaged portion was accessible through the incision in my neck (no thoracic surgery through my ribs required) he placed a graft over the scarred portion of the nerve. There was no way of knowing if the nerve would have reinnervated without the graft, and I had traveled 3,500 miles from northern Nevada for this procedure.

    It took almost a year to finally take, but take it did. A sniff test was normal, I oxygenate at 95-98%, I can lay flat on my back without gasping for air, and I’m back to my favorite pastime of high Sierra camping and backpacking. I backpacked at over 10,000 feet last year – while just a year before that I couldn’t drive above 8,500 feet without oxygen!

    I am indebted to Dr. Kaufman for this groundbreaking procedure. I know he doesn’t do it for the money; too much preparation and time compared to the more lucrative vanity plastic surgery. I wish all of you success with your situation.

  20. Robert Senatore Says:

    I have been examined by Dr. Kaufman , had my EMG done by Dr. Brown and I am scheduled to have nerve transplant surgery with Dr. Kaufman on Friday, Sept 13 at Jersey Shore University Medical Center. He thinks I have a 70% chance of success to regain use of my left diaphragm and hopefully open up my lung to enable me to breath normal again. Thanks to everyone for posting comments that have kept hope alive for me.

    • scrozier Says:

      Robert, hope your surgery went well!

      • robert Senatore Says:

        Hi, Surgery went well. Dr. Kaufman told me that with external stimulation my diaphragm moved after the surgery. He said this was due to the decompression procedure. My stomach is pulled up in my chest below the elevated diaphragm and that causes me discomfort daily but, I am used to it after 8 monthes. He transplanted the sural nerve from my left ankle and we now just can wait to see if the graft takes and the phrenic nerve is regenerated. I had my follow up visit last Thursday the 19th and the incisions are healing nicely. He wants to see me again in three monthes. Thanks for asking and I will keep you updated. All the best to you.

  21. Thomas W. Maddalla Says:

    Dr. Kaufman did mine in Feb. 2011 and did an amazing job. Better than New. I Was #21. You couldn’t have made a better choice as I’m sure you will be on your feet soon. It took for me the first day as in breathing better, then walking around the block the second day and progressively running for thirty minutes at a clip a year later. I couldn’t walk 200 feet before the procedure. Just couldn’t get enough oxygen. Jan and I are wishing you a speedy recovery, and say hello to Doctor Kaufman for us. Best wishes Tom Maddalla & Jan Bush, Vero Beach, Florida.

  22. Robert Senatore Says:

    Dr. Kaufman performed surgery on me yesterday , Friday the 13th . He transplanted a section of the sural nerve from my left ankle . He grafted it onto the left phrenic nerve near my collarbone. Everything went well. He thinks the future looks good for me. I said hello for you Thomas Maddalla. He seemed happy that his patients can keep in touch with each other. He is truly a miracle man.

  23. Thomas W. Maddalla Says:

    Dear Mr. Robert Senatore
    I just read about your surgery results and I started to cry I was so happy to hear your results. I’m so happy for you , I’d like to have a calibration. My surgery was on the opposite side, but nearly identical. It may take a few days to get on your feet, but don’t let that stop you. I was walking around the block at the hotel the next day. You will have to go to see Dr. Kaufman a week after surgery as did I so get your butt going and get some walking done. I know it hurts but get going and do what you can. Soon You will be the person you once were, Thanks to DR. Kaufman and the wonderful team that he has put together for us. Oh, and the ankle will heal eventually, you will find that your Nerve really likes its new home up in the penthouse. The side of your foot will be numb, but you won’t notice it after a while. Not really a bad trade if you ask me!!!! And you get to keep your Nerve to boot. Ha Ha. Hope All goes well with your recovery. Keep in touch with us, we’re here to stay. Maybe we can all have a reunion some day. A survivors Reunion… Well, we’ll sleep on it anyway. Hope this helps… Gods speed, Get well soon….Tom Maddalla and Jan Bush Vero Beach, Florida.

  24. Robert Senatore Says:

    Hi scrozier, Dr Kaufman was wondering how you are doing ? I’m going back on Thursday 9/19 for follow up. The cause of my illness has never been discovered and like you say ” I don’t care.” Hope you are well.

    • scrozier Says:

      Robert, I am well. See my previous post. Sorry I didn’t get back to you before you went in for follow-up. If you talk to Dr Kaufman and his team, please give them my best.

  25. Robert Senatore Says:

    Six weeks since my surgery and I had to get some physical activity in. I am a marathon runner and this illness has been a death sentence. I have not been able to run since last March when my diaphragm became paralyzed from the phrenic nerve injury. So, this past Saturday I did a 4 mile run/walk- 70% walk/30% run. I finished the 4 mile course in Central Park, NYC. No great achievement for me but, that being the old me. My breathing was extremely labored as there is no change in my condition since the operation. I will continue to ” attempt ” to be the runner I once was. My goal is to get my left lung back to 50% capability and train the next two years to run the 2015 NYC marathon. I have done it three times before as well as the Chicago, Philadelphia and New Jersey marathons. the memories are still with me but, I need to live with more than just memories. I would greatly appreciate comments from as many of my co- nerve transfer survivors as possible. If you can let me know about your recovery and present conditions monthes and years after the surgery I will be hugely thankful. God bless you all.

    • scrozier Says:

      Robert, good to hear from you. What did Dr Kaufman say should be your expectations in terms of nerve regeneration? Do you have to wait some time for that?

      I’m 21 months post-surgery at this point. I feel pretty good, but need to be more diligent about my rehab diaphragm exercises. I’m not particularly athletic, so don’t have anything like that to specifically compare. I still get pretty winded on hard exertion, but there seem to be so many other factors (aging, weight, etc.) that it’s hard for me to say specifically how my recovery is going.

      • Robert Senatore Says:

        Dr. Kaufman said it we won’t know if the graft took and the nerve is regenerated for 9-12 monthes. He predicted a 50% improvement in my breathing and said I will run again if all goes to plan. He said I will be the first to know if things are improving just by the way I’m feeling. I am 62 years old but , before this illness I was in better shape than 75% of the younger men I would run against ( 25-55 year old guys ). This condition has devastated my daily routine and I have only the hopeful success of this operation to hold on to.I have gained 15 lbs in the past year due to lack of exercise.I will be checking in with Dr. Kaufman at the three month point out from surgery- mid December and see what he thinks about the future for me.
        Thank you for your response and I hope we stay in communication with each other.

      • Thomas W. Maddalla Says:

        Hi Robert, Glad to see you are making a good progress in your endeavor for a recovery. I do know that it is not an easy achievement that can be done in a short period of time, and I share your feeling of not making progress before you get too old, I would add that I was diagnosed at 65 and suffered for two years before seeing Dr. Kaufman at 67 and now I’m 69 and 70 in January. My Point being that Rome wasn’t built in a day to barrow the phrase. It seems to me that you are doing better than I at this point as you are running a four mile run/walk, where myself I would be out of Oxygen at 400 Ft. at a mere Six weeks, and I was going through radiation treatments for Cancer at the same time. No Robert, Its not easy and certainly not fast, but it is more progress than most can expect in such a short time. I don’t want to sound too critical as you are working very hard to overcome this and I commend you for that. You sound like a fantastic person and I’m sure you will do just fine. I will make a closing prediction and say that you WILL RUN in the 2015 N.Y.C. MARATHON… Hope I will be there to see that. Good luck and get well even if it’s not too soon!!! Ha Ha Keep in touch. Tom

  26. Dee Ham Says:

    my name is Dee Ham and i am 63 years old… I have been an avid hiker for years. I hiked to the bottom of the Grand Canyon this year and to Mount LeConte.but I knew I was lacking energy.. I have been diagnosed with a paralyzed left diaphragm. I have major issues when trying to do hikes now. I have a lot of bloating. I dont know what to do. My lung doctor has me taking spiriva. From reading the blog it seems that the only hope for me is getting in touch with DR Kaufman. I would appreciate any help. We have great medical schools in NC such as Duke and Baptist hospital but it doesnt seem that anyone specializes in this field.

  27. Bill L. Says:

    Mr. Crozier,
    Thanks for sharing your research and providing a forum for all to share. I was recently diagnosed with left diaphram paralysis. I have asthma, and for months my Dr. thought is was merely getting worse. At first I only used Pro-Air, then started using more frequently. My Dr. then put me on Advair 100/50 and after still having problems he put me on prednisone, Advair 500/50 and sent me for Pulmonary function testing. Results indicated restrictive disease and not obstructive as associated with asthma. I then met with Pulmonary Specialist who sent me for X-ray. Moments after arriving home from X-ray, I received a call from the Dr. to inform me that my left lung was elevated and that he suspected that my left diaphragm was paralyzed. He then sent me for a CT Scan which came back negative (aside from condition). I then went for “sniff” test which imediately confirmed paralysis. They believe it occured when I received a nerve block during rotator cuff surgery on my left shoulder in Oct 2012. I remember having some discomfort with my neck and throat after surgery although I really didn’t notice increase in asthma type symptoms and shortness of breath until spring/summer. My follow-up with Specialist was disappointing as he basically said the condition was permanent. I then informed him of Dr. Kauffman’s success which I learned from your blog. He said he was unaware of any such procedure but said he would look into it. At 50 yrs old, and happily married with two children (12 & 10) I am struggling with the fact that my breathing is going to be labored and asthma-ridden for the rest of my days. On Friday I called and left a message with Dr. Kauffman’s coordinator and expect a call this Monday. I am praying that I may be able to meet with him and more importantly be restored to my former self. Thanks again for the forum and God Bless you and all the others on this blog struggling with this condition and/or recovering.

  28. George McElhenny Says:

    Does Dr. Kaufman & IAR accept medicare & secondary insurances?

  29. Robert Senatore Says:

    Hi all. Four months since my nerve transplant . Started respiratory therapy this month and it is a slow laborious process but, necessary. I am resigned to the fact that this condition will be with me for my entire life and i will survive. I just will never do what I was able to do before .
    This “situation” has given me a different prospective on life .
    It has convinced me that the practice of taking life one day at a time is the only way to live. I was fortunate to have found Dr. Kaufman and his wonderful staff and can’t imagine what my life would be without my operation. I have hope for recovery . Whatever that will actually mean. God bless you all who have shared this unfortunate condition and good luck and success with your future lives. Now, I must do some breathing exercises and smell the roses.

    • scrozier Says:

      Thanks for the update, Robert. A couple of questions for my own curiosity. You’re doing rehab; does that imply that your nerve is working again already?

      Secondly, what kind of exercises/activities are you doing for respiratory therapy?

  30. Robert Senatore Says:

    My pulmonary doctor is hearing more breathing sounds in my left lung now than he did prior to my operation. Yet, my diaphragm is weak and hardly working. So, he is trying to get my brain to start sending impulses to my left diaphragm. Still will not know if nerve is regenerating enough to do this sufficiently for awhile. He is planning on monitoring my breathing each month. He has me doing 30 minute walking/running sessions a few times per week. Also, i use an inspired spirometer to measure how many millimeters of air I can fill my lungs up with.For my age and height it says I should inhale 2500mL. but , all I can reach is 2000mL. Also, I take approx 10 -20 deep breaths and hold my right diaphragm in place to try and resist its natural movements trying to get my brain to send signals to my left diaphragm and get it working..Additionally, I lie on the floor with my legs up on the couch and take 10-20 short breaths thru my nose. He wants gravity to try and make my diaphragm move up and push air out of my lung. Each month we will try different approaches to get that left diaphragm working and becoming somewhat stronger. He fears that waiting very long will weaken the diaphragm muscle so much that it will never work strong enough to get my left lung functioning at least 50% of normal. I am slowly getting into this routine and I know positive results may take a year.

  31. Dee Ham Says:

    Robert, I hope your pulmonary md has conferred with Dr Kauffman about your rehab.. since all most pulmonary doctors only tell you of the problem. I too went to a pulmonary doctor and he had never heard of Kaufman. You would think that these doctors would want to be up to date on what is happening. but i guess they leave it up to their patients to learn about new procedures…. good luck..Dee

    • Robert Senatore Says:

      Hi Dee, I actually brought my pulmonary doctor the full packet of all the information that Heather sent to me last summer that included Dr. Kaufman’s bio and articles about the nerve procedures he performs. My pulmonary doctor called Dr. Kaufman a genius and immediately had his receptionist photo copy all of the pages. He considers me and all of the patients Dr. Kaufman has performed surgery on very courageous people putting our lives in Dr. Kaufman’s hand for such ground breaking surgeries. My Dr. and I have had lengthy conversations about these procedures and he has taken great care and interest in helping me recover.I thank you for your thoughtful concerns.How are you doing ? Please let me know , as I feel a strong kinship with everybody who posts on this blog.

      • Dee Ham Says:

        I hikes 5 miles yesterday with my hiking club. They are a patient group and I was at back of pack. Going up is hard, flat and even terrain is ok. Sleep is not an issue but working out at the Y especially when my class goes to sit ups is tough. I guess I have a not severe case of paralyzed diaphragm. My physical last week did show a 50% reduction in breathing .. I am waiting to hear from Dr. Kaufman.I did give my family doctor a copy of Dr Kaufmans december paper he wrote and my doctor was very impressed too.. Hope all goes well for you.

      • Dee Ham Says:

        I spoke with Gordon a recent patient of Dr Kaufman’s in Charlotte and he says his breathing has improved 90% .. I hope others are getting the same results

  32. Robert Senatore Says:

    That’s good news. I wonder if he had a nerve transplant or a nerve decompression ? Dr. Kaufman has hopes for a 50% improvement for me with my nerve transplant. The left diaphragm has been out of business for so long that it has atrophied a great deal and at my age anything near a 90% improvement is out of reach. The last thing Dr. Kaufman said to me before I was wheeled into the operating room was, ” I can not make your nerve brand new and therefore your diaphragm will never be as good as it once was.” I understood that fact and was just hoping for any amount of improvement in my breathing . I just didn’t want my condition to get worse.It hasn’t gotten worse and for that I am grateful. Thanks for keeping this chain of information alive.

  33. Dee Ham Says:

    According to Gordon, who is an avid Kayaker, he had a nerve transplant. He is 61 years old I believe. He is VERY upbeat about his surgery and his positive attitude gives me hope…

    • Brenda Says:

      Dee
      I am curious to see how you are doing today. Would you mind posting an update.
      Also anyone who has flown with pherenic nerve paralysis? I am supposed to go on a long international flight but am not sure I can handle the trip…
      Thanks for your input.
      Brenda

      • scrozier Says:

        Brenda, speaking only for myself, I’ve never had any trouble flying.

      • Brenda Says:

        Thank you for your response Steve. I truly would like to see my only child, ten year old Grandson and daughter-in-law who live in Australia! Supposed to leave in a coi

      • Brenda Says:

        Thank you very much for your response Steve. I truly would love to see my only son, ten year old Grandson and daughter-in-law who live in Australia! Supposed to leave in a couple of weeks…..
        Hope you are doing well.

      • Joan Marven Says:

        I have left phrenic nerve paralysis, I flew to Europe last year from Canada and will be going again this year, experienced no negative effects.

      • Judy Says:

        I have only 50% lung capacity at best. Mine injury was from a spinal surgery in my thoracic spine . I have flown to Florida from Los Angeles a lot of times, doesn’t seem to matter. I have severe back problems and a foot drop so I do also get a wheelchair at the airport. Have a safe trip.
        Judy

      • Dee Says:

        I am doing ok… have not had a chance to hike yet…. still get winded easily … did fly to Europe this winter and had no issues breathing… maybe since I caught the flu in Europe I did not notice breathing issue… Wish I could say that I was back 100%

  34. philip nelsen Says:

    Thank you for something to read, I have parylzed diaphragm. I am 39 years old with asthma, and overweight but active.I stand all day and work on repairing cars structurally for a living. While at my allergist , I was asked if I wanted a flueshot, at the time I didn’t know much about them, my doctor since I have asthma said I could get very sick with flu, so I got it. A few days later I got I had stabbing pains in my chest while breathing. Went to hospital and was said to have plursy after chest xray. They also told me to follow up with pulmonologist for nodules on lung , which have been fine. While with the pulmonologist he asked if I had trouble breathing while swimming, I had noticed I couldn’t float easy, he also listened to breathing without deep breaths which no doctor had done, any way sniff test than specialist at Columbia confermed diaphragm parylsis. Anyway 8 years later after being told to lose weight I here of this, I woke two days ago with a colapsed lung and pneumonia , did not show in xray and they were gonna send me home. My pulse went up and I insisted they keep looking , I told them about diaphragm only to get blank stairs and asked for my pulmonolgist only to get told it was not asthma related, they then did ct with die(I never got die with asthma but had no choice).they than found adekeleksis? Collapsed lung with pneumonia do to non moving lung .any way found new doctor which cares and new pulm that I will share with. Right now 3 days recovering. Sorry for jumbling around needed to be heard thank you

    • Dee Ham Says:

      I am having surgery with doctor Kaufman I STRONGLY suggest you do the same if you want to get on with your life

      • Robert Senatore Says:

        Dee , Good luck. You are in the best of hands. It has been 6 months since my surgery with Dr. Kaufman and although my breathing has only slightly improved, I know I am on the right track to recovery and everybody who knows me says I look great now compared to how I looked a year ago. Say hello to Dr. Kaufman and
        his staff. Dee, you are a brave person to go for the surgery. God bless you.Best of times ahead.

      • Lori Says:

        Hi can you give me Dr Kaufmans website? Thank you loriliz0412@hotmail.com

      • scrozier Says:

        Sent in email, Lori.

  35. Dee Ham Says:

    My surgery is the first week of June , Will post what I can after I return home… Hoping that this will improve things for me,, Excited but not going to get my hopes too high,, Wont know how much better things will get until further down the road

  36. Thomas W. Maddalla Says:

    Hi Dee, Just wanted to pass on the good wishes. I had mine done in 2011 and couldn’t ask for a better outcome. It was slow at first, but worth the wait. DR. Kaufman and his team will take good care of you. I can promise you that. He is amazing, so best wishes and keep your chin up. Tom Maddalla and Jan Bush Vero Beach, FL.

    • Dee Ham Says:

      thanks Tom for your well wishes. It would be fun someday to get as many Dr Kaufman patients together as possible. We all have something in common to talk about.. Dee Statesville NC

  37. phil nelsen Says:

    good luck Dee i hope every thing goes great

  38. Michelle Says:

    This is a very insightful article. My father was diagnosed with diaphragm paralysis about 7 months ago and has had a terrible time with it. No clear answers from the pulmanologist and several hospitalizations. All they want to do is throw some steroids and antibiotics his way and say “have a nice day!” He is very frustrated and tired of feeling this way. I have vowed to do what I can to help him out and after reading this blog I think we can get some answers. I will be contacting Dr Kaufman!!! My father has had 3 heart surgeries and it makes me wonder if this condition is a result of one of his surgeries. We were able to find in x-rays that he has had this condition unnoticed for at least a year prior to diagnosis. His doctors are not offering any type of exercises for his accessory muscles. I hope we can get some much needed help. Thank you all for the stories and information.

  39. Dee Ham Says:

    I am having surgery this summer ,, with Dr Kaufman. We keep changing dates.. but I am excited to do this no matter what the outcome

  40. Joan Marven Says:

    I am in awe of all the wonderful, brave people who are suffering with this dreadful problem, and to you Steve for being a great contact for us. Thankyou.

  41. Joan Marven Says:

    I had my thyroid removed almost 10 months ago, about two weeks after the surgery I had problems breathing and started gasping for breath…..I had the “Sniffing X-ray and was told I had left diaphragmatic paralysis / phrenic nerve palsy, and the prognosis was it would take up to eighteen months to heal???? I haven’t felt any different/ better since the surgery.

    • scrozier Says:

      Hi Joan. I am not a doctor, but I’ve been told by lots of them (doctors) that phrenic nerve damage does not spontaneously heal. You might want to check in with a pulmonologist or neurosurgeon.

      • Joan Marven Says:

        Hi Steve, thanks for your quick response, I have seen a Respirologist,a Physiotherapist,and lastly a Thoracic surgeon, the latter said after a year he would do the Plication, although the surgeon who did the surgery advised me against it! The physiotherapist taught me how to breathe, the Respirologist couldn’t help me at all….. My family doctor has given me inhalers and said ‘ I have lots of patients with only one lung and they’re fine’!!
        I would be very interested in talking with Dr Kaufman, if you would be so kind as to send me his contact information.
        Regards Joan
        Thank you

    • scrozier Says:

      Joan, be very wary of plication. As you know, it is *not* a fix for your phrenic nerve or your diaphragm, just a way to keep the diaphragm from impinging on your lung. If you have a plication, phrenic nerve repair is no longer useful.

      If I had had a plication, as also recommended to me by a thoracic surgeon, I would not have been a candidate for phrenic nerve repair.

      (And again, remember, I’m not a doctor, so take my advice for what it’s worth.)

  42. Dee Ham Says:

    Joan , I am due for surgery next month with DR Kaufman. I agree that you need to contact him and see what your chances of for surgery. I too am not a doctor but a 63 year old hiker that wants to get back on the trail again. This surgery at least gives me hope of returning to the hiking club I started six years ago.. Good luck…

  43. Joan Marven Says:

    Yes I am Steve, when the surgeon, plus I visualized this fix it, I decided that I wouldn’t have it done…
    Thank you for the address of Dr Kaufman, I will get in touch.
    Regards Joan

  44. Joan Marven Says:

    Hi Dee, very nice to meet you, so sorry you are going through this too.
    I really hope your surgery works for you:) so you can get back to the better health that you previously enjoyed.
    I just want to get back to my life as it was a year ago, I was feeling great and doing my favourite thing, Travelling, this diagnosis is a BAD one for all of us that have this.
    I can tell you it felt like a punch right between the eyes, and I’m still reeling.
    I will be getting in touch with Dr Kaufman.
    So much luck to you

    Joan

  45. Dee Ham Says:

    thanks Joan

  46. Christine Says:

    Sooooooo grateful to you for all of the work you’ve done on behalf of all of us with paralysed diaphragms! My experience with the medical system is similar to so many of those posted here, and it’s been thoroughly validating to read through it all. I was diagnosed in late 2011 and given the same “nothing to be done but breathing exercises.” While I have better function than most of the people who have posted, I fear that other systems are being affected (specifically, my GI). Please please please PM me with the contact information of Dr. Kaufman. Thank you so much for your devotion to this issue.

  47. Dee Ham Says:

    Had my surgery with Dr Kaufman yesterday at 730 am, His group and the hospital are VERY professsional. He informed my wife that he was very excited about the outcome of the surgery., Will keep all informed…Our follow up meeting with him is tuesday…. Hope all goes well for the rest of my friends.

  48. Thomas w. Maddalla Says:

    Hi Dee, Congratulations on the first day of your new life. I was there in 2011 and never regretted it for a minute. We are praying that you will be feeling better soon, and on your way to full recovery down the road. Mine took a little over a year for full recovery, but was well worth the wait. Tell Dr. Kaufman that Tom Maddalla said Hello from Vero Beach Florida…………….Tom Maddalla and Jan Bush

    • Dee Ham Says:

      thanks Tom.. my conditions were not as bad as many but non the less took me off the hiking trail with my club… I too am very impressed and thankful that there are men such as Dr Kaufman in this world… God Bless from New Jersey … but back in North Carolina by Wed

    • Dee Ham Says:

      told the doctor hello for you.. he thinks I will recover but it will not be overnight… that is ok with me ..may be 8 months to a year also

  49. Robert Senatore Says:

    It’s been a little less than 10 months since my surgery with Dr Kaufman. Last Friday, I completed a month of diaphragm physical therapy at RFK Rehabilitation Center in Edison NJ. Last Sunday I completed a 5 mile race in Central Park. It was my first road race in 15 months and although my time was my slowest ever I felt great and have signed up for my next 5 miler on August 10. Dee, I hope you are doing well since your surgery Baby steps at first but, if you keep working at it the results you desire will come true. Hi to Tom Maddalla and Jan Bush. The support from everybody here has helped get me thru the lowest time in my life. God Bless and much love to all.

  50. Dee Ham Says:

    In the mountains resting for a couple of weeks in NC.. Your message was well timed.. I was getting a little down, not willing to accept that this recovery is not going to happen overnight. Happy July 4th.. God Bless

  51. Hugh Griffith Says:

    Thanks for the Blog! In January of this year, I had an anterior cervical procedure; and, after six months and several specialists, I finally had the xray with sniff. Apparently my phrenic nerve was damaged during the surgery resulting in a paralyzed left diaphragm. I would appreciate you sending me the link for Dr. Kaufman by email.

    • scrozier Says:

      Hi Hugh. Will send info shortly. Good luck!

      • Doreen Says:

        Please send me the info on Dr. Kauffman. My husband had a shoulder replacement in February. Ever since then we have been from doctor to doctor to get help for him. His phrenic nerve was either severed or damaged ( we can’t find anyone to verify either) and now he has a collapsed lung. Basically he has been told that he should feel lucky….many people live with one lung….and that he just needs to wait and see what happens. BS.
        The quality of his life has changed dramatically. We need help. He is finally ready to start seeking help again.
        Thank you.

      • Dee Ham Says:

        Steve will send you information.. you can also google parayzed diapragm and scroll to his website.. The recovery is long and slow but in my opinion is well worth the wait… It seems that most doctors imply that whats the big deal . You can live with one lung. I choose not to if there is even a small chance of fixing things I am going to try it

  52. Thomas w. Maddalla Says:

    Sorry to hear that you are joining this motley crew…But we are Happy, Happy, Happy to hear you chose the right coarse of action when you chose DR. Kaufman and his wonderful team. Welcome to the blog, and if you have any questions, feel free to just ask as we have all been there. OH….and Welcome Aboard. Tom Maddalla and Jan bush Vero beach, Fl.

  53. Dee Ham Says:

    Hugh I had the surgery in June and have no regrets… This is the only choice an active person has… Recovery will be long and slow but over time will be worth the wait. I have hiked up to eight miles and although not very strenuous it is a start.. my wife continues to imform me how well I am doing .. but I must keep reminding myself the recovery is not overnight…Keep us all informed as to your plans Dee

  54. Thomas w. Maddalla Says:

    Hi Doreen, Sorry to hear about your husbands misfortune, but you have come to the right place for help as we all have been through similar surgeries here at Scroziers Blog. I know that we can only supply some lip service right now but, we can surely supply lots of hugs during your experience Ha Ha. Oh Yeh, did I mention that Spare parts are still available here at no extra charge!!! Keep in touch and I’ll explain about the ” Spare Parts” . Good luck at Dr. Kaufmans office visit. I’m sure you won’t regret it. Tom Maddalla & Jan Bush, Vero Beach Florida

  55. Dee Ham Says:

    just curious .. has anyone that has had the surgery ( like I have) suffered any set backs? I was doing great walking as much as eight miles at a time in the mountains. Yesterday ( 4 months after the surgery ) I tried to walk 3 miles with my wife on a golf course and literally had to stop every 20 yds to catch my breath?? The golf course is not in the mtns and is pretty flat…

    • Rob Senatore Says:

      Hi Dee,
      I am one year since surgery and certainly have felt improvements since the surgery. Before my surgery I would be out of breath walking up a flight of steps. I am a marathon runner and have gotten up to 5 mile run/walks. No way I can run 5 miles without stopping. I think it will take me another year before I can run a half marathon ( 13 miles ) without stopping. Humid weather hinders my progress and any kind of respiratory ailment will slow me down , even the smallest of colds. Good luck. Do as much as you can but try not to overdue it. It is as Dr Kaufman told me a long slow recovery .

  56. scrozier Says:

    Dee, I don’t feel like I ever had a full recovery. Much of that is my fault: I haven’t been a very compliant therapy patient. Also, my diaphragm had been atrophying for 3-4 years before surgery. I am clearly better than before surgery, but not 100%. But as I say, my fault.

    • Dee Ham Says:

      thanks for the quick reply.. I have no idea how long my diaphragm has been paralyzed I assume that is the same as atrophying .My pulmonologist only tells me that at the time of diagnosis that the diaphragm had been paralyzed for over a year. Other than that he is of no help only to tell me that nerve grafting doesnt always work. The rehab people when asked for help on diaphragm training basically said to just try to breath deeper. Small town , little support or knowledge of what to do much less much encouragement and thats why I need this blog

      • scrozier Says:

        Dee, with my usual caveat that I’m not a doctor…nerve grafting doesn’t always work, but that is testable. I actually went back up to NJ about 11 months after my surgery, after a sniff test indicated that my diaphragm was working again. I had a repeat of the nerve conduction study that I assume we all had and loved. :-) It confirmed that, in my case, the nerve repair did indeed work. Perhaps it would be worth it for you to do the same? That way you’d know if rehab is worth it?

  57. MIKEL Says:

    I will be getting my right Phrenic nerve repaired by Dr Kaufman November 7 2014. I believe I’m his 60th + procedure.
    I too got the runaround by doctors who insisted that I live with this condition. I’m 52yrs old
    My journey started back in February of 2013. I was recovering from spinal fusion L2-L3. I have been retired on disability I have a very bad back this was my 3rd surgery involving my back.
    I noticed after surgery I had difficulty breathing especially at nite while sleeping I was wearing a back brace and it was pretty tight around my chest I presumed this was causing my labored breathing Once the the lumbar bone graft set and was stable the brace was removed.The labored breathing was still there but not as pronounced. I knew there was something wrong. Any type of elevation above 6k feet made breathing difficult. I really noticed this when flying.
    When I returned home the runaround began as most of you know.I really thought this condition was caused by the spinal fusion the breathing symptoms did not really start till after this surgery. It was a coincidence.The phrenic nerve is nowhere near the surgical procedure.
    As what most do nowadays I started to research my condition via the internet and I came across Avery Biomedical Devices. I inquired about the breathing pacemaker and was put in touch with Martin Dobelle. He spoke with me and recommended Dr Kaufman who practices at my local hospital 2 miles away what luck!
    I scheduled an appointment had my EMG by Dr Brown and surgery is set.
    There is 1 question I had for Dr Kaufman and it is “How did this happen?”
    He assured me it wasn’t the back surgery. It was most likely my previous career.
    I was a heavy equipment / diesel mechanic and I most likely injured my right phrenic nerve carrying something heavy on my shoulder, makes total sense. I couldn’t be more lucky as to have Dr Kaufman and Dr Brown so close to home!
    I pray this procedure works. If I get back 50% right lung capacity it will prove there is hope for this pesky condition and it will prove that I’m not crazy and the nay Sayers are proven wrong

    • Dee Ham Says:

      they have no idea what caused my diaphragm to stop working but they think it was a wreck in 2006 that began all of my problems..Had surgery on June 6th of 2014.. It is a long slow healing process . I think you will find that Dr Kaufman has done over 140 of these procedures but I could be wrong.. I know that the only other NC patient of Dr Kaufman told me that his back surgery caused his problem. He claims the surgeon cut the nerve by mistake but they never got proof…My lung specialist told me I had to live with the condition too.. but I went to the internet and well here I am four months later… doing swimming to build up or train my diaphragm to work again…Good luck…. they are great people on his team…

  58. Robert P. Mahoney Says:

    MikeL,

    I’m scheduled for the surgery on Nov 14th, a week after you. I spent 12 months chasing down a diagnosis. It’s my right diaphragm/right phrenic. I dearly hope that the surgery is successful.

  59. MikeL Says:

    Robert,

    I also hope this surgery is successful.I will be happy with 50% right side lung function. In addition to my Phrenic Nerve repair Dr Kaufman is taking care of carpal tunnel syndrome in my right wrist. I was going to have a hand specialist perform this but Dr Kaufman does this procedure also after all it’s a nerve thing.Getting two things repaired in one hospitalization make good sense to me. However there is one decision I need to make; donor nerve or a graft harvested from me.
    I want the best outcome but I have problems with numbness in my legs now and it can be quite uncomfortable. Where the graft is removed it will be numb in the ankle area. I suppose we will discuss this before I go under maybe someone on this blog can chime in with their results using “donor” nerve graft

    • Dee Ham Says:

      I had the surgery in June and used my nerve from ankle.. some numbness but worth the risk..

    • scrozier Says:

      Mike, I’m not sure we’re talking apples and apples here, but Dr Kaufman harvested a nerve from my ankle for my phrenic nerve repair. The numbness is just a tiny bit disconcerting if I focus on it, but on a day-to-day basis, I don’t pay it any attention.

  60. Rob Senatore Says:

    I had the surgery a year ago. Dr. Kaufman used a section of nerve from outside my left ankle. There was numbness but, after awhile I didn’t even notice it. No problems since and I am a runner ,so my feet are important. Good luck.

  61. MikeL Says:

    Thanks for the replies. I will most likely use my nerve tissue I want the best outcome with little complications

  62. Tom Maddalla & Jan Bush Vero Beach , Fl. Says:

    There right mike, I had mine taken from the right ankle in 2011 and don’t even notice it. They say that parts are parts, but theirs nothing like your own parts and you get to keep them too. Ha Ha We’re wishing you our best wishes. Get well soon.

  63. Judy Sewell Says:

    Hi,
    I have had a breathing problem and damage to my right phrenic nerve since a thoracic spine surgery on 2009. I stopped breathing in recovery and was on a respirator for a few days . It took me months to get a diagnosis. No one wanted to send me for an EMg of my phrenic nerve and I was insistent and finally got one. My most recent sniff test is written so poorly it makes me crazy, it has the wrong side listed and is confusing saying there is a little movement , but my right diaphragm is paralyzed. I was a trail runner and then turned to a hiker and swimmer after a hip replacement , but always very active. Now I am out of breath walking to my car and my house is small. I did just send all my info to Dr. Kaufman and have a phone apt with him on this Friday. I am so hopeful that I will be a candidate for this surgery. I found his info on line when looking up info on diaphragm plication which my pulmonologist did not recommend. He said if I can still vacuum I don’t need to do anything and will be just fine.
    I sleep pretty much sitting up right to be able to breathe and also have central sleep apnea and wonder if that is related. I am praying and keeping my fingers crossed that in am a candidate !!
    Judy

    • Dee Ham Says:

      I had the surgery June 6th. I was an avid hiker but for the year to year and half before surgery my hiking ability got worse and worse..They think paralyzed diaphragm was due to a wreck in August of 2006.. Dr Kaufman told my wife after my surgery that my nerves looked like a tossed salad. The healing process is very slow.. I am not hiking yet but trying to incorporate swimming into my exercise to build up my diaphragm.. Good Luck… Dee

      • Judy Sewell Says:

        Hi Dee,
        Good luck with your healing and getting back to hiking. I am used to slow healing, I have had 11 spine surgeries and those take quite a while to heal as well. I thought I was going to drown the last time I attempted swimming. But now I have read with the paralyzed diaphragm that swimming is a problem, I would love to get back to it. I was swimming a mile every day after an 8 mile hike when life was a little more normal.
        Thank you for your good luck wishes, I am so nervous about my phone apt tomorrow. I will post on here after it to let you know how it went.
        Judy

  64. MikeL Says:

    Well I had my surgery 11/7/2014 and it didn’t go as planned. Dr Kaufman found where my right Phrenic nerve was compressed and he released it.Due to a severe hemorrhage on my part he could not finish the procedure with a nerve graft. I lost a bout a quart of blood and had to get a transfusion. The veins in that area were not normal.
    However he was successful in curing my right hand carpal tunnel problem.
    Dr Kaufman is a great doctor he is very concerned about my condition and is keeping a close eye on me.The hospital and his staff are the BEST!!!! I have followed up with his office and he referred me to a hematologist.If my problem with the bleeding is fixed he will go back in and perform the graft if the nerve decompression wasn’t enough.

    • scrozier Says:

      Mike, thanks for the update. Sorry to hear that things didn’t go according to plan. I’m sure you’re pleased about the carpal tunnel result.

      I guess you now have some more information, which can hopefully lead toward a better result in the future. Hang in there!

    • Dee Ham Says:

      Sorry also but happy about the carpal tunnel .. Hopefully you will be able to have the other surgery done later.. God Bless

  65. Dee Ham Says:

    for those that are in the process of recovery . Has anyone found that one particular type of exercise is better than others? I am trying to walk but now that winter has come to the south I am trying to swim in heated pool at the Y but it gets VERY frustrating….

  66. Tom Maddalla & Jan Bush Vero Beach , Fl. Says:

    Hi Dee, Don’t get frustrated, even though it is. It takes time and patience. Mine took over a year just to be able to go into water above the chest. I found that a combination of pool and exercise machines i/e physical therapy worked well. anything that put stress, or made the nerve work hard seemed to do the trick but time was a big ingredient. Just keep at it. We are all rooting for ya.keep up the good fight.

    • Dee Ham Says:

      Thanks!!!! to Tom and Jan … I know I am not a patient person , Just trying to be so is tough for me. Your message came at the perfect time… I really needed it… God Bless..

  67. Judy Sewell Says:

    Next Tuesday I get my second EMG of my diaphragm, I think as long as it hasn’t improved ,which I doubt as my lung capacity has gone down that I will be a candidate. I live in the Los Angeles area and Dr. Kaufman will be here in the middle of January, I am so hoping I make it. I do have a right paralyzed diaphragm. He was talking about the possibility of a pacemaker as well as working the phrenic nerve as I have central sleep apnea.

  68. Dee Ham Says:

    Good luck Judy!!! if you have the surgery be patient !!!!!!!!!!! You have a great support team in this blog.. Use it as I have.

  69. Kathy rao Says:

    I had plication in aug of this year just saw surgeon yesterday and surgeons told me it didn’t work does plication need to be done before seeing dr Kaufman. Thx

    • scrozier Says:

      Kathy, with my usual caveat that I am *not* a doctor, I believe that having a plication will mean that you are *not* a candidate for Dr Kaufman’s nerve repair. The reason–as I understand it–is that plication renders your diaphragm inactive, so repairing the nerve will be of no use, since your diaphragm won’t work.

      But please talk to your surgeon and to Dr Kaufman. Many surgeons (in my experience) have no idea that phrenic nerve repair is possible, so the could lead you down a road that obviates nerve repair.

    • Judy Sewell Says:

      Thank you Dee Ham, unfortunately the doctor that was supposed to do the EMG walked in and said he doesn’t stick needles in the diaphragm. He only had an intern search and do the nerve in my neck. He said it was a normal study. I still only have 50% Lung capacity , but I do not qualify do to this. Dr Kaufman wants me to have diaphragm re training with a physical therapist who is qualified and if no improvement then, I will have another sniff test . I was really upset as I am or was an avid runner. Now I can barely walk up hill. So now I have no idea what is really going on. Kind of frustrated. But I am glad DrKaufman is so careful and not proceeding when the results are vague.

      • Dee Ham Says:

        Judy , i had a doctor in New Jersey do my emg two days before the surgery and he did the needle .. Dr Kaufman can arrange the test to be done up there in Edison, NJ Good luck on finding a therapist who is qualified to do re training.. You will only find a qualified one in a major city.Therapist are like chiropractors. They will all say they can fix your problem whether they can or not..

      • Judy Sewell Says:

        Hi Dee Ham,
        WEll I am in Los Angeles and DrKaufman comes here on occasion and does the surgery here so I was not going to NJ. Heather at DrKaufmans gave me a few names of therapists in LA, they are all about an hour away from me. I haven’t called yet, I emailed one, but didn’t get a reply. What are you doing to strengthen your diaphragm after your surgery. I looked on line a little last night and see one exercise on a lot of sites. I will start trying to do that today. I also have one of those devices they give you in the hospital after surgery and I should have been using it all along, but I get lazy. I will pull that out too.

      • Dee Ham Says:

        I am walking , swimming some… not lifting weights . Just trying to deep breathe when I walk.. Those that have recovered have told me that time is the biggest factor….what is the exercise you saw on the web?

      • Judy Sewell Says:

        What I saw was a practice at diaphragm breathing when laying down, then you progress to using weights on your chest . I didn’t look it up yet today, I have been trying to track down some medication that was delivered to my old address.

  70. Kathy rao Says:

    Thank you so much for answering me so quickly. Very frustrated felt great for about a month, but back to square one right diaphragm extremely elevated. The original symptoms are all returning. I will call Dr. Kaufman. Thanks again for your advise.

  71. Byron Pugh Says:

    Thank you all for your comments on this site. I had a cardiac ablation on October 6, 2014 and could not breathe after surgery. Over the last couple of months, I have had multiple tests which have revealed bilateral diaphragmatic paralysis. I have a small amount of function which allows me to breathe a little so no ventilator; however, I am now going on oxygen a night. My lungs are still in good shape so I am able to oxygenate during the day by multiple quick breaths. I am going to contact Dr. Kaufman on Monday; however, in reviewing his website QA’s, he indicates that if there is movement in the diaphragm, you are not a candidate. I have a small amount of movement on both sides, but very limited. Anyone know if that will affect my potential as a surgical candidate?

    • scrozier Says:

      Byron, sorry to hear of your issue. That sounds unpleasant at best. I think your question is best left for Dr Kaufman. Best wishes to you!

    • Judy Sewell Says:

      I would definitely leave it to DrKaufman, but in my case it was said on a sniff test that my right side was paralyzed and also that it moved a little so I was not a candidate. Dr Kaufman suggested I go to a diaphragm re training program and then if no improvement then have another sniff test. I wish you the best of luck and hope he can help you

  72. susan Says:

    I too had the surgery with Dr. Kauffmann. It’s been about 2 years. Like many writing here, I was initially misdiagnosed (MS and polio were mentioned). Your advice about researching one’s own condition is very helpful. Currently, I’m interested in following developments and treatment opportunities that may come in the future and will certainly follow your advice with regard to publications. Thank you.

    As to my case, the right diaphragm was paralyzed, but the phrenic nerve was mostly intact though there was significant scar tissue from an old and recurring neck injury. Since the surgery, I have had modest improvement. The most significant is relief from a sensation of being punched in the stomach when bending down or over. Gratefully, this sensation has almost disappeared. I also have some movement of the right diaphragm, but my blood oxygen still drops too low at night. So, I would say that the surgery with Kauffmann was worth it, but didn’t entirely reverse my condition, and I don’t expect at this point that it will.

    I am of the opinion that exercise of certain types could help, but there is very little about it in the literature that I have found, except for advice to do deep breathing exercises. I wonder if more aggressive kinds of diaphragmatic and lung exercises could be useful. I am a professor, and I notice that in the last few months, I have become weaker and shorter of breath, even though I continued my gym routine. But this has also been the time that I was on research leave and not lecturing 6 hours a week. Voice and wind instrument training develop great powerful lungs. Why shouldn’t the techniques for playing the clarinet, or singing not be helpful to those who need to strengthen those muscles that remain in play?

    • scrozier Says:

      Susan, my experience was/is very similar to yours, and you articulated it much better than I’ve been able to. I will reply at greater length when I have more time. Thanks for posting.

      • Jill Says:

        Oh, I think the singing and/or clarinet playing or playing other types of instruments that require allot of breathing effort would help. In pulmonary rehab (before and after my surgery with Dr Kaufman) we played the harmonica, I loved it!

        My surgery with Dr Kaufman was in the summer of 2012. My phrenic nerve was damaged during a routine procedure. Dr Kaufman found scar tissue on my phrenic nerve. 2.5 years later my phrenic nerve has regenerated. When I have another sniff test I’ll know if the diaphragm is working correctly or not since when I had the phrenic nerve issue the diaphragm was working in reverse. My right diaphragm still has issues as does my right lung but it appears the phrenic nerve is working again! My breathing capacity is far from normal. The lower part of my right lung is still collapsed due to the diaphragm being smashed into it. So, for me, life is greatly improved since my surgery but the overall quality of my life due to breathing issues remains somewhat challenged.

  73. Vicki Beam Says:

    Can you please contact me – my husband had open heart surgery last July – both phrenic nerves were damaged – both sides of diaphragm not working – we are looking for someone to see.

  74. Hugh Griffith Says:

    I had initially posted several months ago and incorrectly stated that I had anterior cervical surgery. I had a posterior stenosis procedure that resulted in damage to my phrenic nerve and a paralyzed right diaphragm. That being corrected my question is would you consider surgery if you were 75, not especially active, in no particular pain, but short of breath lying down or upon exertion? I’m afraid of any more surgery in my cervical region because of the possible risk of more paralysis of my diaphragm. I enjoy life, am an active RVer in decent condition, but going downhill quicker than I would prefer. Would you relax with a couple of glasses of wine, travel when you could, and slowly wind down; or have the surgery and try to grab a few more quality years? What say you??

    • scrozier Says:

      Well. We’ve moved on to existential questions!

      Tough call, Hugh. I think for me, a lot would depend on how likely you are to make a good recovery. Which, unfortunately, is probably hard to answer. I’m getting the feeling from hearing people here that the time between the initial “injury” and the surgery is a factor: the longer the time, the more atrophy of your diaphragm. But obviously there are lots of other issues.

      I would talk with Dr Kaufman and get his opinion. I personally found him pretty thoughtful about the overall chances of a good outcome, broadly speaking.

      Best of luck to you!

    • Judy Sewell Says:

      Hi Hugh,
      I agree with Scrozier, I would see if I was actually a good candidate for this surgery. I would talk with DrKaufman, I mean you don’t have anything to loose by talking to him. I was not a candidate at this time do to a few test results that were vague. So I am trying to see if my diaphragm will rehabilitate and then will test again. So if you are not an excellent candidate DrKaufman will certainly let you know. Good luck.
      Judy

  75. Hugh Griffith Says:

    Steve, I posted a comment last night for your review. I didn’t see it today and realized I used the wrong email address from my previous registration. If you feel the comment was worth posting, then use the email address below. Thanks!

  76. Paul Jeffcutt Says:

    Hi Steve,

    Thank you for your fascinating blog and story which has stimulated such good discussion. I have recently learnt that I have a partially paralysed left diaphragm, it is raised and weakly functioning. This probably resulted from cardiac sugery over three years ago. In the interim I had a series of wrong diagnoses.I suffer breathing problems and have developed asthma.

    As I understand it because my left diaphragm works properly but weakly, I am not a candidate for reconstructive nerve surgery. My specialist advises plication but I do not want to take that step until I have explored all other options. I want to try and improve my diaphragms function but can get no advice here in Ireland on appropriate breathing or other exercises. The material I have found on the internet is not focused on my condition and confusing.

    You mentioned a programme of specific exercises that you had been following for diaphragm rehab. Please could you give me some more information about these.

    Thanks,

    Paul

    • scrozier Says:

      Paul, others here have posted more specific exercises. Read over the comments carefully. For myself, my pulmonologist has recommended primarily inhalation against resistance. He gave me a spirometer tricked out with a series of filters (not sure that’s the right term) that add resistance. I also bought a similar device at the drug store.

      I think he told me that light-moderate exercise won’t do much to rehab the diaphragm…you need to be really exercising it with deep breaths.

      With my usual caveat that I’m not a doctor, I would be very cautious about plication. It will rule out other options down the road.

      Best of luck to you!

      • Paul Jeffcutt Says:

        Hi Steve,

        Thank you very much for your help. I have recently bought a device of this sort. How long do you spend each day doing this breathing exercise?

        All the very best,

        Paul

      • scrozier Says:

        Paul, I’m the wrong person to ask. I’m not a very good rehab patient. I think if you spent 5-10 minutes a day, you’d get results. But best to ask a pulmonologist.

  77. carole Says:

    Had ablation for AFib last week and now have right phrenic nerve injury. Also experiencing right shoulder pain. How long to wait to talk with Dr. Kaufman? I understand this may heal on its own?

    • scrozier Says:

      My standard caveat: I’m not a doctor, so take my comments with the appropriate dose of skepticism!

      FWIW, my symptom was also very intense shoulder pain, which seems like such an odd thing.

      Personally, I would contact Dr Kaufman soon. My reasoning: he (Dr Kaufman) is pretty conservative; I think he would give you good counsel, no matter what the eventual outcome. But especially, the sooner this is diagnosed and corrected, the better, I think. (Though it sounds like you got a good diagnosis early on.)

  78. jeff hollenbach Says:

    I have had right sided diaphragm dysfunction for several years…it has worsened since being assaulted last year. Nobody knows what to do. The sniff test was + but EMG not showing any phrenic blockage according to the physician. I am aware of Dr. Kaufman but after speaking with his PAs am sure he will not be seeing me as a patient. Even though I had to retire from the medical profession as a PA myself, I am eager to take any advice on what to do. I get SOB, delirious, fatigued, and just cannot survive like this. After doing some research I did find that my lumbar laxity may be causing muscle weaknesses with the diaphragm; but it seems no physicians I have spoken to are on the same page with me and have no idea of what to do.

    • scrozier Says:

      Jeff, sorry to hear of your breathing issues. Yes, if you’re nerve(s) are fine, Dr Kaufman is probably not the one to help.

      Keeping in mind that I’m not a medical professional of any kind, the only thing that occurs to me is that some folks here have been helped by a regimen of lung (diaphragm) rehab, usually under the care of a pulmonologist.

      In any case, best wishes to you!

    • Judy Sewell Says:

      Jeff you sound like me. I had damage to my phrenic nerve during a spinal surgery of my thoracic spine. I had an EMG of my diaphragm a few years ago and it showed damage. So I contacted DR Kaufman and was on his schedule for last Jan here in Los Angeles. He did want me to have a repeat of the EMG, I went to the same hospital and the physician walked in the room and said he does not stick needles in diaphragms. so he only tested one time on my neck and wrote a report saying everything was normal. I also had a repeat sniff test where the doc was not paying attention, he wrote down the wrong side , and said it was paralyzed and it worked in almost the same sentence. so my surgery was cancelled. I am very short of breath as there was a lot of scarring to my lungs at this botched surgery as well. Dr Kaufman’s assistant suggested I try diaphragm rehab and get back to them in 6 months of no progress. I understand your frustration. My lung capacity had gone down to 43% last year and now is about 55% , but I try to hike and it is darn hard and frustrating. I also have severe back problems and am walking all hunched over which is how the doc who refused to do the EMG said my problems lay. I am seeing my pulmonologist in the summer and I will try to get the EMG done with the same doc who did it originally and is not afraid to do it., I have no answers, just wanted to empathize with you.

      • Dee Says:

        I had the surgery one year ago and all I can tell you is that recovery is very very slow… My pulmonologist told me that I had to live with my paralyzed diaphragm.. Living in a small town finding anyone smart enough to prescribe or direct one in diaphragm training is a joke. We drove to NJ to have the emg and to have the surgery … from NC .The nerves involved with the surgery were like a tossed salad Dr KAUFMAN told my wife. My paralyzed diaphragm probably came from a wreck 8 years before..had no recourse with insurance since I HAD TO SETTLE FOUR YEARS AFTER MY ACCIDENT and who says insurance dont have things figured out.. I wish all of you good luck. Although my recovery is slow I WOULD DO IT ALL AGAIN….DEE

  79. jeffrey hollenbach Says:

    Judy, I can empathize with you also. Your story is very similar to mine. I had a needle diaphragm EMG two weeks ago and it has made me worse. I also had a second sniff test by an idiot physician who was not paying attention. I tend to be very frustrated with the people in healthcare since I have a lot of experience. I am scheduled to see a pulmonologist next week at Hershey Med Center, but am preparing for them to either tell me I am crazy or seek out Wikipedia to seek what I am talking about. The doc who did the EMG listed my report as right diaphragm disorder of activation not r/t phrenic nerve. How do u function? I cannot even take a few steps without my heart racing or getting overall fatigued. I also have had several spinal surgeries…Hopkins told me once that they do not know of anybody in the USA who has had so many (12)…and I need more but nobody will touch me. It all happened to me back in 1995 being hit in my yard by a drunk driver. What thoracic level did u have surgery on? Why? My mother had a kyphoplasty done at T4-5 a few months ago due to mets CA from her lung. She is 81…I am 52 but I feel like 95. We both have severe DDD (Degenerative Disc Disease) and osteoporosis. Did u reschedule surgery with Kaufman? Have u ever had a diaphragm needle EMG? It is horrible…I have had a lot of shots and tests in my life, but this took the cake!! Not to scare u but maybe it is not worth getting…seems like Kaufman prefers the + sniff test for more of a reason. When does he come out to CA? There is a doc at Jefferson University Hospital who saw me when I was getting the EMG. He does Plication and will also consider phrenic grafting he told me. Across the country these two are the only groups I could find. His name is Weinstein. If u want info on him I please let me know and I will give it to you. Thanks for writing me…do not hesitate to write back. Maybe we can help each other get proper care.

    • scrozier Says:

      The diaphragm needle EMG is indeed unpleasant, but it doesn’t last long. I went through it twice (in the name of science :-) ).

      • Dee Says:

        i had the needle emg done in NJ and although painful have NO regrets … the doctor doing it was very professional and thorough.

      • jeffrey hollenbach Says:

        Wow… we are like mirror images with diagnoses and symptoms…I have one level left cervical and since being assaulted almost killed last year it is compressing. I also have severe lumbar laxity…two times it was supposed to be fused at multiple levels but for strange reasons surgery was decreased to laminectomies. I have moderate thoracic scoliosis and severe sleep apnea also and just had lab tests for endocrine concerns. Maybe I will have to consider a schedule II like Nuvigil to live. It is worrying about getting every breath that scares me the most. You and I are very much in the same boat. Just walking in WalMart today took my concerns. It is frustrating. I do have Christian beliefs to keep GOD first in my life, but it has been hard. Anyway…you mentioned a discogram…I forgot about those…they were horrible I have had two. When u had the EMG for diaphragm did the doc cause spasms across the abdomen and severe pain with the needles? I think my rehab doctor was nothing special. I should hear by tomorrow if the pulmonologist at Hershey will see me…I spoke with his nurse today and she said she would call me back tomorrow. The visit was originally for nodules throughout my lungs and body…they now seemed to be r/t a medicine that I am on that can cause cancer. I have to get off that and on another and get chest CTs every 3-6 months to r/o any spreading. I am not worried about the nodules there it is in the neck and groin that cause most pain. I have some messages out to physical therapists and with my daughter who is an occupational therapist for specifics on diaphragm therapy. So what is our future…should we expect our diaphragms to totally fail? Plication and/or pacing is the only option if Kaufman is not doing phrenic grafting on us. I don’t even think there is any doc in the world via the internet to do much about it. I heard Cedars Sinai is a great hospital…have u checked there? I have family in Irvine who I have not seen for over 35 years but did visit them once when I was a teenager. I would go anywhere for help if anyone does anything for diaphragms!! The one area that I feel frustrated in that we do not share is that I am on disability. I cannot stand not working not helping people but along with memory issues, post concussion syndrome (assaulted and stabbed with a 8″ knife); u are tougher than me and still working–kudos to you!! I know I have many medical reasons to be able to do this but have a lot of respect of you for this. I gave up working as a physician assistant (PA-C)…playing doctor for many years. I was an R.N. prior to that…it is my personality to help and care for people. Now I sit around and get physically worse and spoil my three cats. Sorry to talk so much…I will let u know via your email address if that pulmonologist will see me. fuzzyj11@comcast.net

      • Judy Sewell Says:

        Jeffrey, I sent you an email to continue our conversation.

  80. jeffrey hollenbach Says:

    Mr. Scrozier…where are u located? I can see we are two hours apart.

  81. Judy Sewell Says:

    Hi Jeffrey,
    I did have the needle diaphragm in about 2011, I don’t really remember it being that bad. I have also had 11 spinal surgeries and also have osteoporosis. I think the worst test I ever had was a discogram . I had some very bad thoracic discs, one in particular, T7 it was horrible, I was crying for awhile. The pain is short lived thought, but I do remember thinking it was worse than childbirth.
    I don’t know how often DrKaufman comes to Ca. I just knew he was coming last Jan. I have not contacted him again. I am going to see my pulmonologist and ask for repeat testing in hopes I get a decent doctor doing the tests. I have not gone for formal diaphragm training as DRKaufman’s staff suggested, as my pulmonologist said what I do for exercise is harder than any formal diaphragm training. I do still go hiking a few times a week. I am slow as anything and it is very difficult, but I used to be a trail runner and long distance and it kills me to not do anything. It is difficult to be so impaired. Even a group of 4 year olds with their parents passed me one time, pretty much everyone passes me. I don’t go very far. I am always fatigued. Do to money issues and a divorce, I really need to work full time, but I cant figure out how my body will handle it and so far I haven’t found anyone to hire me anyway. I also have sleep apnea and pituitary disease. All cause fatigue. I have been prescribed nuvigil and when needed I certainly take it.
    My thoracic surgery that caused the damage was at T7-8. I have had surgery on all levels from C4-L4. I am fused in that whole area. now I am walking all hunched over and am speaking to a new spinal surgeon about straightening me out. If my bone density is strong enough to handle it. I am sending my email, maybe we can communicate this way if it is not all appropriate for this blog.
    It is sewell4444@gmail.com. I do wish you the best of luck at the pulmonologist . Let me know how it turns out.

  82. Cathy von I Says:

    Please email me information on the doctor. Finding a good pulmonary dr. And thoracic dr. Is difficult. I have pherenic nerve damage and paralyzed right diagpram. Ling capacity 50 percent. Live in San francisco Bay Area. Approached Stanford no luck!

  83. carole Says:

    Flying out to Utah next week. Worried about altitude in Park City and flying in general. At least it’s not humid there. Hard to breathe in this humidity. Any suggestions?

    • scrozier Says:

      Carole, so sorry…I was on vacation and didn’t get to reply. I imagine this is history by now. I had a similar concern when going to mountainous Ecuador last year, but I didn’t have any (much) trouble. Obviously, everyone is different. To relieve my anxiety, I just made sure I knew where the nearest hospital was! I don’t notice it at all on commercial airline flights.

  84. Linda Harrison Says:

    Hello Steve. Thank you for your blog. I have been feeling all alone with this misery! I have been diagnosed with Right-side phrenic nerve damage. I had open heart surgery in February 2015 and was left with this damage. I am in the early stages of working with a Pulmonologist. He wants me to do physical rehab and thinks this will help with my breathing. My biggest concern is pulling air in. It seems it is an on-going effort that should get easier over time. This week I have developed a pain at the lower edge of my rib cage. Is this normal? Or should I be looking for a reason other than the diaphragm? The pain is not constant. Could it indicate that the nerve is beginning to function again?

    • scrozier Says:

      Linda, sorry to hear of your issue. I’ve heard that this happens during heart surgery occasionally.

      I’m not competent to answer your questions, but a thought is that you might want to Dr Kaufman or a neurologist. Some pulmonologists don’t seem to understand this problem.

      Good luck!

      • catpowered Says:

        Robert Senatore I was initially scheduled on your date September 13, 2012 then put it back to the 20th. I have to say my experience was very poor. After coming back home I ended up in the hospital with MRSA and Psudemonas infections obtained during my surgery. My surgery was at the Jersey Shore Medical Center. It has been a terrible road with no recovery. I probably would do it again but just use caution when you are dealing with people half way across the country that it really became a mess. I will not go into great detail but do think it through thoroughly and have a plan of action in the case there are complications. It almost killed me.

  85. Rob Senatore Says:

    My surgery went well on Friday the 13th of September 2013 at Jersey Shore Medical Center . The recovery has gone ok. No great success with getting my left diaphragm back to work. 15 months post surgery I had another fluoroscopy done and an EMG, Both confirmed the diaphragm is still inactive. Dr. Kaufman told me it may take 2-3 years to reactivate or it may never come back. I am trying my best to continue doing physical activity and keep up hope that someday I may have use of my left lung again.Sorry to hear the problems you had. Good luck to you.

    • catpowered Says:

      Glad to hear you are ok. Sorry for the delayed recovery. Dr K wants me to come back out and do an EMG NCS as well and offered a pacemaker. I declined for now. Keep the faith. I’m struggling quite a bit but keep plugging along. Slow and out or breath all the time it seems like. Many Gastro issue and now a curvature of the spine where the working diaphragm is pulling left That’s my major issue I’m dealing with now. anytime you want to chat fire me your number and I’d be glad to share stories and anything that could help you.

  86. Brenda Jordan Says:

    Hello everyone,
    I am VERY grateful to find this site that is so informative. I was diagnosed by sniff test today with left phrenic nerve paralysis. I believe mine was caused by nerve block for rotator cuff surgery. It is overwhelming because I have never known anyone with this diagnosis. It appears to be a complicated condition and I want to educate myself as much as possible. I see my Internal medicine Physician tomorrow to confer about prognosis. I feel much better after having read this blog. Does Dr Kaufman only do surgery in NJ and LA? I live in TN.
    Steve, I would like to have contact information for Dr Kaufman please. Thank you.
    Thank you all for sharing your experiences. Makes me feel not so alone. I am 62 today.

    • catpowered Says:

      Hi Brenda. You can find Dr Kaufman at http://www.advanced reconstruction.com. I talked to him a few months ago and he mentioned doing procedures in Cleveland also but to be honest I’m not sure it would be the phrenic surgery. Those are typically New Jersey and UCLA. He will make you wait usually up to six month but since you know why happened demand to get to him ASAP. Do not take no for an answer. I know someone from here in Indiana that had exactly what you had done with the same result. Nerve block after shoulder surgery. Paralyzed left side. Dr K operated on him but it wasn’t until at least a couple years after the onset which ended up being too late. Again don’t let anyone make you wait. I my self didn’t have a good experience but I guess I’m the one in a hundred. Anytime you want to talk email me at catpowered@comcast.net and I’ll be glad to exchange phone info. Good luck and get on the phone.
      Thanks, Mike

  87. Brenda Jordan Says:

    Thank you very much for the information Mike. I will definitely contact Dr Kaufman.
    I understand the sooner the better with this diagnosis after reading this blog. So little truly helpful and insightful information out there except A Million Better Things from Steve Crozier. Thank you Steve for all your research and hard work and sharing the information with us who share this uncommon health issue. Much appreciated!
    Brenda

  88. Brenda Says:

    Joan thank you very much for your response about flying internationally with phrenic nerve paralysis. It makes me feel much more confident about flying. Much appreciated. I hope you enjoy your trip to Europe. Regards
    Brenda

    • Joan Marven Says:

      You are so welcome Brenda, I hope you get to Australia to see your family, I’m planning on a trip to New Zealand next Jan/Feb 2016.
      I don’t feel any apprehension in going on such a long flight, it’s only 4 hours longer than my trip to the UK. I do always get mobility assistance, I find the long walks in the airports very taxing, just a thought.
      Take care
      Joan

  89. Brenda Says:

    Dee and Judy
    Dee I believe if I remember correctly you had surgery for your phrenic nerve?i am so sorry you did not have a complete recovery.
    Thank you very much for your input about flying. I really appreciate hearing from those of you who have had experience flying with this health issue. I am so sorry you both are having some tough days. Take one day at a time and enjoy each one to the fullest. Hope you get to travel
    soon. Take care of yourselves. God Bless You.
    Thanks Joan!!

    • catpowered Says:

      I have flown a few times since and will be again Saturday. Swimming is what gets me. No air capacity against the pressure. When flying the cabin is pressurized so actually breathing is aided.

      What I am curious of us people who have actually had the survey graft and freeing up of the phrenic who have confirmed diaphragm movement and improved PFT scores. I am personally in communication with four others who have had the surgery with only one having a confirmed moving diaphragm post surgery. That recovery the surgery was done a few months maybe four after diagnosis. A second person suspects movement but doesn’t have the nerve to get the sniff test. I have had two X-rays, two sniff tests since with no improvement since surgery September 2012. I am curious as to whether the surgery is as successful as advertised. I have worked with specialists in diaphragm retrain since and to be very honest the take I got from coming away from that was the teaching of accessory breathing will improve your PFT, capacity by easily 10%. The gain can be recognized as a success of the surgery in reality the rehab is the gain with or without the repair. I’m not trying to debate. If it’s early I think there is a chance. Anyone care to give an educated opinion please do.

    • Judy Sewell Says:

      Hi Brenda, good luck with your travels. Catpowered, I know what you mean about swimming. I also have the disadvantage that my head is sitting too far forward and I cant bend it back to lift my head out of the water . It broke a few years ago. I used to enjoy swimming. About a year ago I went to my gym pool and just started trying to swim, I almost drowned. someone saw me and suggested I just walk in the water. I had no idea the paralyzed diaphragm would do that. I have been exercising for 6 months now as DRKaufman suggested. I had been on his surgical schedule here in Los
      Angeles last January, but I had a sniff test that was inconclusive by the writeup and also I went to have another diaphragm ultrasound and the doctor walked in and said he did not put needles in diaphragms. He then wrote a report to Dr Kaufman saying everything was normal and he never even did the test . I tried to reschedule with someone who would do it , but ended up not having enough time and DrKaufman told me to exercise, diaphragm rehab for 6 months and if no improvement to repeat those tests . I am now having major reconstructive spine surgery this Wed and then again in 6 weeks but after recovery I will try again for the surgery.
      I am waiting for replies to your question Catpowered.
      Judy

      • Dee Says:

        I feel relieved to hear your comments about swimming.. I too use to be an avid swimmer , even coached a team and taught.. but now swimming one lap is pure hell…. trying to get back into hiking but have not done any but easy ones,,,I do walk 3 to 5 miles. and push mow my yard, which is at least keeping me active… I even took up pickle ball. and am having a blast playing… might try it???

      • Judy Sewell Says:

        Dee I am going to have to look up pickle ball!! I do go hiking, I gave up my strenuous trail that I love. I go to a gentler one, I don’t go very far, maybe 2 miles up. It is so darn difficult. I also sweat a lot and have the deformed spine. Actually today is my last chance to go hiking before my spinal surgery and I just can’t decide if I am up for the challenge. I have been lots of times, but the last time it seemed harder. I live in southern California and the trails are everywhere. I wanted to join a hiking club as I always go alone, but I go too slow.
        Judy

      • catpowered Says:

        I’m curious what spinal surgery??? I have the curved spine because of the one side pulling to the left. Three herniations now. The more I do the worse I hurt.

      • Dee Says:

        if it makes you feel better our hiking club has gotten so strenuous we are not sure if we will stay.. and we started the club. Good luck with your surgery… know that friends is Carolina are praying for you

      • Brenda Says:

        Thank you very much Judy.
        I am very curious about all the folks on this blog who have had surgery by Dr Kaufman. If you have had surgery would you mind posting about how you are doing and how much improvement you have had…if any? It would be great to have that information.
        Also I am newly diagnosed (June 3) so I am still trying to learn as much as possible. I have a question: I have acid reflux.. Have had for years and take prescription RX for it and its always worked. Since being diagnosed with Kraft phrenic nerve paralysis, I have major heartburn every evening. Have any of you noticed this problem? Just curious if its related at all.
        Thanks much.
        Brenda

      • Brenda Jordan Says:

        LEFT phrenic nerve paralysis….typo… Sorry!!

        Sent from my iPhone

      • Judy Sewell Says:

        Hi Brenda. I also have acid reflux and a hiatal hernia. I did not notice a difference since my diaphragm has been paralyzed. I have had GERD since about 2005. I went through many prescriptions before finding aciphex . I used to take it twice a day, but since it causes bone issues I have weaned down to once a day.
        Judy

      • Brenda Jordan Says:

        Judy and Dee Thank you for getting back to me about the acid reflux. Much appreciated! Brenda

        Sent from my iPad

        >

      • Dee Says:

        no heartburn to speak of

  90. catpowered Says:

    I meant surgery graft. I can’t edit. Sorry.

  91. Judy Sewell Says:

    catpowered I have had 11 spinal surgeries already. I am all hunched over now. My lumbar spine is curved in the opposite direction of what it should be. My neck is way too far forward. I had broken it a few years ago and it was put back on too far forward. so this new surgeon I found is going to try to straighten out my whole spine. He said it will be very difficult. so Wed he will do surgery from the front and back. All lumbar from T10- L5 and to my pelvis. the fact that I am all crooked might be contributing a little to my poor lung capacity. It may improve up to 10% is what my pulmonologist thinks. I am sorry you have back problems too , they are miserable. I also have 2 fractures in L5 and my other ones have not totally healed yet do to the deformity. I am just praying my spine is not too messed up so he can help me.

  92. Judy Sewell Says:

    Thank you so much Dee. I am sorry your hiking club has gotten away from you. I guess you need to start a new one now!

    • catpowered Says:

      Haven’t heard from anybody in a while. How is everybody doing? It’s a hot summer here in Indiana the last couple days but before that has been very mild. Makes the breathing a little bit better you know.

  93. Judy Sewell Says:

    Hi Catpowered I had my reconstructive spinal surgery about 4 weeks ago. I am only allowed to lift one cup of coffee, for the next 8 weeks, no lifting or twisting or turning. I was going good for about 3 weeks then last week, I got so tir3ed, Sunday I slept from, Sunday night through Tuesday morning at 11am. Only woken by the dog. so today I went to the lab to have iron panels checked and cortisol. I guess a few days will tell if it is anything or just plain exhaustion., Then next month I go to see my pulmonologist to see if I havec any small improvement in lung capacity I hope so!! TAke care everyone. Oh by gte way I am standing up sgtraigher. Yah hoo

  94. James Says:

    Glad to have read this. What kind of Doctor is appropriate to do the phrenic nerve test or nerve conduction test as some call it? I have seen a general doctor and a thoracic doctor so far and no one has brought up the word, nerve. Plication was brought up.Just waiting now…(3 mths wait then return) In other words, how does Dr. Kaufman qualify you as a candidate for his work?

    • scrozier Says:

      James, I believe that a neurologist does the nerve testing. Many of us patients of Dr Kaufman had the nerve tests done there in NJ by a doctor that he (Dr Kaufman) recommends and works with.

      With my usual disclaimer that I am not a doctor: be cautious about plication. I believe having had plication would make you ineligible for the phrenic nerve repair surgery that Dr Kaufman does.

      As to how Dr Kaufman qualifies you, I think that’s best left to him and his team. If you need contact info, let me know.

      Best of luck to you.

      • Gary Severson Says:

        I have a left hemi-diaphragm paralysis as of last April. Have had many tests but am frustrated & found this blog tonight. Could I please have Dr.kaufman’s contact info. Thanks, Gary Severson Mpls

      • genemanhart Says:

        Gary, I had bilateral diaphragm paralysis when my condition first appeared. After 15 months my right side diaphragm returned to normal but its been 3 years and my left side is still paralyzed. I suppose recovery depends on the damage to the nerves but you are still are in the window of possible recovery. My paralysis was caused by a simple virus and fever and apparently my right side nerve was not as damaged.

  95. James Says:

    scrozier – Thank you so much. You are loud and clear regarding the disclaimer. I am on notice. And, I am cautious about plication. I have found Dr. Matthew Kaufman’s name and number at the appropriate hospital. I assume that is all I need to get the ball somewhat rolling. (Correct me if I am wrong if and when you get time.) I’ve read all you have written herein, and all who have made entries. It is wonderful dialogue for someone who has come on to this, on or about the first week of June, 2015. thks…

    • catpowered Says:

      I have found that the sooner the better to address this. From the ones I have talked to the success rate is better in the first six to nine month than a year out. I didn’t have a great experience but many have been pleased as it is the only thing besides waiting you can really do to make improvement. Good luck.

    • scrozier Says:

      James, I sent you Dr Kaufman’s contact info by private email. It’s actually the contact info for the person who coordinates his patients for this condition.

      It’s probably worth reiterating that the vast majority of doctors, including pulmonologists, are unaware of the possibility of phrenic nerve repair. It’s interesting that no one has ever said, “nerve” to you. If you’ve had a diagnosis of paralyzed hemi-diaphragm, then phrenic nerve malfunction is the only cause I know of. (But again, I’m no doctor!)

  96. Tony Segreto Says:

    Thank You for the research tips,I have muscle wasting of the diaphram from ALS.

  97. terry selb Says:

    I was recently diagnosed with 100% paralyzed left diaphragm (idiopathic) and I asked my Pulmonary local Los Angeles Doctor with 40+ years in practice) about Dr. Kaufman he shrugged and asked” Why would you ever want a plastic surgeon to perform neuralgic surgery one you?”. I thought that was kind of a good question.
    On the other hand, I am like all of the other bloggers on here….the doctors say” learn to live with it”. Well as all of the preceding posters noted, its pretty miserable.
    Judging from the posts I have read here, it sounds like Dr. Kaufman’s patients have had mixed results. Its really difficult to know what to do.

    • scrozier Says:

      Terry, I’m no expert, but I think plastic surgeons do a lot of nerve repair. Part of the nature of their work. Also, Dr Kaufman has specialized in this particular surgery. I did a lot of looking and talking to neurosurgeons and none of them were interested or even thought it was possible.

      Though my clinical recovery has not been thrilling yet, the nerve repair itself seems to have been completely successful.

      I would ask Dr Kaufman what his current thinking is. What have his results been, now that he has quite a few under his belt? I know that his team did some results surveys.

    • Brenda Jordan Says:

      Terry Selb
      Hi Terry
      I too was diagnosed with left phrenic nerve paralysis in June. It is a devastating diagnosis and like you said, changes your life dramatically.
      Question: have you figured out what possibly caused your paralysis? I believe mine was caused by a nerve block given for shoulder surgery. I can’t prove it but it’s my belief.
      I have hesitated to have surgery also because not that many surgeries have been done. In addition, I do not know the true prognosis of the patients who have had surgery. This is major surgery, not day surgery. I want more information and have 100% reliable results of patients who have had the surgery.
      Brenda Jordan

    • Brenda Jordan Says:

      I know exactly how you feel and none of my doctors know anything about this issue and frankly don’t seem to want to discuss it…. Everyone here understands that I am sure. I wish there were more doctors doing this type of surgery and I wish they were educated in the subject. My pulmonologist said, “It won’t kill you” but I am not sure that’s true. I think it could have such an effect on other organs that it could cause major health issues and certainly affect longevity.
      Does anyone have those kind of answers? I have been to a neurologist, a neuro surgeon, spine surgeon, pulmonologist, internal medicine dr and none really answered my questions and only pulmonologist was familiar at all with the PPN.

      • scrozier Says:

        Brenda, I happen to be married to a doctor (pediatrician). Her only health concern, other than the obvious one of reduced lung capacity, was the possibility of pneumonia, due to the diaphragm impinging on the lower lung. I addressed this with my pulmonologist; he gave me a rigged-up device to force air into my lungs, hopefully expanding the lung and keeping it free from fluid build-up.

  98. terry selb Says:

    My biggest fear is a false sense of hope. This has been a truly life altering problem that I have been learning to cope with and accept as a part of my life for the past 3 months. I am no spring chicken (65) but otherwise my health is great and I was leading a very active life. But I do find all of these posts to be EXTREMELY interesting. As you know, this is a rare disorder and there isn’t a whole lot out there on this.

    • catpowered Says:

      I found that what Dr Kaufman considers a success is a bit disturbing. After surgery if you feel better its documented as a success. Many factors go into why you’d feel better without the diaphragm working. Breathing techniques they ask you at certain retrain centers to open up the air space more can make you feel better. He considers that success. You can do that without the surgery. I had the surgery and had a horrible, life threatening experience. I survived thank goodness. Another gentlemen I went to therapy with that was Dr K’s patient got his surgery done 4-6 months from his onset. His diaphragm was moving at a better than 50% motion or say capacity than after his onset from what would be considered normal. I’d think the surgery to free up the nerve helped. I think Dr also wants to install electrodes on the diaphragm now during surgery to assist in recovery with a pacer. He offered that to me a year out from surgery but I honestly can’t take much more. I now have multiple herniated discs from the spine now being curved to my left from the good diaphragm pulling that I need far more than more air now. I’m 46 and trying to get things paid off so I cam relax and enjoy life.

  99. Robert Senatore Says:

    I just passed the two year anniversary of my surgery by Dr. Kaufman. I still have minimal use of my left diaphragm , therefore very little function of my left lung. I used to run marathons. I now cannot run a mile without stopping. i have developed a run/walk technique that enables me to do 4 mile races. My finishing times for these races went from 30-32 minutes before the illness to 48 minutes post surgery. I do the races now for enjoyment and nothing more. I am 64 years old and this illness is the worst part of my life. Improvement in my breathing is still possible so I am thankful for the surgery and have told this to Dr. Kaufman. I send him periodic progress reports. Good luck to all who suffer from this situation , don’t give up and don’t accept ” just live with it” as the final answer.

    • terry selb Says:

      I think the mere fact that you can run/walk ANY significant distance is amazing. I note that you state that you have “minimal use of left diaphragm”. Is this minimal use a direct result of the surgery by Dr. Kaufman or was this minimal use part of your original diagnosis?

  100. Dee Says:

    i had the surgery just over a year ago. There is no cause that we know of except for a wreck I was in 2006. Not my fault by the way 16 year old kid ran a red light. Anyway I just turned 65 and use to be an avid hiker.. All of that is over… but like others there is improvement compared to my hiking pre- surgery. My wife and I have hiked up to 12 miles but with very little elevation gains. HILLS or mountains are killers for me…I too do not regret my surgery. My wife says she can tell I am breathing better..yes it is depressing and yes it changes your life and yes in many cases someone else caused your illness. But I ask , what choice do you have..
    curl up in a ball and do nothing or deal with the cards you now have and move on….LIFE IS TOO SHORT.. I HAVE CHOSEN TO MOVE ON…

    • Brenda Jordan Says:

      I am curious. Of those of you who have had surgery by Dr Kaufman, how many were covered by insurance?
      Thank you.

      • catpowered Says:

        Mine was for the most part. Remember to check with and about Dr Kaufman. Ask who his backup, assistant will be. They charge you double Dr Kaufmans fee by the way. They don’t tell you that. You will also have a charge for the graft being pulled from the ankle. Anesthesia was another Dr. The hospital is also a separate entity. I used his staff to assist in my checks for coverage. I was to,d all is good then had to quarrel with the hospital about their charges not being covered. All in all I was out of pocket about 5000. I had complications which I believe led to some fees being waived. I was billed between the above I spoke of:
        Dr K 69000
        Dr Elkwood 59000 ( I never met him by the way)
        Jersey Shore Nedical Center 29000
        Dr Valkery 8000 (spelling?)

        Dr K promised you’d pay no more than 10000 out of pocket. Remember that is to him. Others you may owe. Mine worked out ok. My monies were out to the Anesthisia Dr for about 4500, that was my largest payout other than travel expenses. I’ve talked to one guy who paid over 20000 to all and another who had zero in the end.

        Do your research. Get things in writing. Don’t accept those vague statement letters from your insurance that say your covered then there is the fine print saying but we may still not pay.

      • scrozier Says:

        My surgery was largely covered by insurance. I paid some thousands of dollars of deductibles, copays, etc. Maybe around $5000?

      • Dee Says:

        we had to meet out of pocket for in network. and of out of pocket for out of network…. wonder who decides this… the insurance company so they have to pay less and you more.. we were out approx 10000

  101. Tom Maddalla Vero Beach, Florida Says:

    Mine also was covered by Medicare and my Insurance.Mine was caused by a needle prick to the frenic nerve during surgery by the anesthesiologist for a rotator cuff repair. To be fair the anesthesia procedure is a Blind procedure, and they can not see exactly where the nerve is when they do the procedure, Thus that is why many of us are here. It isn’t worth it to point the finger, or call names so i Just gave him a big hug and told him to refer his Unfortunate patients to Dr.Kaufman and his Wonderful teem ,Whom I might add that most doctors are still not aware of this Wonderful procedure.

    • scrozier Says:

      Gotta say, Tom, I love your attitude! Not sure I could have been so forgiving, but I’d like to think I could.

      • Dee Says:

        I too would hv a problem being so forgiving.Two primary reasons. Rotator cup surgery is very common today, I have a lot of friends that have had the procedure with no issues ..and number two is the reason anesthesiologist get paid the big and I MEAN BIG BUCKS is not to make mistakes… All of us might feel different if we had to pay a LOT of money our of our pockets.

  102. Rob Senatore Says:

    My surgery was partially covered by my insurance. But , the many out of network procedures from doctors not in my network were mostly paid by me. I discovered that when the insurance company say’s you are pre approved for surgery , procedures, hospital stay etc. it does not mean they will pay the amounts that are submitted after the fact. I reached a point where everyday for months when I got home and opened my mailbox there was some sort of medical bill. After awhile I sat down on my living room floor and just sorted thru all these bills. Total bill for all the tests and surgery and hospital
    stay came close to $ 125,000. My insurance paid close to $ 50,000.
    Out of the difference I was responsible for around $ 10, 000. Just happy not to come home and find bills in my mailbox everyday.

    • Brenda Jordan Says:

      Rob
      Thank you so much for all the indebth information about all the expenses for surgery and how its all broken down.
      That is great information to know. And to know the particular questions to ask. Thanks for taking the time to relay all this information. I really appreciate it.
      Brenda Jordan

  103. Dee Says:

    agreed on empty mail box. my total bills were closer to 200000

    • Brenda Jordan Says:

      Thank you to all who answered my questions about the cost of the phrenic nerve surgery. I appreciate very much each of you taking time to respond.
      Tom, it sounds like you have had the surgery and it was successful. Is that correct? How long after you were diagnosed with PPN did you have the surgery?
      Tom, I think its great that you are so forgiving. However, it is not a blind guess. They used an ultrasound to put the catheter in my neck for the nerve block. It was there for two days and nights as I went home with a bulb of Litocaine around my neck that went in automatically at programmed intervals. If I was having major pain, I could squeeze the bulb to get a bigger dose. I think that is not safe because the catheter is so close to the phrenic nerve…..
      My issue is this: had I known that there could be even a 1% chance that this could happen, I would NEVER have let them do the block. It’s for pain control I know. But give me pain for a couple of weeks I will deal with it even though its very painful. I would much rather have that than a paralyzed phrenic nerve. Just my own personal opinion, of course. I don’t think they should use the nerve block at all.
      I think its wonderful that some of you have had success with the surgery. It must be such a wonderful relief. I keep praying for healing. I have been told that since mine was caused from the nerve block there is a chance it can heal but it could take over a year.

      • catpowered Says:

        Brenda I would suggest that if you’re serious about the surgery the only person I know that actually had a success with the diaphragm moving post the gentleman was the quickest to the surgery table from diagnosis. The doctors tend to ask you to wait at least six months but up to year and everyone that I talk to that it waited that long did not have success. Even though I had a horrible outcome I think if I had to do it again I would’ve done it much sooner. My surgery was 12 1/2 months post on set. My onset was idiopathic I woke up one morning with the most horrible pain in my neck and shoulder I’d ever had and it lasted for days. The breathing over the first two weeks got progressively worse to where I couldn’t even hardly walk 50 feet without stopping.

      • Tom Maddalla Vero Beach, Florida Says:

        Hi Steve : To answer your question, I was in distress trying to walk three hundred feet without stopping to get myself ready for the trip back. The shoulder surgery was a year and a half earlier and I could not get a straight answer from the lung doctor. She told me it must bee C.O.P.D., and gave me lung exercises to strengthen the Lung.She said [You Will Just Have To Live With It.] My right Forearm and small finger seemed to be numming and the finger seemed to curl into the hand. My wife was searching the internet for answers and found Dr.Kaufman,s site and made the call. Dr. Kaufman sent a Script to get the Sniff Test to see if the diaphragm was moving,and sure enough It was barely moving.Two weeks later we were in New Jersey for the surgery. We also looked into Plycation and even electronic stimulation of the diaphragm —[Pacemaker] But it was a no brainer, and we went with Dr. Kaufman. It seemed to me that I could breathe better right after surgery, and he said the latest sniff test after the surgery showed a 50% improvement it still took three years to a full recovery. The diaphragm is back to full recovery. The Lung has Re-Inflated and the stomach has moved back down where it is supposed to be, as it moved into the empty space ware the lung was. Hope I answered your question, and if anyone else needs to ask a question, I will always be available here for them to get the answers they need.

      • scrozier Says:

        Tom, that’s great. Sounds like a textbook case of how this is supposed to work. I’m not 3 years out from surgery yet, so you give me hope!

  104. terry selb Says:

    I again want to say that this little “mini community” on this blog is of tremendous help to me. Its reassuring to know that I am not the only one stuck with this disorder.
    Catpower, your statement that you only know of one person who actually had the diaphragm moving post Dr K surgery is disturbingly interesting to me.
    Has anyone been to an actual neurosurgeon for this problem? I would think that if there is a surgical neuropathic solution that this is the person you would see, yet I can’t find ANYTHING that supports this notion. Does anyone know?

    • scrozier Says:

      Terry, as luck would have it, two of my close friends are neurosurgeons. One of them, Dale Swift, gained some international fame for separating two boys from Egypt, conjoined at the head, several years ago. The other is the Chair of Neurological Surgery at UT Southwestern. Which is simply to say that these two surgeons are at the top of their field. I discussed my situation with both. Both said, “we can’t repair the phrenic nerve.” They referred me to a plastic surgeon and a general surgeon, the latter for consultation about plication.

      So, it seems that this just isn’t in the realm of neurosurgery.

      • terry selb Says:

        Thanks for your helpful response. I think that answers why I can’t find anything from neurosurgeons. Just so I understand, were they the ones who actually referred you to the plastic surgeon discussed in this forum?

      • scrozier Says:

        Terry, no, they did not refer me to Dr Kaufman. My original blog post here explains how I found Dr Kaufman. They referred me to a local plastic surgeon, who was quite helpful.

    • catpowered Says:

      I have spoke to three people. Met another. Emailed another. Only the one I met has movement.

      Again a diaphragm retrain specialist does you as much good if you’re downstream. Eli Lopes in Indianapolis is great. She is a branch off of Mary Massery in Chicago. These gals are great and gave me more help and relief than the surgery.

  105. Dee Says:

    Tom ,, thanks for your comments.. since I am only a year out from post surgery I HAVE RENEWED HOPE…. I am also a very impatient person, wanting to hike mountains again instead of accepting hills. I hv had stomach issues such as bloating etc and my gastro doctor can find nothing wrong.. so maybe all relates to my diaphragm? I did hike down the grand canyon and out with one lung….. did not know about my diaphragm issue at the time… so no telling what the future may hold…

  106. Dee Says:

    by the way i found Dr Kaufman on the internet. My lung doctor told me to live with it.. and said lots of people live with the problem.. he also told me I had copd , my family doctor thought I had allergies, etc

  107. Tom Maddalla Vero Beach, Florida Says:

    Sorry Brenda, I thought it was Steve’s question! One more thing i didn’t answer was being forgiving. An Attorney said you can’t sue unless he left a monkey wrench in there, or something like that. So ya can’t sue em but you can kill them with LOVE and give them a HUG and that tells them they need to go back to school or better there AIM. Ha Ha and I won’t let hate drag me down. I’m enjoying whats left of my New Life. PS: Do you know anyone who can make teeth grow back? Just a thought Ha Ha Tom

    • Brenda Jordan Says:

      Tom
      Thank you for all the information about your shoulder surgery, PPN surgery, etc. it’s great information.
      another question: was your phrenic nerve paralyzed immediately after shoulder surgery or did it come On Slowly? Mine was over a period of 6 months.
      No way do I hate my shoulder surgeon…. I just think they should reconsider doing a nerve block for any kind of surgery. I wouldn’t wish this on anyone.
      It is WONDERFUL that you are fully healed!! I am sincerely very happy for you.
      If you think of anything else that I need to know please share.
      Thanks PPN community. You are a comfort.

  108. terry selb Says:

    Dee, I can tell you from my own personal experience that the “bloating” you are referring to is almost certainly from the lung issue. I never had that problem until this lung issue emerged. Now, I get that awful bloated feeling everyday in the later afternoon and it tends to linger into the early evening hours then it sort of disappears..until the next day.

  109. Tom Maddalla Vero Beach, Florida Says:

    Terry: I had a same experience of bloating, and I’m not a doctor but I realized that when the lung collapses the stomach wants to go and fill that space as did mine.That would give you the feeling you described. Also I could not go into my pool above my chest as i could not breath. The pressure of the water was painful. Eventually this will subside , but it will take time. Exercise and swimming did help a lot but time is the healer. Just smile and get moving. Ha Ha Stay in touch. Tom

    • Brenda Jordan Says:

      Śteve Scrozier
      What is the name of the device that your pulmonologist rigged up for you to force air into your lungs? I would certainly pursue that with my pulmonologist.
      Thank you for responding!
      Brenda

      • scrozier Says:

        Brenda, since it’s rigged up, I don’t think it has a name. It’s just an Ambu Bag with a flexible connector and a mouthpiece attached. You put the mouthpiece in your mouth and squeeze the Ambu Bag (carefully) to inflate your lungs. Obviously, you should talk to your pulmonologist about it.

      • Brenda Jordan Says:

        Thanks so much Steve. I will certainly see my pulmonologist about this.
        I am so thankful for all the long hard hours/weeks/months/years you have put into this website!! I would not have any idea or understanding about my PPN if wasn’t for you and those who post here…..and I would feel much more alone. My family and friends are sympathetic but they truly do not understand what it feels like. You have to experience it to know. Folks on here certainly know…..
        Truly Appreciate all the information and experiences of people on here.
        Thank you.
        Brenda

  110. Tom Maddalla Vero Beach, Florida Says:

    Hay guys and gals : I was just thinking back to just after my shoulder surgery, Maybe a few days later, i remember getting the worst case of Hick-ups. Mostly in bed or in the recliner chair. We always believed that was when the frenetic nerve was starting to fail. Just a thought, Did anyone else remember anything like that.

    • Brenda Jordan Says:

      Tom
      Mine came on slowly over a 5-6 month period after my shoulder surgery. I started getting a cough and feeling short of breath on exertion……
      Did you feel short of breath right after getting the hiccups really bad?
      Brenda

      • catpowered Says:

        OK this is kind of crazy. Probably from the onset of the pain I was having in my neck and shoulder about the second or third day after the onset I had a huge I’m mean a huge hiccup very painful. I had taken a bite to eat and suddenly that happened. That was very odd but I kind of feel like that was the last time that my diaphragm on the right side actually had a big movement. Another thing that’s very odd I used to have a irregular heartbeat. Skip beats. Once the right Phrenic nerve paralysis took fact that is no longer happening. I’ll put it this way if it happens it is like less than 5% of the time in regards to frequency beforehand. Used to be something that would happen multiple times a day. The right Phrenic nerve has something to do with the sensory and feeling of the pericardium around the heart. Kind of interesting. .

  111. Molly Jesberger Says:

    Hi everyone! My name is Molly and I’m just a 54 year old wife/mother/grandmother from Ohio who wants her life back!! I found this blog about 3 months ago and have been following it closely since. I can’t tell you how it’s helped me! Thank you scrozier and all who have commented and given advice. It has given me hope, and we all know on here how important hope is in our situations. My situation is different in that my right hemi diaphragm paralysis/collapsed right lower lobe is due to my total hysterectomy done on June 1, 2015. They are certain that somehow, the surgery is when it happened because I had a normal pre op cxr one week before surgery and 1 week after surgery I had excruciating neck/shoulder pain and immediate shortness of breath. the pain subsided but the sob did not. A cxr showed my raised diaphragm and atelectasis. They think it may have been due to positioning and inflammation around my phrenic nerve. I am currently on a bi pap machine at night because my oxygen levels were dropping below 80 for several hours at night. This has affected every aspect of my life as I’m sure you can all relate. Long story short…this blog led me to Dr. Kaufman. I have had my phone consult with him and he says I am a candidate for the surgery but he wants me to wait the 6 months. My problem is, that all of my insurance co pays, deductibles and out of pocket expenses are paid for the year and I would really like to have the surgery before the new year. I also have read that the sooner the surgery, the better the results. He has agreed that I can have another
    sniff test in early November (that will be 5 months since the injury) and if there is no change, we will move forward. I guess my question (although I have many more!) is how long did it take to have the surgery once you begin the process? I know it can take time to preauthorize with insurance and there are so many other details to work out..Am I being unrealistic to think it could be arranged before the end of the year? I would greatly appreciate any and all advice!

    • scrozier Says:

      Molly, I have no idea what Dr K’s schedule is like, but as to other issues, I think getting in before the end of the year is realistic. Best of luck to you.

      • Molly Jesberger Says:

        Thank you Steve! Mind if I ask where you stayed while you were there and for how long? My husband and I were thinking it would be smart to stay in a rental apartment so we could eat in more. Trying to keep costs down as much as possible. I’ve been pricing and it’s comparable to hotels, but many of them only do monthly rentals in the winter.

  112. scrozier Says:

    Molly, as I recall, we were in the NJ area for about a week. Dr K’s office had recommended a hotel (Extended Stay Suites? Homewood Suites? I don’t remember). It was not great, but it was relatively convenient. I actually don’t remember staying there but a few days. I think we may have travelled to visit some friends and family in the area, once I felt like doing that. I’ll check with my wife when she gets home, as she is in charge of the memory in our relationship.

    • catpowered Says:

      We stayed at a Residence Inn in Tintan Falls. It was ok. Breakfast was free but not great food. Had a fridge so we shopped and stocked up. Stayed a week. 9-18-13 to 9-25-13. About 1200 bucks I think. Rented a Toyota Venza for 500 for the week. Flew from Indianapolis to Newark round trip 350 each times two. If you’d like to talk I would be glad to. I didn’t have a good result but some people have.

      • Molly Jesberger Says:

        Catpowered, thanks for the info! Seems like flights have come down some since you went. I’ve been pricing for December and have found them as low as $175 pp r/t from Cleveland to Newark! I’ve read literally every post on here so I saw that your experience wasn’t great..I’m so sorry you went through all of that. None of us wanted or expected to be dealing with this anomaly of a complication and for you to have to deal with all of that on top of it is just so unfair..I’m cautiously optimistic going into this surgery mostly because it’s only been 4 months since the injury and from what I’ve read, that is a good thing. My hysterectomy was the first surgery I’ve ever had and I ended up with a paralyzed diaphragm, so of course I’m nervous but I feel it’s my only option to feel better. I know I’ll have many more questions through this process and so appreciate everyone’s willingness to help.

    • Molly Jesberger Says:

      Thanks Steve. I understand all about that! I am in charge of memory at my house too!!

  113. Michelle Fall Says:

    I am so thankful for this site. Reading through the comments has helped me significantly. As much as it saddens me to say it, I’m glad to know that I am not alone in this nightmare. I went in on 9/30/15 for Thoracic Outlet Surgery on my left side. When I woke up in recovery the surgeon notified me that he accidentally cut my phrenic nerve because he was closing the scissors as he was going back in and unfortunately closed them on my nerve. I understand that there is a chance of damage like stretching since that area is so small, but I never thought the surgeon would cut it because he couldn’t control his scissors. I have been working with a pulmonologist and just got back my results from my PFT and according to the pulmonologist they are terrible. I have an appointment in the morning to find out what the next steps are to at least manage the day to day. I am also on oxygen at night because I was suffering from severe headaches after waking up in the morning. This has taken it’s toll on my life and my family. As a 34 year old and fairly active women I am trying to get my life back. After reading a ton of information online, I am led to believe that things should not be as bad as they are since I’m only dealing with unilateral paralysis and not bilateral. Depending on how my appointment goes tomorrow, I may be making a call to Dr. Kaufman. Thank you everyone for sharing your stories, it helps to know that we are not alone and that there is a light at the end of the tunnel.

    • scrozier Says:

      Michelle, I’m so sorry to hear your story. If there’s a tiny silver lining, at least you know exactly where the nerve was cut and exactly when. That may help your prognosis with Dr Kaufman. Many of us here have little idea when and how our injury happened. Best of luck to you.

      • catpowered Says:

        Steve is right on this Michelle. If you know where the injury has occurred get to Dr. Kaufman as quick as possible to get this fixed. The sooner the better and you will have to push.

      • Michelle Fall Says:

        I am thankful that my surgeon was very upfront about the mistake as well. I will make sure to reach out to Dr. Kaufman ASAP!

  114. Thomas Maddalla Says:

    OMG…………. Don’t wait another minute ! Mine was a needle stick during a nerve block Procedure for shoulder surgery and I did not know why I could not breathe for a year and a half. Doctors kept calling it C.O.P.D. until we found Dr. Kaufman on this blog. You have to realize that 99% of doctors have never herd of this procedure, as it is a New procedure of intervention for Nerve damage. They were not taut this in medical school,Your Diaphragm is now not being told to make your lung work.Please don’t wait another minute Call Dr. Kaufman…..Yesterday Good Luck

  115. Judy Says:

    Michelle I am so sorry this happened to you. My injury was also a surgical accident during thoracic spinal surgery. I am the one who figured out it was the phrenic nerve. I had many pulmonologists waste my time with testing trying to determine what was wrong. the surgeon never came to the hospital to see me after the surgery. He didn’t even acknowledge anything had occurred. I stopped breathing in the recovery room and was put on a ventilator and then to intensive care. the surgeon left a message on my phone saying everything went fine!! He wasn’t even able to finish the fusions do to my lung !!
    I really think you are in the perfect position to contact drKaufman and get this fixed. Good luck to you
    Judy

  116. Molly Jesberger Says:

    Michelle, I’m so sorry that this happened to you. I too have read many, many articles on this subject and until I found this blog all I ever read was that unilateral diaphragmatic paralysis rarely has symptoms that affect daily life and that no treatment is usually required or needed. I thought it was just me and I would have to live like this for the rest of my life. The wheels are in motion now and I have a surgery date with Dr. Kaufman on December 1st. We are in the process of working out insurance details right now but I am so thankful that SOMETHING is being done to hopefully get my life back. It’s my ‘light at the end of the tunnel’. Good luck to you..

    • Michelle Fall Says:

      I am so excited for you and wish you the best of luck in your recovery. I have a sniff test scheduled for tomorrow morning so after that, I will be reaching out to Dr. Kaufman’s office. I had a bipap machine installed last night so hopefully I will be able to get some sleep once I get used to it. I am so thankful for all of the helpful comments everyone has left, what an amazing community that has been created here.

  117. David Stuart Says:

    Hello all. I’m a 33 year old with a right paralyzed diaphragm. I’m also a new father and I’m terribly concerned about not being able to interact with my son (games, sports, etc) as he grows up. He just had his first birthday. It’s trying holding him and walking around carrying him. I’m very tired of the “learn to live with it” I’ve gotten from so many doctors. I’ve been in touch with Dr Kaufman’s office and hope that I’ll become a candidate. I still require an additional sniff test but I’m having a hard time getting any doc to order it. There’s no known source to my injury but I suspect it came from the chiropractor a few years back. Just thought I’d let you all know there’s another person out here with a hemi-paralyzed diaphragm.

    David Stuart
    Harrisonburg, Virginia

    • catpowered Says:

      Hi Sir. You’re not alone. I’m right side as well. Had the surgery on September 2013. If you get ahold of Dr Kaufmans office he will fax you an order for a sniff test. Yes it’s hard to love with it. I am three years since diagnosis. I’m now 46. I can not carry my two year old grand daughter 50 feet without handing her off or stopping. It’s tough. I hear you. Good luck my friend.

      • Judy Says:

        Hi I am in touch with DrKaufman’s office once again. the problem I am having is getting someone to do a diaphragm EMG here in southern ca. I did get a call back from Stanford in the bay area and they do them. So I have to get my referral there . There is one hospital in socal that does them, maybe, but they never answer their phone, I have left messages but no return call yet. Anyone else had that test done and if so where? Thanks
        Judy

      • scrozier Says:

        I flew to NJ to have the test and meet with Dr K at the same time. Worked out pretty well, plus the advantage that the neurologist (or whatever he is) knows what Dr K is looking for.

      • catpowered Says:

        Same here. Flew to New Jersey on a Wednesday had the test and had surgery on Friday.

        I’m surprised there’s not something very close to UCLA. Dr. K performs the surgery out there now also. You might call his office and talk to Gina or Heather.

      • Judy Sewell Says:

        Molly it has been very frustrating. I was on his schedule last Jan for surgery at UCLA and had to cancel it in Dec because I didn’t get the EMG and could not find anyone to do it. Then I had a lot of reconstructive spine surgery this summer . Still no improvement in lung capacity, before the surgery I spent 6 months hiking trying to build up something,but it didn’t do anything either. Good luck with your surgery Molly
        Judy

      • Molly Jesberger Says:

        My surgery is Tuesday, Dec 1st. We will be driving to NJ the day after Thanksgiving and I have 3 appointments on Monday. Dr. Kaufman, a physical therapy evaluation and then the neurologist for my EMG. The 2 appointments after Dr. Kaufman are at JFK Medical Center. I agree that you should talk to Gina or Heather to see if there is someone near UCLA that Dr. Kaufman works with.

      • David Stuart Says:

        I tried but I’m told he didn’t have a license to practice in Virginia do he can’t prescribe it for me.

      • catpowered Says:

        That is very odd. He has written all kinds of things for me in Indiana and when I checked his licensing before I had surgery he did not have any license in Indiana. He was good in New York, New Jersey, and California. I believe Ohio has been added since. I’m not telling you what to do but you just might double check that. The only thing he could not do for me once I got home was prescribed any narcotics. I had a horrible infection in my neck and foot after the surgery which almost took my life to be honest. I had a hell of a time getting anyone at home to help me because the surgery being as where is what it was no one wanted to touch me with a 10 foot pole. I finally got Dr. K to talk to doctors at Methodist Hospital in Indianapolis where I had been admitted and things finally got going from that point but it was a bout three weeks after the surgery. The infection set in on about day 12 to 14. Since the surgery in September 2013 he has prescribed to rehab stints at IU med center in Indianapolis and to sniff test at IU health in Bloomington. All in Indiana.

    • Molly Jesberger Says:

      Hi David. Yes, you are definitely not alone! I do daycare at my home and have a 2 year old granddaughter (and one on the way). Needless to say, I’ve had to cut way back on kids that I watch and limit to toddlers and up that don’t require as much lifting/carrying. One of my most frustrating moments was when my granddaughter was scared and upset and when I tried to carry her to where she felt safe, I could barely breathe. This has literally affected every aspect of my life and it is very frustrating to be told that ‘you have to live with it’. I’ve had to do all of my own research and thank God I found this blog! Luckily, my pulmonologist and primary doc have both been very receptive and helpful in ordering tests and faxing them to Dr. Kaufman. I had my 2nd sniff test yesterday and it showed no change so I will be having surgery with Dr. Kaufman on December 1st. I’m glad the waiting is over and I am very hopeful for even a partial recovery. I wish you luck and hope that he can help you too.

      • David Stuart Says:

        I’m still working. No doctor is prescribing me one. I may be able to get an ultrasound to verify. I’m going Dr k will accept this. I’m waiting to hear back. It’s unnecessary apparently since I’ve had a SNIFF verifying it already. They don’t want to give extra radiation and fluoroscopy is a heavy dose

      • catpowered Says:

        I am afraid that I glow. Four fluoroscopy’s, four x-rays, two CT scans.

  118. spearman3004 Says:

    I have a left hemi-diaphragm paralysis as of last April. My hunch is a Cervical sprain from 45 yrs ago has finally been impacted in top vertebrae. I have been undergoing tests for the last 3 mths having eliminated everything in terms of other diseases. Found this blog tonight, thank God. Could I please have Dr. Kaufman’s contact info?Thank you so much for doing this research for us.

    • catpowered Says:

      Hang in there it will get better. Go on the Internet to http://www.advanced reconstruction.com. Find all of his information there yet on the phone and make some calls and get it arranged to go out and have a chat with him.

  119. scrozier Says:

    spearman, glad you found us. I have a number for Dr Kaufman, but I think catpowered’s info will get you there. (Obviously, taked out the spaces in advancedreconstruction that mysteriously got stuck in there.)

    catpowered, I had not visited that web site for a long time, and was surprised to see that Dr K now does a diaphragm muscle replacement surgery. Very interesting.

  120. Rob Senatore Says:

    I just recently saw that diaphragm muscle replacement surgery listed on Dr K’s site. My pulmonary doctor and Dr. Brown the neurologist both think if the nerve is not working adequately then the diaphragm muscle still will not work sufficiently . In my case the nerve is not sending strong signals to my diaphragm. I am surviving as is and setting smaller goals on my physical fitness routines. Still not giving up. I am in 2nd -3rd year period since surgery.

    • scrozier Says:

      Rob, I had a nerve conduction test and it indicated that my nerve was working 100%…but I’m still not clinically improved very much. So the diaphragm surgery sounds interesting. Just not sure I’m up for what sounds like a major procedure….

      • Rob Senatore Says:

        Yes. I understand. I will not have the surgery because I see it as being too experimental. I have reinvented my body to fit my needs. I run/walk 4,5,6 miles at a time. I find that the adjustments I have made enable me to do normal things such as walking up flights of stairs or carrying groceries home , which were difficult tasks two years ago, are now doable with little discomfort. My cardiologist and my pulmonologist have suggested that I do everything I did before this illness- only to a lesser extreme. I am following that advice. I have taken on the goal of run/walking the 2016 Philadelphia Marathon. I have a year to train. I have run 6 marathons prior to my surgery, so I know what is necessary and what to expect. I am looking forward to this next year.

    • Juanita E James Says:

      http://healthyliving.azcentral.com/swayback-effects-4911.html
      Could this be happening that our bodies alignment is critical for our
      core muscles to hold our vital organs in place. Our nerves can only stretch the may the body was designed. Did our life styles in time do this. My son has bilateral paralysis, hes my only child. Fedelis Ins Co of NY
      refuses to send him to NJ to Dr.Kaufman hes machine dependent for breathing and has a trach now. hes been in the hospital Aug 27th and is still there.

      • Brenda Says:

        Juanita I am so very sorry about your son. I have an only child myself and can’t begin to imagine what you are going through. I wish there was something that could be done for your son. I will be praying for him and for you. God Bless And Keep you both in his care.
        I so wish there was a lot of research $$ being spent on this horrible health problem; to know the long term effects of what issues it causes to our body and other organs. Just to be able to talk to a doctor who knows what it is and that can actually carry on a conversation on the topic. There’s still so much unknown about it…. and If it weren’t for Steve Crozier we’d know little to nothing. I am very grateful that we can talk about what we are going through and share each other’s burdens.

  121. catpowered Says:

    OK I have something to run by all of you but I’m a little scared. I’ve known this for about five months but can’t seem to get any traction in regards to what the cause might be. I talked with my pulmonologist and also Dr. K and neither of them have ever heard of this in all of their years of experience and specialization. I was diagnosed with right diaphragm paralysis in September 2012 no known cause like many of us here. Went through The full gamut of testing….. In May of this year my brother who is about 22 months older than I am has been diagnosed with left side diaphragm paralysis. I have been assured that this isn’t something that hereditary to their knowledge. My concern is no one has ever went into the causes of this condition with great detail because it’s very rare. I have asked a few people but been very cautious about who I communicate with asking if they have heard of this as well and again the answer remains the same no one knows of anyone that even has a relative that has the same condition. It seems as this board has grown I want to trust everyone here. So my question to you is does anyone here have an idea or a relative or a brother that is fighting the same condition? I worry about my daughters, my son, my parents, my grandchild ….. If there something that can be worked toward preventing I want to know what it is we can do.

    • scrozier Says:

      Very interesting! No, no one in my family has it, to my knowledge. I was adopted as a child, so I don’t have access to all my relatives.

      Just curious: why are you scared to bring this up?

      • catpowered Says:

        Well because I don’t want to alarm people. I asked what the odds were of me and my brother both having the same condition and I don’t get an answer other then one in maybe a billion? It just seems extremely odd that no one else has on record of the doctors I’m dealing with which one happens to be the most renowned in the world at this point as to dealing with this condition knowing no one that has a relative with the same condition.

      • scrozier Says:

        I see, catpowered.

        This being such a rare condition, I’d say that a billion to one is being conservative. It’s very interesting. It is certainly tempting to suspect that there is something hereditary going on.

    • Molly Jesberger Says:

      I have a very large family (6 brothers and sisters) and no one else has had this that I am aware of. In fact, not one person that I have spoken to about my condition (except my pulmonologist who diagnosed me) has even ever heard of it! Crazy that your brother has it too..

  122. Judy Says:

    Thanks all for your info on your diaphraqgm EMG’s. I have been emailing Gina about this. I do hope I qualify for surgery. I am having a repeat sniff test tomorrow. Last years showed right side paralysis. Although the doctor mentioned the left side didn’t move to well either. It waws a very confusing report and seeing I could not find a doc to do the diaphragm EMG, I had to cancel the surgery for last Jan/\. Now his is coming to UCLA again in Feb. I hope I can get this test done in time. It is odd thatr no one near UCLA does it, I was told of one hospital in Irvine but so far I cannot get anyone to call me back and they do not answer the phone. I did find a few doctors in Stanford that do it so I did ask my pulmonologist to send my referral there. Everyone was telling me this one doc at Cedars
    Sinai did them. But he is who I waited to see last year he walked in the room and said I do not put needles in diaphragms. Someone finally asked him and he said he does not do it. So I may have a road trip to San Francisco.

    • Molly Jesberger Says:

      That must be so frustrating for you Judy. It will be 6 months for me at the time of my surgery and it can’t get here soon enough! I sure hope you can get the test so you can have the surgery in February.

      • Brenda Jordan Says:

        To those of you getting ready to have surgery, could you please post your updated post op information on this blog? I am very curious about what all you go through, how much pain you have after the surgery, recovery time, etc. I want to know as much as possible from the folks who really know–those of you on this blog who have had the surgery. It’s not like heart bypass surgery or knee replacement surgery, etc. This is a very rare and unusual condition so the stats for this type of surgery are not known. I am the type of person who wants to be educated as much as possible about any Recommended surgery.
        I wish those of you preparing for surgery the very best and I hope and pray the surgery is 100% successful and you can get back to living a normal life again. God Bless.
        Brenda Jordan

      • Molly Jesberger Says:

        Hi Brenda! I will certainly follow up on here after my surgery. I’m like you..I like to know as much as I can before going in. There hasn’t been much detailed discussion about the pre testing and surgery experience on here that I have seen. Mind you, it’s been a bit since I read all of the comments! I know catpowered had a rough post op complication but has still been very helpful in this blog offering advice. I, too would love to hear anyone who has had the surgery’s experience. I’m particularly curious about the EMG as I’ve read that there is a ‘needle into the diaphragm’ involved! And how big are the incisions for decompression (neck) and grafting (ankle). And again…I am so very thankful for this page! They say misery loves company but I truly wish everyone on here good health and happiness

      • Judy Says:

        I just had another sniff test today. the one I had last year is written so poorly no one could ever interpret it. One reason why last years surgery was cancelled. I had a great doctor today. He said he would have the doctor that did last years correct it. He found for sure that my right diaphragm is paralyzed, I am on my way

        Molly I had an EMG of my diaphragm in 2011. I didn’t find it painful or anything. My problem now has been finding a doctor to do that test here in Los Angeles. the doc that did it in 2011 is no longer working anywhere right now. Not sure if he is retiring.

      • Brenda Jordan Says:

        Molly thank you! I appreciate your willingness to share info after your surgery. I know you are curious about all the particulars too. I did have EMG nerve conduction study on my cervical area but the neurologist did test the phrenic nerve. I am not sure that he would have but that was not on the order. It wasn’t so painful until he got further up in my neck, but the good thing (like Steve stated) is that it doesn’t last but a few seconds and when they take the needle out the pain is gone. I hope you get more information on this blog about recovery time. Best wishes Molly! I hope you are an excellent candidate and you are completely healed. I will be praying for you.
        By the way I live in the Chattanooga area. I am curious about where fellow PPN bloggers are from. Maybe somewhere down the road we could try to meet in a central place. I have yet to actually meet someone with this health issue. To know there are people who totally understand what I am living with because no one could actually understand or imagine what this smokiemtns@yahoo.com is like unless you live it…
        I am so glad to have the information on this blog and to know that there is hope.
        Brenda

      • scrozier Says:

        I have to be honest: my EMG (if that’s the right name for the needle in the diaphragm) was painful. However, once they take the needle out, it’s over. No residual pain. I went through it twice, and lived to tell the tale. (Not sure I’d volunteer for another one, though….)

      • Molly Jesberger Says:

        Thanks Judy and scrozier. Judy, the first sniff test I had, I swear the radiologist had never done one before! I was worried that the results wouldn’t be accurate. My second one the radiologist was extremely arrogant but appeared to know what he was doing and the results were the same..no movement. Good luck finding someone to do your EMG! Scrozier, can I ask how long the needle is in? I’m sure it probably varies but I really want to know going in so I can prepare myself. Also, what about pain post op? I’m trying to gauge what my activity level will be when I get home with Christmas coming up!

      • scrozier Says:

        Molly, I don’t remember the needle particularly, but I assume it’s fairly long to reach the diaphragm. It’s not the needle poke that hurts…they could poke you repeatedly with the needle and you’d barely notice. It’s just an odd sensation when they get to the enervation site at the diaphragm.

        Post-op wasn’t too bad. I have a terrible memory, but I think they put me in a neck brace for a whiile. Maybe the whole week while I stayed in the area to see the doctor for follow-up. It’s more an annoyance than anything, I’d say. I think I took one pain-killer pill the whole time. Maybe plan on a few days of doing nothing, then another week of taking it easy, then you’re probably back to normal. Be sure to plan on staying in the area for a week (as I recall).

      • Judy Says:

        So far I seem to be the only one on here in the west . I would love to meet someone who has the same problem. I have had this since 2009 and never heard anyone with this problem.
        I do have another rare condition, I have panhypopituitarism. My pituitary gland stopped functioning around 2004. At least it was diagnosed then. I have to replace all pituitary hormones now. The list is long, one is a nightly injection, one is cortisol the stress hormone. If I don’t take that one several times a day I will die in a few days. But I actually met someone on line who has the same problem and found out he lives a half hour from me. My ex left me with my lung problem,the hormone problem and all my back surgeries, and his wife left him when his health went downhill. We are ablout the same age and are now dating, but it is so nice to havec someone with the same problems.

      • Molly Jesberger Says:

        Thanks Brenda! I’m in Northern Ohio between Toledo and Cleveland. It seems we are spread all over the country! So true about no one being able to understand how we feel. Even the doctors don’t really know what to tell us! It’s one of those illnesses that you don’t really look sick but you’re broken inside..My friends and family have been great but they just don’t get it. I’m just not myself anymore and that’s hard for them too…

  123. Brenda Jordan Says:

    I meant to say I DID NOT have the EMG nerve conduction study on my phrenic nerve. I left out the not! I have no clue why the email address came up in my message?
    Brenda

  124. Dee Says:

    I had the surgery in JUNE 2013 The emg was done up there in Edison NJ. Numerous shocks and one long needle but it was All worth it… my lung doctor in NC could NOT recommend anyone here to do a proper EMG. and we have two great hospitals, Duke and Baptist… finding someone to do a sniff test is not an issue,finding someone that can read a sniff test properly is next to impossible.

  125. Dee Says:

    oops 2014

  126. gmanhart Says:

    I was diagnosed with paralysis of my left diaphram due to phrenic nerve damage. I too have been told nothing can be done. I have always wanted to be in the best health and this has been depressing. Mr. Croizer you give me a glimmer of hope. Can you also send me an email with your surgeons contact information? I cannot thank you enough.

  127. gmanhart Says:

    I’ve had a paralyzed left diaphram caused by phrenic nerve damage for 3 years. I have learned to live with shortness of breath but I hate the uncomfortable feeling in my stomach. Has anyone else experienced the stomach issues and any solutions?

    • Dee Says:

      you will hear this from others… bloating is common also as your lung is not working or partially working, your stomach now tends to move into the area previously used by your lung…. sure there is a better medical term but that is part of the problem

      • scrozier Says:

        Early on in my diagnosis, my wife (who is a doctor) was concerned that my compromised lung would, at least partially, collapse–and therefore be susceptible to pneumonia. I discussed this with my pulmonologist, who gave me an Ambu-bag, fitted with a flexible connector and mouthpiece. I used it to force (carefully) air into my lungs, hopefully keeping the bad side expanded and free from pneumonia.

        Keeping in mind that I’m not a doctor, I wonder if it would be helpful for keeping your lung taking up that space near your stomach that your stomach may now be invading?

        Might check with your pulmonologist.

    • Judy Says:

      I do have stomach issues but never thought they could be related to this. I actually see my gastro doc on Monday and hopefully will remember to ask him about this.
      My other news is I finally got a call back from UC Irvine, which is only about an hour away from me they do the
      EMG of the diaphragm and are now scheduling the beginning of December. I called my pulmonologists office and had them send a referral there so hopefully by next week I will have an official date for that test. then I hopefully will get on Dr Kaufman’s schedule for Feb when he comes to southern California. It might just happen this time.

      • genemanhart Says:

        There have been others that have posted in this blog about stomach issues from the diaphragm paralysis. It makes sense. Your stomach has shifted up to fill the void left by the elevated left diaphragm. You might mention this to the gastrologist.

      • David Stuart Says:

        Hi Judy
        I’d be interested to know what your gastroenterologist said as mine didn’t pay me much mind when I saw him. Ironically the pulmonologist didn’t pay me much mind either and I have one of the best in the state (pulmo).

    • David Stuart Says:

      I definitely have abdominal issues

      • Dee Says:

        after the surgery , no discomfort but bloating continues…. can only hope that as lung comes back may take some territory back but not a lot of hope

      • Judy Says:

        I saw my gastro doc yesterday and he just said it may move to that area, but he didn’t think it was the cause of any of my problems. He just told me I will have my problems with GERD and abdominal pain for life

      • Dee Says:

        to give you hope..my pulmonologist told me that there was nothing I could do for a paralyzed diaphragm …that I had to live with it…. A LOT HE KNEW

      • Judy Says:

        I know any pulmonologist I went to told me the same thing, nothing to do about it. With the exception of one , who really pissed me off, he said can you vacuum? He thought it I could clean my house what more did I want. I was pretty mad at him , but it turned out to be a good thing, because I went home and researched diaphragm plication and that is when I found dRKaufman.

  128. Thomas Maddalla Says:

    I remember having the same feeling of bloating and discomfort. we searched hi and low and found that there was other options available. We looked into a plycation method to make an envelope of internal tissue to hold the stomach in place so it can’t migrate to the lung area. But it seemed to do little for the real reason of why the stomach was there in the first place. Another choice we had was to put a pacemaker into the upper chest area ,and wire it down to the diaphragm and send a shock signal to the diaphragm to inflate the lung. Not something that I would recommend unless there were no other options.However it maybe something that may help someone with no other options!!!! If someone does need more info on that option I would be happy to dig up that information for you. I’m not a doctor , However it was offered to me as a last resort.

  129. David Stuart Says:

    Did anyone have issues with extreme elevation of the diaphragm? Did it have any health effects?

    • scrozier Says:

      Mine was/is elevated, but not extremely.

      • David Stuart Says:

        My liver is raised in to my chest and is actually touching my heart. I’m really hoping I can get the necessary tests and see Dr Kaufman. Pulmonologist said it won’t kill me but it feels odd

      • Dee Says:

        never heard of the liver doing this with a paralyzed diaphragm but what the heck do I know.

      • David Stuart Says:

        Did anyone with elevation have it return back to its normal position? It was indeed my liver, I just came from the pulmonologist and he showed me the ct scan

    • Judy Says:

      David that is strange, I never heard of it or had it happen either. I am like scrozier mine is only slightly elevated at least by my last x-ray

      • catpowered Says:

        Mine is high severely right side. Liver up also. Liver is even with my nipple believe it or not. Been there three years….

      • Judy Says:

        Hi Everyone
        I am upset and confused. I had my sniff test last year and the doctor who did it and wrote the report made no sense. All doctors agree. I had one last week. I showed the doc the one from the previous year and he could not make sense of it either. So I had the test and he told me right there that my right side was paralyzed. Ok so today I pick up the report to send to Dr Kaufman. It now says as his impression: Bilaterally diminished diaphragmatic excursions right greater than left . No evidence of diaphragmatic paralysis. Last years wording was confusing, but his conclcusion was a paralyzed right hemidiaphragm. I am now thinking I won’t be able to qualify for surgery once again. My problem was from a spinal surgical accident in 2009. I was a trail runner the day before surgery and couldn’t make it to my bathroom in the hospital after without desaturating. I still cannot climb one flight of stairs without being our of breath. I am still waiting for my doctors office to send in the referral for the diaphragm EMG and I did find a local hospital to do it. I just now have no idea what it will show. I am just getting really depressed thinking I have to stay like this

      • David Stuart Says:

        Judy
        I wouldn’t get so upset yet. I’d see what the emg has to say. Send both reports to Dr K and let him make sense of it

      • Judy Says:

        Thanks David, I’ve already been crying. I don’t know why he would have told me right after he finished the test that my right side was paralyzed then write a different report. My test was done on 11/11 and it says he reviewed it on 11/18, could he have forgotten?

      • David Stuart Says:

        Call the Dr tomorrow and have him explain himself and let him know that this diagnosis is very important and must be right. Remind him that he said it was paralyzed and that it was paralyzed before. Maybe he messed up. You have the right to inquire.

      • Judy Says:

        I would love to talk to him, I am not sure if I will be able to, but I will try and if not successful I will ask the pulmonologist to speak with him. The same stuff that happened last year and I ended up having to cancel the surgery. Then the pulmonologists try to say It was a condition I already had. They don’t understand I used to run miles and miles up in the mountains. I know my breathing changed with the surgery when I ended up on a respirator

      • David Stuart Says:

        It’s so unfortunate you’re in this position. Just don’t give up hope. It’ll all get figured out in the end. You undoubtedly lost function after your respirator. You don’t go from mountain running to breathlessness ascending stairs.

      • catpowered Says:

        Judy I may have missed something but what was the reasoning behind wearing a respirator? How often, how long?

      • Judy Says:

        David and Catpowered
        I was put on life support basically after the thoracic spine surgery, I stopped breathing in the recovery room. The surgeon had damaged my phrenic nerve and who knows what else, It was in 2009. I was only on the respirator for about 2 or 3 days in intensive care. Then on the floor I was just on oxygen, but the physical therapist refused to take me out of my room because I would desaturate quickly. I was out of breath just walking from my bed to the bathroom. the spine surgeon never came to see me, he said nothing happened. But he had kept inflating and deflating my lung. By the end of all that I had lots of plural effusions. Then sent to a cardio thoracic surgeon. My right lung was pancaked together and required something called decortication. Everyone thought I would be fine after that surgery but my lung capacity stayed the same at 50%. Now it goes down to 40 at times.

      • catpowered Says:

        Wow. Irresponsible surgeons. I have had two. Both very cocky and never would acknowledge their wrong doing. There should be better protection for the patient.

        I now have the curvature of the spine to the left at the T-12 to L-3 area. This is where the ligament for the left working diaphragm attaches. I really started working in my leather with exercise and brisk walking last winter. It wasn’t long to where I could hardly walk. Leg nerve pain. Numbness. Hip issues. My last sniff test was done. I got a copy which initially showed the right side still paralyzed. My PT Dr in Indianapolis took a look and said to me, my goodness there is your pain issue. The spine goes left with every breath. When you except ode and breathe harder it pulls farther. Had an MRI done and I have three herniations in that same region now. My physical therapist who is a specialist in regards to diaphragmatic retrain told me this was a common problem with diaphragm paralysis patients that is overlooked many times. Issue with it is nothing can really be done because there’s no balance between the left and right with the left being the one the pulls.

        This plus the Gastro issues. Plus no air many days…. It’s the gift that keeps on giving but I am alive.

      • Judy Says:

        My spine has been a horrible mess and my first surgery was in 2007 on my cervical spine . I have had herniations and everything else you can have in a spine. A few years ago I became so hunched over I looked like I was 95 ,my mom looked much better than me. I had to walk with a cane and was headed to a wheelchair. I had been in one for a while after one surgery. All of the screws the surgeon had put in my lumbar area all came out and were pulling on nerves . I couldn’t put my right foot down at all and barely my left. I would crawl up the stairs to the shower every few days when I could no longer stand my smell. I have had 14 surgeries on my spine. But the last 3 this summer were to straighten me out. I read the x-ray reports last week , they said I still have a curve , scoliosis in my lumbar spine and many fractures too, I guess they are there for life. But now I can stand up straight and no longer need a cane. I was just praying I could regain some lung function. I had got it in the 60’s at one point then the beginning of 2014 it was only 42%. I have really exercised and have made no improvement. That is when DR Kaufman told me to contaqct them again , if I tried and made no improvement. But now with a sniff test saying they are both weak, I don’t have a clue what is going on

      • catpowered Says:

        Hate that Judy. I’m lucky. My PFT showed 62% lung function before surgery with Dr. K. Not sure what it is now but I am not better.

      • catpowered Says:

        Wow. Irresponsible surgeons. I have had two. Both very cocky and never would acknowledge their wrong doing. There should be better protection for the patient.

        I now have the curvature of the spine to the left at the T-12 to L-3 area. This is where the ligament for the left working diaphragm attaches. I really started working on my health with exercise and brisk walking last winter. It wasn’t long to where I could hardly walk. Leg nerve pain. Numbness. Hip issues. My last sniff test was done. I got a copy which initially showed the right side still paralyzed. My PT Dr in Indianapolis took a look and said to me, my goodness there is your pain issue. The spine goes left with every breath. When you excert and breathe harder it pulls farther. Had an MRI done and I have three herniations in that same region now. My physical therapist who is a specialist in regards to diaphragmatic retrain told me this was a common problem with diaphragm paralysis patients that is overlooked many times. Issue with it is nothing can really be done because there’s no balance between the left and right with the left being the one the pulls.

        This plus the Gastro issues. Plus no air many days…. It’s the gift that keeps on giving but I am alive.

      • Brenda Says:

        I am So sorry to hear of all of your health issues Judy. I hope and pray Dr Kaufman can help you. It’s terrible the damage that is sometimes done to patients by doctors. Your story is horrific. I can’t imagine that many surgeries on your spine! Praying for you. XXX
        Brenda

  130. David Stuart Says:

    Mr. S, can you email me a picture of your makeshift ambubag, I’d greatly appreciate it.
    Davidwstuart@verizon.net

  131. David Stuart Says:

    Thanks cat, I’m glad I’m not alone on this. Made me feel especially alienated. Mine would be about level with the nipple as well. Strange to think that my liver is right there.

  132. David Stuart Says:

    For those who had an elevated diaphragm and underwent the surgery, how long was out before your diaphragm lowered?

    • catpowered Says:

      Mine has been 26 months and it has not moved. I have talked to four others that had the surgery only one had success. He had the surgery about four months after diagnosis. He figured about six month from the onset as it took a bit to figure it out. His started working six months after surgery. Left side for him. Dr Kaufman states it’s usually about a year.

      • David Stuart Says:

        How long was it after your diagnosis that you had surgery?

      • catpowered Says:

        13 months. I waited too long.

      • Judy Says:

        Michael Langowski, Dr Kaufman has a new procedure that has appeared on his website some time in the last year. It is a muscle transfer. My last sniff test showed I have both left and right sides of my diaphragm weak, the right more than the left. It barely moves.It has taken me a while to find a place to do the EMG, I finally did, now just waiting for them to call and schedule it. My docs office took over a week just to send in the request. But seeing I was damaged during a thoracic spine surgery in 2009 , I know it is too late to work on the nerve, but I am hoping I will qualify for the muscle transplant. You might want to see about that.

      • catpowered Says:

        I just got word my friend’s father had a lung transplant and now has a right paralyzed diaphragm due to an issue with the surgery. It appears as though he will have to remain on oxygen and struggle with breathing even though he has went through the transplant.

      • Judy Says:

        Catpowered that is so sad about the man who had a lung transplant and now has the paralyzed diaphragm. to go through all that emotionally and physically and still end up with breathing problems is awful. I have a facebook friend from our hip replacement group who may be facing a lung transplant, I would hate to think of that happening to her

      • scrozier Says:

        Judy, without a functional phrenic nerve, how does the muscle transplant work? Do they have to use a pacemaker?

      • Juanita Says:

        I tried to post two days ago but it didn’t go through. How many ppl have discussed any simular symptoms that led up to this condition. What about any deficiencies that are common? What about living around where they spray pesticides? . What about posture similarities ? Did everyone fall or lift something . ? How many think of what did this to them and what is it ? Can everyone make a symptom list so we can compare. ? I need to figure this out . My only child has this and it’s bilateral. He’s been on the hospital -Aug 27- … I’m with him now at upstate medical ny. The doctors are sending him home on Friday because my son can’t handle being hospitalized any longer. The ins co, fidelis refuses to send him to jersey. This is a scary and dangerous thought , I love him so much.

      • Judy Says:

        I am sorry Juanita, it is hard enough to deal with when it is ourself but to have a child with this, it is terrible. I am so sorry. I know my only symptom I am sure of is my shortness of breathe. Mine happened in a thoracic spine surgery in 2009. I was fine and hiking 8 miles per day before the surgery also then swimming one mile after my hike. then something happened during the surgery. They did have to deflate one lung to do the procedure, but had lots of problems with it and kept inflating and deflating it. My oxygen saturation kept getting into the 30’s so the anesthesiologist stopped the surgery. the surgeon cleaned up and went home, never checking on me. I ended up not breathing in recovery , it took 2 hours to stabilize me ,I remember hearing doctors say she is stable, but not out of the woods yet. I was on a respirator in intensive care for a few days. Then I came off the respirator , but would desaturate with only a few steps.
        so I never did get physical therapy. I was out of breathe at that time just walking from my bed to the bathroom. Now it seems that my right side is really very weak or paralyzed, it depends on when you ask a doctor. But my left side is weak as well , which is scary to me.

        I hopeDr Kaufman can help your son and soon.

    • David Stuart Says:

      Cat
      I’ve seen some that were years after diagnosis gain some recovery, don’t give up hope. Maybe it wasn’t too late and it’s taking a longer length of time to recover….I hope for your sake

  133. Thomas Maddalla Says:

    My diaphragm problem took Two and a half years to diagnose. They called it everything they could think of but we persisted to look farther and we found Dr. Kaufman and he sent us to get a sniff test right away.Surgery was soon after and it took three years to to build back to normal tests. It is never going to be an overnight thing,Just something that has to be rebuilt. I hope that you all can have the success I had, It just takes time and work.

    • David Stuart Says:

      Mr Maddalla
      I of course am hoping to be a candidate. If your diaphragm was actually raised in your chest, do you have an approximate time it took for it to lower to a more normal level? I know it takes time to regain diaphragm control and strength because of atrophy but I’m curious on the relief of sandwiching in the chest. Is there an specific exercise you do that I could potentially work on? My Dr hasn’t been much help in that aspect.

      • Judy Says:

        I am hoping to be a candidate for DRKaufman’s muscle transplantation. But now that I have two weak diaphragms I am not sure if I will be. Maybe he can fix the weaker of the two.
        All I know is I was just out of breath walking to answer my front door . It is really getting bad. I took a mediation class where the instructor told us to just think about out breathing. At the end he asked for comments, I told him it was horrible for me, it just showed me how bad my breathing was. MY doctors secretary is taking her sweet time sending in my referrals for the EMG. I don’t know why , but I did find a local hospital that does them.

      • Dee Says:

        strongly suggest that you make sure they know what they are doing at your local hospital for an EMG my pulmonologist told me he knew of nobody in the southeast that he would trust to do an EMG properly. Finding someone to do a sniff test and read it properly is just as difficult..

      • Judy Says:

        I know Dee my last 2 sniff tests are so confusing. I did leave a message to have the radiologist call me back as he told me one thing at the time of the test, then his report written a week later says something else. He never called me back so I will call again Monday morning. As far as the EMG, I was told so many times that this one doc woiuld do it, but I insisted he would not. I went to him last year and he walked into the room saying I don’t put needles in diaphragms. So I asked Gina at DRKaufman’s where to go and she told me. so I am waiting for my doc to send in the referrals to Stanford and to UC Irvine. She told me they were both good. then I asked another doc to give me a referral for another sniff test at a different hospital. Those 2 tests are so hard to get, I almost just want to fly to NJ to have them done

      • Dee Says:

        we went to NJ to get emg done not pleasant but GLAD I did

      • Brenda Says:

        My sniff test was done in Chattanooga TN. It didn’t take 5 minutes. The radiologist told me immediately that I had a left paralyzed phrenic nerve. His report said the same. Judy you need to find another place to have your sniff test. Obviously they aren’t experienced in performing this test for you. Good luck!

      • David Stuart Says:

        How has your recovery been Dee? Making good progress? Do you remember any of the qualifying factors for the surgery? I have another test pending Monday morning then I’ll be submitting my papers via fax.

  134. Thomas Maddalla Says:

    Oh…. That dastardly E.M.G. Test That all the doctors are afraid to do Turned out to be Quite easy in my experience with Dr. Kaufman’s team. I was expecting the worst and they said OK You are done. I Hardly even noticed it. I must have been under a lucky star or something. lol

    • Molly Jesberger Says:

      I sure hope I’m under a lucky star a week from Monday when I have my EMG in NJ..I think I’m more nervous about that than the surgery!!

      • David Stuart Says:

        I’m betting you’ll be just fine Molly!

      • catpowered Says:

        I will say a prayer for you and your family…

      • Dee Says:

        the EMG was more painful for my wife watching than it was for me but glad I had it done in NJ …. only true way to find out if there is some diaphragm activity.. YOU WILL BE FINE…… PROMISE…

      • catpowered Says:

        Now to clarify I didn’t mean I’ll pray for you because it was a horrible test. It was not. I part for great results of the whole thing.

      • catpowered Says:

        Now to clarify I didn’t mean I’ll pray for you because the test was awful, it was not. I pray for you for the results of the test and surgery to be safe and a great success.

      • Molly Jesberger Says:

        Thank you all so much! I appreciate your prayers and words of encouragement more than you know! Coming from those who know exactly what I’m going through with this bizarre ‘condition’ that we all share means so much! It’s so frustrating to have something that no one around me has ever even heard of, let alone understands. The results that those of you have had with this surgery are so varied, I really don’t know what to expect for myself. I just keep telling myself that only being 6 months out from the injury that I have an advantage and hope for the best!

      • David Stuart Says:

        Molly,
        What’s the schedule look like for being there? Hotel prices? Flying or driving?

      • catpowered Says:

        When I went out there in September 2013 for my surgery we went to a restaurant somewhere in a marina in New Jersey. I can’t for the life of me remember the name of it, a hole in the wall kind of place. But anyways the best crab cakes I’ve ever had. Fantastic. If my credit card records were to go back that far I would dig it up because if I ever go back to New Jersey to that area we were staying I will definitely eat those crabcakes again.

      • Molly Jesberger Says:

        David, we were going to fly but decided to drive to save money. Flight costs for the holiday weekend were ridiculously expensive!! It’s about an 8 hour drive from our home in Ohio. We decided to stay in an apartment instead of a hotel so that we will have a kitchen so we don’t have to eat out every meal…again, to save money! The price is comparable to a hotel that has a kitchenette but much more homey. We are staying in Ocean Grove and the cost is $1000 for the week (7 nights). Mind you it would cost much more in season. We are going on the Friday after Thanksgiving. I have my EMG and visit with Dr. Kaufman on Monday and surgery on Tuesday. I will be staying at the hospital overnight and follow up with Dr. Kaufman on Friday. The plan is to come home after my appointment but it will depend on how I am feeling. I hope this answers all of your questions!

      • catpowered Says:

        Good luck to you Molly. All will go well.

      • Molly Jesberger Says:

        Cat…if you think of the name of that restaurant in the next couple days let me know! I love crab cakes!

      • catpowered Says:

        Barhs Landing Marina. Super Crab Cakes. I just googled it. Little pricey but I couldn’t eat both. You have to go and send me some to Indiana. Half an hour north from where you’re staying.

        Bahrs Landing Seafood Restaurant & Marina, 2 Bay Avenue, Highlands, NJ 07732

        Now a funny story so I hope not to offend anyone buy my wife after a few days had to get away from me. Cooped up in a hotel she decided to go to Asbury Park to a beach to hang out for a while. Drove there got situated on the beach to try and get some sun. Laid down and looked around a bit. Then she ran to the car and back to the hotel. I said why you back so soon. She said I looked around and I was the only “straight” person there. It was a gay beach, primarily males. Makes that were doing things they shouldn’t be, in public. Wowowowowowow. Back to good ole Indiana for us.

        To be completely honest if you’ve never been there it’s really not any different than the Midwest once you get a few miles of the ocean. But when you get around the ocean you can see about anything.

  135. Brenda Says:

    Molly
    I wish you the very best and hope you make it through the tests and surgery with flying colors!! I hope your surgery will be 100% successful and that you are completely back to normal. Keep us posted on how you are doing.
    It is a strange phenomenon, the illness that brings us all together here …with tons of help from Steve, of course. I am always interested in any bit of news or information from everyone here. It’s a comfort to share experiences about this horrible condition.
    Happy Thanksgiving PPN Support Group!!

  136. scrozier Says:

    Several of you have asked about the “devices” that my pulmonologist made for me, so I’ve posted them in a photo album. Please don’t try to rig something up on your own. There is a potential for harm if you don’t have the assistance and advice of a doctor.

    There are two “devices” and three photos at the link below.

    The first photo is the modified ambu-bag. I use it to blow air *into* my lungs, on the theory that it expands the lungs fully and potentially keeps the “bad” lung from collapsing.

    The second two photos are for rehab. It is an incentive spirometer, with optional resistance fittings. (I don’t really know what they’re called.) The fittings can be used and combined to make inhalation more difficult, like you would do progressive resistance in the gym.

    If your interest is piqued, show the photos to your pulmonologist or other specialist.

    https://www.flickr.com/gp/118852032@N04/7hf9M5

    (If you click on a photo, and click again, you will get an enlarged view.)

    • Judy Says:

      Molly best of luck to you. I will be thinking about you and praying and hoping for the best possible outcome. I tried to post this yesterday, but I was having computer problems and it didn’t go through.

      • Michael Langowski Says:

        I went to Dr Brown yesterday for a follow-up emg.I’m lucky I live very very close to both Drs My phrenic reconnecting surgery did not take 1year ago due to excessive bleeding so Dr Kaufman wanted me to redo the sniff test which showed a still very paralyzed right hemi diaphragm and emg test. I failed the emg test I fainted 2times ,I hate this test……… A word of advice to all about this test. First time is ez cause you don’t know what to expect. The second time you had better be well rested and hydrated with a full belly. I went not doing the latter and failed miserably. I wish this test was done with me being knocked out. I don’t see why you have to be awake there is no input other than discomfort for this test. I don’t think I will continue trying to have the good Dr try to reconnect. I think I will just capitulate to this condition and live with it just like all the Drs previous to Dr Kaufman told me. On Nov 23, 2015 9:34 PM, “Steve Crozier’s Blog” wrote: > > Judy commented: “Molly best of luck to you. I will be thinking about you and praying and hoping for the best possible outcome. I tried to post this yesterday, but I was having computer problems and it didn’t go through.” >

    • David Stuart Says:

      Thank you Mr Scrozier. I inquired about an ambubag with my pulmo. He didn’t “rig” anything up for me but the thought is understood.

  137. David Stuart Says:

    Michael
    Sorry for the bad experience. Did you inquire about maybe taking an anxiety medication before the test? I don’t actually know what happens during the test but I would imagine it’s not too pleasant. Is completing this test preventing you from a redo? I hope you can find a solution for your problem. We all want to breathe better, I know I want to and I want everyone on here breathing better. How did your surgery “not take” the first go?

  138. Michael Langowski Says:

    David, Dr Kaufman didn’t get the chance to graft the nerve. The location where my phrenic nerve is, is damaged it’s a mess of veins and arteries.This is most likely from me carrying heavy items on my right shoulder during my working years.
    Dr Kaufman could not graft due to the severe bleeding.
    He was very unnerved after the surgery, he pretty much went into lifesaving mode for me said I lost better than 800cc on the floor.I did get 2 bags of blood.
    I believe he wanted to retest to see if maybe he could have released the phrenic nerve.
    I did have an office visit with him this past summer. He wasn’t interested in going back in then.

    • Judy Sewell Says:

      I’m sorry that happened to you Michael. I thought I sent a message to you asking if you or DrKaufman considered the muscle transplant on your diaphragm. I don’t see it now, I am probably repeating myself, but my computer is so slow and behaving poorly

    • David Stuart Says:

      Very sorry it went that way. I hope at the very least you’re relatively asymptomatic.

  139. Judy Sewell Says:

    scrozier, I have no idea how this muscle transfer works, it also says on his site that it is used for people who have had their damage for a long time. I just sent my sniff test and new pulmonary function tests to Gina tonight , so maybe I will get to have an apt with DrKaufman now, I sure hope so and I will post whatever I learn. My first EMG in 2011 actually the only one I had said I had partial damage to the right phrenic nerve> I finally got a date for my EMG but it isn’t until Jan6th. Dr Kaufman is coming to Ca in Feb. I hope I qualify . With both sides being weak, I have no idea what this will show. My docs office wasted time sending in the info , when I told them to , the hospital was booking for Dec 8th. But they waited a few weeks with me bugging them to send it in.
    If my left side is now weak it would explain my lung capacity going from 65% down to 42% in 2013. I just don’t know why the left side got weak

  140. David Stuart Says:

    Let us know how things go tomorrow Molly! I’m sure things will breeze by.

  141. David Stuart Says:

    Well finally got my consult with Dr Kaufman. He said he is willing to see me and I’m going to Jersey to get my emg with anticipation of surgery if the results are within the qualifications. I’m now waiting for Heather to call now. He said it’d be after the new year…darn because I’ve met my out of pocket for the year but I’m thankful he’s even been willing to see me.

    • Dee Says:

      Great news… but the bad news is insurance companies and doctors dont care about your timetable…. what a shame

      • David Stuart Says:

        So very true. Maybe I’ll be fortunate and get a December opening….someone would have to cancel.

    • Judy Sewell Says:

      David, ,i am glad you got this far. I had another sniff test yesterday and the doc wanted to know why I was having it. I told him about Dr Kaufman and my hopes for improvement. He did the test, then moved the screen so I could see. My right side did not move at all. I could see my left side moving, but absolutely nothing . I should get the results soon and send them in. Hopefully then I will get to speak to DR Kaufman.
      I too have met all my out of pocket expenses for the year. the last 3 months have been on Blue Shield, I love it.

      • David Stuart Says:

        I’m happy you finally got a viable sniff test. It’s strange for me to see my right side not working but my left side being active. It’d be a dream come true for Anthem to foot the bill on this, at least most of it. Either way, I’m still thankful. I pray you and I are both candidates and get great recovery. I’d love to be able to activate more of my life again. It’s been a few years since diagnosis (6) and that of course is bad. Dr Kaufman said that I have my age going for me but there’s never a guarantee which I already understand. Just want to exhaust all opportunities before plication is on the table.

      • Judy Says:

        Thank you David for your prayers. I know I will be next year if I qualify. I don’t remember when I posted about this last. But I was on DrKaufman’s surgery schedule last Jan when he was com9ng to Los Angeles. I really went into depression when I had to remove myself from the list. I will be praying for you as well . My damage was done at the end of 2009 so it has probably been too long to try to do anything with my phrenic nerve although he did put me on his schedule last year so who knows. I am hoping for the muscle transplantation. I really want to hear more about that too..
        Keep us updated , especially when you get the date you are going out there. I would so love to be able to hike more than a few very slow miles again.

      • Dee Says:

        it is my understanding that the purpose of the emg is to see if there is any activity at all of the diaphragm …. if any activity detected at all there is hope….

      • Judy Says:

        Hi Dee,
        At this point, I don’t even remember the purpose of the emg. I know the sniff test determines if the diaphragm moves at all. I think Dr Kaufman needs one side to be paralyzed. Isn’t the emg a muscle test? Ok as I am writing this, I realize I really have no idea the purpose of the EMG if the sniff test already shows the diaphragm is paralyzed

      • Dee Says:

        the emg checks for nerve damage we think … and they want to see some activiity… they also will find out more information.. such as I have carpal tunnel and neuropathy in both elbows…

      • Judy Says:

        Dee I have had about 4 EMG’s on lower extremities. I know the part where they put some type of pad or something small on you in certain spots and then zap you checks for nerve function. then there is the other part where they stick needles in your muscles, it checks for muscle activity. to get my leg and foot function , they did the tests only on my legs. Did you also have them check your arms for carpal tunnel? I have foot drop on my right foot , it was from one or two of my lumbar spinal nerves being inflamed. They checked my legs and my ankles.

      • Dee Says:

        but they shocked me all over…. thats how they found carpal tunnel The only time they stuck a long needle in me was from the side to check my diaphragm- pherentic nerve….

      • Judy Says:

        Wow , I guess it all depends on the doctor doing the test. I had a diaphragm EMG in 2010, but I don’t remember much about it. The only thing I do remember is the doc telling me he does them on any patient at the hospital that has breathing problems. I told him he had missed me and I had stopped breathing. Then I realized the surgeon would have been the one to order it and mine never came back to see me in the 2 weeks I was there. Unfortunately that doc was out until Jan. and they are not sure if he will come back to the hospital at that time.

      • David Stuart Says:

        Judy, I’ve been diagnosed since the end of 2009 as well. Dr K did mention the muscle transplant as well in regards to me potentially having a lot of atrophy of the diaphragm. He also said that he’s had people longer than me that did have good recovery without needing the muscle transplant.

      • Judy Says:

        David that is good news, thank you for letting me know that even though it has been a while there is still hope Now I just hope I don’t have to decide between the two. Of course I haven’t even got an apt with him yet , I am jumping ahead. I just am getting so hopeful and don’t want to be so upset and disappointed like I was last year

  142. Nita Says:

    my son has bilateral paralysis. Hes on life support. i think it came on over years,stemming from injury 1st , then i was noticing an onset of posture imbalance, swayback with pelvic tilt. when he gets his system down from just being released from
    the hospital, we plan on building up his core muscles. im wondering of care weakness isnt playing a part to this horrible illness

  143. Katherine Bean Says:

    My husband had surgery with Dr. Kaufman on October 9, 2015 after much difficulty in diagnosing the phrenic nerve injury and being treated for copd. He has a right paralyzed diaphragm. Mayo only offered plication as a solution, but we researched and found Dr. Kaufman through the internet. Mayo doctors said it was worth investigating and we can always fall back on plication.

    He had nerve grafting using a leg nerve.

    We are thankful for this hope and the good news is that he is improving and less out of breath than before and it is only 2 months after surgery.

    We are looking for a diaphragm retraining physical therapist in pensacola, fl or mobile p, alabama area. Let us know of any recommendations.

    We are so thankful to Dr. Kaufman and his staff.

  144. iandharris Says:

    Thanks for an interesting and helpful article. I’ve had a very similar case this year except that its my right diaphragm, with lower- and mid-lung lobes collapsed presently and 55% overall lung function. Also I’ve had varying diagnoses along the way and finally cannot find one for an odd symptom, except for “it’s not possible considering your condition”; this is that standing in a swimming pool or the sea at 1.4m depth, it’s hard to breathe, and I get light-headed gradually. Going deeper to shoulder-depth, or swimming, I cannot breathe in at all.

    All this took place in 3 hours on April, in Bangkok going to bed normal, and waking also with intense shoulder and neck pain, and very hard to breathe laying flat (as it still is).

    The string of hospitals and Dr’s since them there, in Manila and back home in Hong Kong, have been diligent and helpful but finally also, ‘nothing can be done”, as well as my deep-water inability to breathe any more being impossible.

    I will try your research method, THANK YOU.

    • Steve Crozier Says:

      iandharris, finding it difficult to breathe in the water is pretty common among those of us with diaphragm issues. It’s certainly true for me.

      Your intense shoulder and neck pain is exactly what I experienced as well. The common thread for us here in these comments is phrenic nerve damage, and it sounds like it would be worth taking that possibility to your doctors.

      • catpowered Says:

        Basically the same with mine started as well. Intense neck and shoulder pain right side waking up at 5:30 AM. Intense pain lasted for about 5 to 6 days. Narcotics would not touch it. I was shuttled around for three weeks to different doctors trying to diagnose me. It was a follow up for a sleep apnea appointment finally drove it to the paralyzed diaphragm. It has been one heck of a ride ever since.

    • Brenda Jordan Says:

      Definitely my symptoms too! I had extreme neck and shoulder pain before the onset of the shortness of breath. I have a paralyzed left phrenic nerve. Going into water above my waist makes it difficult for me to breath also. Many of us have the same symptoms but sadly few doctors know anything about PPN. Dr Kaufman in New Jersey is the only Dr working with patients dealing with this horrible condition. I hope you get some answers to what exactly you are dealing with.
      Brenda

  145. J.P. Says:

    Active Duty Military-51 y/o Male–CABGx3 Sept. 4, 2014(civilian Hosp), all was well post-surgery

    I completed Cardiac Rehab (military) January 2015. Went to chiropractor (military) Feb 2014 and notice I was getting out of breath when going upstairs to change after work. March 2015-Ruled out another cardiac event and diagnosed radiographically with elevated left hemi-diaphragm via ER visit(civilian).
    April 2014-Walter Reed for sniff test, Lung Function test- Sniff test chowed left diaphragm was lowering 3 cm when inhaling, right diaphragm seemed fine. CT (Cardiothoracic) surgeon stated most probable cause was Chiro, as all post CABG X-Rays of chest were normal, thereby ruling out damage during the CABG surgery. He suggested as it was not cut AND the diaphragm did go down (albeit only 3 cm), that it was not severed and probably stretched/damaged from Chiro. He said 1mm/day for regrowth or 1 inch per month- 12-18 month wait to see whether the nerve will heal without intervention. My Lung Volume test is abt 67% of normal expected my age group. I get out of breath bending over to put on shoes.
    Have attempted; unsuccessfully; to obtain EMG on phrenic nerve through military channels. WRAMC says they cannot perform and does not know of anyone in DC area who would be able to perform EMG to see actual condition of nerve. I am getting a second SNIFF test soon and will report results.
    Questions-
    1. Is there a different test which will show nerve conductivity for phrenic nerve, if not is there a Neurology Society type group which could direct me to have an EMG of phrenic nerve?
    2. Those that Dr. K has operated on for stretch phrenic nerve, how long before normal lung function returns?
    3. Has anyone here had, or known someone who had a stretch/damaged (Not severed) phrenic nerve which healed on its’ own without surgical intervention? If so any time frame.
    Thank You for your time.
    J.P.

    • catpowered Says:

      Can you elaborate on why you mean by stretched? At the chiro did they use a “Y” strap to elevate you head and releave compressed nerves? I’m really curious.

      • catpowered Says:

        And anyone heard from Molly????

      • Judy Sewell Says:

        No I was wondering how Molly was doing too, I hope she gets on here soon

      • J.P. Says:

        Cat, The Chiro manipulated my neck with her hands. The non-medical term is “Cracked” my neck. The CT surgeon stated that is what likely caused the nerve to be stretched. The SNIFF test showed both diaphragms going down. The surgeon said if it were severed (not working at all) when one diaphragm went down, the other would go up-paradoxical diaphragm function.

      • catpowered Says:

        So my assumption would be during normal breathing both diaphragms seem to be working, one that will be it not as well as the other. But when doing the sniff test you end up with the paradoxical movement. That would indicate a very weak a diaphragm. I’m not sure where you’re located at within the states but Mary Massery who is located in the Chicago area does diaphragmatic retrain. Also Ellie Lopes of Indianapolis at the narrow rehab center of IU health does it as well. Both of these gals are great. Problem with Mary is she can be up to 6 to 8 months to get in to. Something you might be able to do if Mary would allow it is if you talk to her office she might give you one of her disciples that has been through her training program that would be closer to you to go see? You can Google Mary Massery.

    • Judy Sewell Says:

      Hi J.P.
      Thank you for your service and keeping us safe here in the US. My phrenic nerve showed damage in 2009 after a thoracic spine surgery. After that surgery I would be so out of breath going up a flight of stairs. I was a mountain trail runner before the damage was done. I was on DrKaufman’s schedule here in Los Angeles last Jan,. but I could not find anyone to do the EMG of my diaphragm. I did have one in 2010, but I was not put on that doctors schedule and when the doc that was supposed to do it walked in, he said he did not put needles in diaphragms. So I had to cancel the surgery. I am back this year. I just had a sniff test and the doc showed me the screen and had me take deep breaths to show my right side did not move at all., I am just waiting for the report. My lung capacity in the last few years has been between 40 and 50%. I had to ask Dr Kaufman’s office where I could have the EMG done out west. I am now on a schedule to have one January 6th. when my phrenic nerve was tested last year, it looked normal, but unfortunately my diaphragm seems to be paralyzed. It may have recovered , but I haven’t watched it yearly so don’t know the time frame.
      Most doctors will do the nerve test of the phrenic nerve, just not the muscle part of the diaphragm. the doc last year did test my phrenic nerve, just would not do the diaphragm part which involves needles. the nerve test just involves an electrode on your neck where the nerve is. When I was looking for someone to test the diaphragm it seemed everyone here wen to NJ .
      Best of luck

    • Dee Says:

      I took the EMG in NJ also. and the surgery two days later. My pulmonologist in NC told me he knew of nobody in the south that he would trust to do a proper EMG I had the surgery in June of 14…recovery is very slow and there is no guarantee that the lung- diaphragm will recover at all. I can get a sniff test done here but to get another EMG to get more information I would hv no choice but to go back to NJ .In the spring of this year my pulmonologist did a breathing test in his office and it showed some improvement…

  146. Molly Jesberger Says:

    Hi everyone! Sorry I’ve been quiet..It’s been a whirlwind couple of weeks and since I got home, I’ve been concentrating on resting and getting my head around it all! Thank you for all of your well wishes and prayers! I’m doing well and I have quite a story to tell you, but unfortunately I don’t have time at the moment. I promise I will post my timeline of events later as I know how each one of our stories adds to the puzzle of this unfortunate condition that we all share. I am ever thankful that we have this blog to bounce everything off of each other. Thanks again Steve!!! I’ll post again this afternoon..

  147. Judy Says:

    Molly I cant wait to hear your story. It is good to see you posting .

  148. Molly Jesberger Says:

    Hi everyone! First of all, I’m glad we got to New Jersey a couple days before I had to dive into business..We stayed in Ocean Grove just across a walking bridge to Asbury Park and it really was the best of both worlds! Ocean Grove is just beautiful with so much history and beautiful victorian homes and Asbury park also has a lot of history and is full of great bars and restaurants with any kind of food you can imagine and they are joined by a great new boardwalk. I had my first appointment with Dr. Kaufman on Monday morning followed by my appointment with PT/OT Jen to discuss diaphragm retraining and finally my appointment with Dr. Brown for my EMG/diaphragm eval. I tolerated the EMG well..not pleasant by any means, but tolerable. The results, however showed little to no activity in my diaphragm. When Dr. Kaufman called me later with the results he was not optimistic at all, even questioning whether or not we should proceed with surgery the next day but he decided it was worth the risk but made it clear to me that my odds were not what he had thought previous to the EMG. Surgery the next day was without incident. No complications, however, there were a few unexpected happenings. Dr. Kaufman was very surprised when he opened me up to find that my right lung was literally IN my shoulder! He said that he has never seen a lung that high in someone’s chest before! He also said my anatomy was different in that my phrenic nerve was all twisted and turning into places it shouldn’t be. He thinks that is why Dr. Brown couldn’t get a good reading on my diaphragm because none of the nerve impulses were reaching to the spots where they normally would. When he tested my diaphragm during surgery he got a response..very weak, but a response none the less, which is very good news! He also said ‘there was a lot going on in my shoulder’. I have a cervical rib (an extra rib) and there was a lot of inflammation along with the lung being very high and he had to do a lot of ‘cleaning out’ to make room for the nerve graft that he took from the back of my right leg. The first time I got out of bed, I had pretty extreme nerve pain in my right heel that made it very difficult to walk for the first 4 days, but it’s much better now. Just some numbness that is no problem at all. Dr. Kaufman is very optimistic about the results and thinks after my initial 4 weeks of rest that with PT I will be on ‘the fast track to recovery’ and thinks I could see results as soon as 6 months! I already notice some small things like it is easier to blow my nose and I feel like I can take deeper breaths. We were in New Jersey for a total of 7 nights and took our time getting home, driving about 4 1/2 hours a day stopping at a hotel 1/2 way, which I’m glad we did. Fire away with any questions you may have. I’ll be glad to answer…tomorrow! Good night all! God Bless and thank you again for all your prayers and well wishes. I feel truly blessed..

    • catpowered Says:

      I am so glad to hear things went well Molly. You’ll be feeling better every day it sounds like. A couple questions I have are the lack of diaphragm activity with testing. Dr Brown did my test and the nerve and the diaphragm were a zero in regards to working. Dr K never questioned doing the surgery though. He may be thinking differently with his methodology nowadays. Second is where exactly were you opened up for him to view your lung? Did he place electrodes for the pacemaker on the diaphragm? He has suggested that to me earlier this year and I declined but have thought about further inquiry. Sounds like you were quite the case. Hopefully in time there will be an easier fix for all of us. I’m actually worse off after the surgery than before. Not the normal expected results. I have many other issues than have surfaced since I wish I’d been warned would come. At least maybe I’d try to have been better prepared. Every case is different though. Anyways glad to hear yours went well and you have a good plan. Stick with it. My rehab wasn’t suggested until six months after and who they wanted me to see had a six month wait list so it was a year after before rehab started. I had a bad ending to my surgery and hate to say it but honestly they really wanted to forget about me is the impression I felt. It is the risk of having a experimental surgery done half way across the country.

      • Molly Jesberger Says:

        Hi Cat! Maybe Dr. K ‘questioning’ whether to do the surgery wasn’t the right way to put it..I guess it was more that he wasn’t as optimistic of the outcome as he originally was. But he felt that the odds were worth moving forward, and I’m so glad for that! He did mention in that phone call that if things didn’t progress well after the surgery that the pacemaker might be an option down the road but he did not place electrodes. I think with the activity he found in my diaphragm during surgery, he didn’t feel it was warrented. My incision is just above my collarbone. It’s about 5 inches long and is horizontal. And yes…that is where my lung was (still is I assume)!! He explained that it may have been high to begin with, but with my diaphragm being stuck in the up position, everything just moved up. He said ‘there was a lot going on in there’ (my shoulder) with my lung, inflammation and my cervical rib (not sure if I’ve mentioned that before!), my phrenic nerve was very distorted and crowded. He did a lot of ‘cleaning up’.I’m so sorry that yours was a bad experience. Are your issues from the surgery or from the lack of success of the surgery? Like back problems and gastro issues? They really stress the importance of rehab now. I guess they are learning with each new case, and from what I can see, each case is very different!

      • Judy Says:

        Hi Molly What a surprise it must have been to you to learn of the quirks of your anatomy. I am so glad you have already seen signs of improvement. Thank you for your great description of the town and everything. I was wondering about the lack of diaphragm movement on your EMG too. My first one in Nov, the doc told me my right side was paralyzed. then he wrote the report a week later and said both sides were weak but no signs of paralysis. I didn’t think I would qualify with that. Sorry that was the sniff test. I had it repeated, the doc showed me the screen after he had seen all he needed and my right side did not budge. I just got his report which did state the right side is paralyzed. I thought it had to be to qualify for the surgery.
        I am hoping to get the phone apt with Dr Kaufman soon I am hoping I get on his schedule for surgery here in Los Angeles when he comes in Feb. This doc also said that my left side is weak which is really scary. I know the right side was damaged in spine surgery in 2009, but have no idea what is up with the left.
        YOu just keep resting and improving and telling us all about your wonderful progress.

  149. Judy Says:

    Catpowered I am so sorry you are doing worse than you were before the surgery. Is his new program to transplant muscle onto the diaphragm anything that could possibly help you?

  150. catpowered Says:

    I have sent a message in but yet to get a reply. I am interested but cautiously….

    Everybody doing ok?

    • Judy Says:

      I have my diaphragm EMG finally on Wed. Then a phone apt with Dr Kaufman on Jan13. I will definitely be asking about the muscle transplant as my damage occurred in 2009. I hope you hear back soon. My right side was the one damaged during thoracic spine surgery. What is now really concerning me is my right side is paralyzed, but they are now saying , through sniff studies, that the left side is weak. I have no idea why.

  151. iandharris Says:

    Dear fellow travellers along this path of managing a paralyzed hemi-diaphragm, wishing you all a Happy and I hope, improved-health New Year, and thankyou for this very helpful blog.

    I’m a British 56-year old, living in Hong Kong, and have a similar experience to many of you, having woken in the night with severe neck/shoulder pain and struggling to breathe whilst laying. This was in April 2015 in Bangkok whilst there to work for a week. It took until September, having undergone MRI and many other tests in hospitals in Bangkok, Manila and finally home in Hong Kong, to at last be diagnosed with my paralyzed right hemi-diaphragm, the lung-function testing revealing a 55% remaining breathing capacity, and collapsed right-lung mid- and lower- lung lobes. Despite very many investigations and tests for infections etc, the hospital couldn’t trace the cause.

    Day to day, life is pretty normal apart from it being difficult to breathe laying flat or on my left side, and also if jogging (can’t breathe upon each step-impact), or carrying heavyish shopping.

    One puzzling thing, which my pulmonary surgeon says is not possible, is that it’s difficult to breathe in the sea/swimming pool immersed to about the top of the stomach, and once at shoulder-depth or actually swimming, I cannot breathe-in at all; my stomach just pulling in but zero air-intake. I discovered it in the sea when preparing to snorkel, and have repeated several times in the pool, with no change.

    Have any of you experienced this too?

    • genemanhart Says:

      iandharris, I’ve dealt with a paralyzed left hemi-diaphragm for about 3 years. It’s interesting but I have some trouble laying on my right side. It makes sense since you are paralyzed right and have trouble laying on left side. I also have difficulty breathing in water. This is a condition I have heard is normal for a paralyzed diaphragm.

      At the onset, I had severe pain in my neck and shoulder followed by difficulty breathing on my back and right side. I was initially diagnosed with bi-lateral paralysis of my diaphragm. Both sides were not moving. The good news is, and hopefully you might experience the same, my right side fully recovered in 15 months. Good luck to you and wanted to give you hope that a natural recovery is possible.

    • catpowered Says:

      Welcome my friend. Glad to know you wish it was under a different circumstance. Yes I think many of us have the exact same condition when it comes to being submerged in water. We have a swimming pool in once I get mid stomach to mid chest the water pressure is great in it becomes very hard to breathe. I cannot dive it all in my Dr. Local he told me not to snorkel or dive because it could be serious in regards to consequence of my health.

      • iandharris Says:

        I see..so it’s very similar for you too. Hard watching my kids swimming in the sea but can’t go out with them anymore except playing around waist deep!

    • Steve Crozier Says:

      I think the issue of trouble breathing in water is pretty common for us here. If your pulmonologist says this is not possible, get a new pulmonologist. Seems like pretty basic physics. Water pressure makes is harder for your diaphragm to expand your lungs.

      • iandharris Says:

        Dear Steve, thankyou for feeding back; I’d really felt so alone with this condition, and then so surprised and relieved when a friend found your site and showed me.

        It does seem as though many medical people, although passionate and so hard-working and skilled, have not encountered many Phrenic nerve cases. My particular Dr. wanted me to use a CPAP breathing apparatus at night in the hope that it would help aerate my collapsed lung lobes. But I found that whilst it was easy and nice inhaling with it, it was difficult to breathe out, until I got light-headed and had to remove it.

  152. Judy Says:

    I had my diaphragm EMG in southern California last week and my apt with DrKaufman yesterday the great news is he said he can help me. He is coming to UCLA mid Feb, he just needed to confirm with a cardio thoracic surgeon about the days of surgery. I hope this other doc is available. It will be much easier to do this near home. But I am so excited, I would certainly fly to New Jersey if that was the only way. I am just waiting to hear from Heather again. So excited and so happy for this blog.

  153. Judy Says:

    I had a second phone apt with DrKaufman this morning. Seeing my surgery is going to be through my chest, both his cardio thoracic surgeon in NJ and Los Angeles are a bit concerned . After the damage was done to my phrenic nerve during thoracic spine surgery I kept getting plural effusions. I was sent to a cardio thoracic surgeon who then did a procedure called a decortication on my right lung. It was trapped . Now they think because of that, I may have too much scar tissue built up to do free up the nerve. So DRKaufman gave me a few alternatives. One is putting in a diaphragm pacer. Has anyone had this done? I am going to have a chest ct to see if they can get a better idea of scar tissue. If I go to NJ they can put in a camera and see if they think it can be done through my chest and continue and if not they will be prepared to do the pacer. I decided I would fly to NJ instead of having it done here . The cardio thoracic surgeon there is one he has worked with and is comfortable with , also the one who is willing to try the procedure. Also the diaphragm pacer cannot be put in in Ca. So now I am looking at mid march . I wait to hear from Heather on a firm date

    • Steve Crozier Says:

      I’ve had no experience with the pacer. Sounds like you’ve got all the facts lined up. Best of luck to you.

    • David Stuart Says:

      I was in touch with Heather today and it appears as tho I’ll be in Jersey mid March as well, God willing.

      • Judy Says:

        David, do you have a date Yet? I do not . I hope I get one soon. It would be good if we could meet. I may have to stay around for 2 weeks if they get to do the chest entry and there is not too much scar tissue. The cardio thoracic surgeon said I would probably have a chest tube in for a few weeks, maybe even have to fly home with one.

    • David Stuart Says:

      I don’t have a date yet. I sent a message to Heather and she got back to me and said we’d have a telephone contact next week and talk about dates and insurance and costs. It seems so far off but I look forward to it. What made the doc so reassured that he’d be able to help initially? I’m glad that there’s options for you! It’s a little off the beaten path but I’m sure he wouldn’t do it if he wasn’t confident. Consider yourself a pioneer. I’m proud of you for coming this far and hope the best.

      • catpowered Says:

        Make sure you ask for all facility and doctors involved. She will check with your insurance for Dr K but not for anyone else. You have anesthesia, hospital, the surgeon on back up, yes back up. Trust me. His initial fee of 75k he charges your insurance is only about 35-40% of what all will be charged. Just a heads up. I ran into being told all was good then had to deal with the extras. She is super helpful but will not check everything.

      • Judy Says:

        David I sent all my records last year. When he called me initially he asked me to send him the or report of when the injury occurred and then the one when I had lung surgery a few months later. when he showed those to the 2 cardio thoracic surgeons they said that type of lung surgery can leave lots of scar tissue. So that is why he called me a second time. Only the cardio thoracic surgeon in NJ is willing to try.
        thanks for the advice Catpowered. I have had so many major surgeries, mostly on my spine in the last 7 years I am used to everyone billing me. The very first time I was waiting for the cleaning staff to send a bill!!
        I had a spine surgery in June, it was a huge one, the bill from the hospital was $750,000. that did not include any doctors. I was in intensive care a few days, a few extra because they had no place to put me .
        My surgeon was awesome, he didn’t take my insurance and only charged me $1500 for 3 spine surgeries incuding my whole spine.

      • catpowered Says:

        Wow. You are very fortunate.

      • Judy Says:

        I really was so fortunate to find the surgeon I did. My regular spine surgeon who I love, was afraid to try anything with my spine, he said it was too dangerous. I would have stayed all hunched over for life and probably in a wheelchair soon . I don’t give up.
        Dee thank you for your update on what you can do. I already had 2 nightmare sniff test reads .
        The doctor that did the one stating my diaphragm was paralyzed actually showed me the screen so I saw no matter what I did, it didn’t move.

  154. Dee Says:

    Since my surgery with DR K in june of 2014 I have been able to run some laps at the Y and able to do some moderate hiking.. Have not tried swimming in a long time since when I tried it after surgery I could only swim one lap before I was gasping for air… and I use to coach a swimming team// MY suggestion to ALL .. be sure and find someone that is qualified to read a sniff test… I have found out that there are a lot of people that claim they can but are idiots when it comes to reading the test properly.

  155. Molly Jesberger Says:

    Hi everyone! Sorry I haven’t updated in awhile..I’ve had a few setbacks. Not sure if they all are related in any way to my ‘condition’, but one definitely was. About 3 weeks post op (I am almost 8 weeks now) from my surgery with Dr. Kaufman, I noticed that my shortness of breath was getting worse instead of better. My family doc ordered a cxr and it showed atelectasis in my left lung (my ‘good’ lung!). I kinda freaked out, but long story short..they didn’t have me do the incentive spirometer in the hospital and if they had, I may not have developed that. When Dr. Kaufman asked me about it at my follow up appointment he was quite upset that they didn’t. Just a heads up for those who will be having the surgery…be your own advocate in the hospital and if they don’t offer it, ask for it. Everything happens so fast with only being there one night..Currently I am being tested for RA and Lupus because of some symptoms I’m having. I also may have a torn right rotator cuff and IT Band syndrome in my left hip and knee. I start physical therapy for those on Monday. I’m still trying to find a physical/pulmonary rehab therapist that can handle my diaphragm therapy. I’m not having any luck in my area (Northern Ohio)and I need to start soon. Those who have had the phrenic nerve bypass..what kind of therapist did you see? I feel like I’m kind of on my own in my search and Dr. Kaufman stressed how important rehab is but he wants a specially trained therapist that has taken the course ‘If You Can’t Breathe, You Can’t Function’. I don’t really want to travel far for therapy, but I will do what is necessary. As far as how I feel..the x ray showed that there is no change in my right hemi diaphragm…YET!! I am optimistic that there will be though! My breathing is about the same but I’m pretty out of shape after all of this. It’s been a very rough 8 months for me but I’m hoping after I get moving around more it will improve. Time will tell…

    • catpowered Says:

      Look up Dr Mary Massery in Chicago. Hard to get in to. Also Dr Eli Lopes I n Indianapolis. She is great. A branch off Mary. If you google Mary you can call her office and a Robin I think can get with her and inform you of PT persons she has trained closer to you.

      • Juanita Says:

        I just started FB page
        Diaphragm Paralysis Public Library. I’m going to try to make it very special and educating

    • catpowered Says:

      Mary has some you tubes also. Mary Massery you tube search. Good luck.

      • Molly Jesberger Says:

        Thanks Cat! I have researched Dr. Massery and looked at some of her videos. I saw that there was a phone # and even her email address and thought about contacting her! I think I will do that tomorrow.I’ll look into Dr. Lopes too. Thanks again :)

      • catpowered Says:

        Anytime. I had a bad post op experience too. Sorry to say…. Dr Massery was a 6 month wait. Dr Lopes was about 3 weeks. Then was a weekly for the three months I saw her. You’ll learn a lot you and a partner can do on your own. The huff to clear. Accessory lower thoracic expansion. All helpful.

      • Judy Says:

        Brenda I am in southern California. Where are you? It seems to me like anyone on here is more from the East. I certainly feel alone in the west. I am going to go to NJ to have my surgery even though DrKaufman comes to UCLA. I need to have a cardio thoracic surgeon as well as the damage occurred during a thoracic spine surgery and the cardio thoracic surgeon here has never operated with DRKaufman and is not willing to take on my case. I am hoping to go in March. I am thankful for the tips from Molly and I will remember them.
        Good luck to you. I am kind of the same way. Anytime I exert myself a little I am out of breathe. I used to be a mountain trail runner before the damage was done. Now I cant make it up one flight of stairs without being out of breath.
        Thank you for your prayers Brenda and the very same for you

      • Brenda Jordan Says:

        Judy I am in Chattanooga, TN area. Hang in there and I wish you the very best. XXX

    • Judy Says:

      Molly, I am so sorry you have had so many problems. YOu sound like me now. With my spine, hip replacement, drop foot , endocrine system shutdown. Always something. Thank you for the heads up about the spirometer. I was sometimes given one in the hospital after my spine surgeries, but not always . They are usualy way out of reach. My ex would only come right before visiting hours ended so I didn’t think of asking anyone to get me one. I also already have
      atelectasis on my good side. I will be very careful. If they do get to free up my nerve it will be through my chest so I will be in the hospital for a few days at the least.
      Do you know much about the diaphragm pacer he uses? It is one of my options and I looked it up and saw this outside plug on your body. Not sure I want that. I did search further and found Avery biomechanics or some such named company has one where you do not have the outside plug, you still have to wear the box thing , but at least no plug to worry about. I would possibly try that one if he cannot free up my nerve.
      Molly I wish you luck in finding someone to help you. When I see my pulmonologist next month, I will ask him about the specific diaphragm rehab. I am hoping to go to NJ in March for surgery.

      • Molly Jesberger Says:

        Thanks Judy! Sometimes it’s hard to tell if one thing leads to another with these crazy illnesses! I’m hoping that my body is just worn out from the stress of all of this and that it’s not lupus or RA. The blood work should give me an answer. Do they think your atelectasis is from a surgery or don’t they know? Sorry, but I don’t know much about the diaphragm pacer. He did mention to me that it could be a possibility for me down the road if the graph doesn’t take but he didn’t really elaborate. Good luck to you as well!

      • Judy Says:

        Molly I do think the atelectasis is from the original surgical injury and the time it took them to revive me after. At least that is what I assume, I haven’t had any respiratory illnesses since then, thankfully. I hope you do not have lupus or RA, I was checked for those as well around 2005. It ended up I have pituitary failure. It is a small gland at the base of the brain that is called the master gland, it controls all the hormones in your body. It is amazing all the things I have to replace and it is still not like the real thing. One fluctuation in one hormone changes the needs of all the others, it is a constant juggling match.
        The most annoying symptom of this breathing problem is being tired all the time. My pulmonologist told me years ago I would always be tired as I use a lot of energy to breathe. Not good!!

      • Molly Jesberger Says:

        I meant graft! Lol

    • Brenda Jordan Says:

      Molly,
      I am so sorry to hear of your complications! Thanks for your heads up to those of us who might be having surgery about the Incentive spirometer …….I hope and pray that you have some positive changes in your breathing soon.
      I have tried to get help with diaphragm therapy and my pulmonologist told me that it would not help with this condition. I am currently looking for another one.
      I didn’t realize just how much this condition impacts my breathing. I mean I am short of breath when I take a brisk walk or do something aerobic. What really brought it home was when my family from Australia was home for Christmas and we went to the Lost Sea in Sweetwater, TN . It’s a underground lake in a cave. To walk out of there was a steep and hard climb. I had to stop 3 times and I was huffing and puffing. This is not like me!! I have always been able to do this kind of thing with no problems at all…… It made my son realize the impact I am sure……t left me with the cold hard facts of this condition……….
      I know how you feel when you say you feel like you are on your own searching for a specially trained therapist…. I believe we all should start a new group called ” Paralyzed Phrenic Nerve Survivors” and get some attention to the fact that this condition exists and there’s little help or knowledge about it. We could have chapter fund raisers, etc for research and get on the news………If only I knew where to begin and who would actually do the research……….We need a list of everyone on here and where they live. Just knowing there are others out there with the same condition helps to know that you aren’t alone. No one but someone who has this condition can begin to truly understand what its like to have it.
      Good luck Molly and everyone out there. I hope you are having improvement and making some strides in feeling better. Praying for this group.
      Brenda Jordan

      • Joan Marven Says:

        Joan Marven……BC Canada. So much luck to you Molly, so sorry you are having to go through this.

        Sent from my iPad

        >

      • Molly Jesberger Says:

        Hi Brenda, You are so right about the impact that not breathing well can have! It seems like it has affected pretty much every aspect of my life. Some of the worst things for me are holding my granddaughters (ages almost 3 and 1 month). It’s not too bad with the baby yet. I can sit down and hold her, but to try and pick up the 3 year old, it almost completely cuts off my breathing..I also have been unable to do my job. I’m a daycare provider and simply can’t keep up with the kiddos.I’m only 54!! I’m also still using the bi pap at night which makes for a really fitful sleep for me. I could go on and on about all the issues, but you already know..Good idea about starting a new group..kind of an ‘awareness group’. Misery loves company, right?!

      • Brenda Jordan Says:

        Molly
        I am so sorry to hear of your difficulty picking up and holding your 3 year old granddaughter😥. That is so sad. Also giving up your daycare job…you are so young!
        I think we need to bring attention to this health issue for the public as well as the healthcare community. Most health care providers know nothing about this condition. If you tell them about it they have no idea what to say…health care providers need to know and understand this condition. It appears to be so rare is why this is true. Therefore no research is being done. Dr Kaufmann is doing awesome being the only surgeon in America (probably the world) performing surgery on people with PPN.
        Just my thoughts… I am so used to doctors being familiar with my health issues. It’s terrible when no doctor can or will help you in your hometown. You understand this I am sure.

      • Molly Jesberger Says:

        Thank you so much Joan!

  156. Dee Says:

    I hate to say this but there are very few physical therapists that have any idea as to how to retrain a diaphragm… why you ask .. because until Dr K came along ALL lung doctors told you that if you had a paralyzed diaphragm you had to live with it…. there was NO surgery to fix the problem… and I am sorry but I have learned that All rehab clinics will tell you that they can cure anything. Just breathe deeper and all will be ok…

    • Judy Says:

      Last year when I was taken off DrKaufman’s schedule his office gave me a list of therapists in the Los Angeles area for diaphragm strengthening. I found these people to be ridiculously expensive and never followed up with any of them. I think the need was always there before DrKaufman came along, just for people with breathing problems. My pulmonologist used to be the head of pulmonology at a good hospital near me. He knew of my active lifestyle and still hiking so he told me what I do is more than any diaphragm rehab would do for me, so I just continued what I was doing.

      • Vicki Beam Says:

        I have questions for everyone on this blog. My husband had surgery in 2014 to repair his mitral and tricuspid valves. After a very difficult surgery, he was taken off the ventilator the day after surgery – but was quickly reintubated after they discovered he was having such a hard time breathing. After 20 days they sent him home – still not really knowing what was going on and why he was having troubles breathing. After being persistent and getting him to many specialists it was finally determined that both sides of his phrenic nerve were paralyzed – and most Drs stated it was because of the icy slush they use during open heart surgery. Has anyone else had this happen? I have made contact with Dr Kaufman – but my husband is reluctant to discuss any additional surgeries – which I completely understand. Is this a common complication? He now sleeps with a bi-pay machine, we have purchased a sleep number bed that will incline his head, he is always tired and short of breath. Is there anything that can be done?

        On Sun, Jan 24, 2016 at 6:28 PM, Steve Croziers Blog wrote:

        > Judy commented: “Last year when I was taken off DrKaufman’s schedule his > office gave me a list of therapists in the Los Angeles area for diaphragm > strengthening. I found these people to be ridiculously expensive and never > followed up with any of them. I think the need was” >

      • Judy Says:

        Terry Selb I also live in southern California. I actually work at my endocrinologists Tuesday night clinic in Beverly Hills . He deals with rare endocrine conditions and is a researcher by day. I also have been given one of those rare conditions and did my research when I lived in ga which brought me to fly across country and see him. It was the best decision of my medical life .
        Back in 2011, I believe I found a father/’son surgeon pair in BH that I went to see .the dad had the idea of fixing the phrenic nerve, the son was a plastic surgeon who would do the actual surgery. I met them , all was positive, but at the time I was already scheduled for one of my many spine surgeries. They told me to contact them when I had recovered from it. I think close to a year had gone by when I contacted them again . They told me at this point that the surgery to repair my nerve was off because it had now been 2 years since the damage had been done and they thought it was too late. I was devastated , of course. Unfortunately I cannot remember at all how I found them.
        I think the only research you are going to find will be from DrKaufman. If someone else is out there repairing maybe one phrenic nerve or a few, we just don’t hear about them.
        When I had my first phone apt with dRKaufman he said it is not a cure at all, it is treatment ,. He said I would never gain all my function back, only hoping for improvement.
        I was also shown the monitor when I had my last sniff test. It showed no movement at all of my right hemi diaphragm. When I do have this surgery , I will certainly keep posting about my improvement.
        If you ever want to meet , let me know
        Judy

      • Juanita Says:

        I’d like to share my page with you on this matter. Facebook.com/diaphragm1paralysis/

      • Judy Says:

        Ok Juanita, I will look it up later today

  157. Brenda Says:

    Juanita I looked for your FB page but couldn’t find it.

  158. terry selb Says:

    I have made this query before and I feel compelled to ask it again. As far as I can tell, in terms of a raw number, this condition is so rare that it has not caught the eye or attention of any pharmaceutical companies or even marginally notable studies by authentic research clinics of any consequence. In other words, as noted by Blogger Steve at the outset of this blog, finding ANY meaningful information is extremely difficult, at best.
    I my many hours of digging into rabbit holes on the internet regarding this condition, I have found only ONE reasonably authoritative medical journal and/or study of this condition. This article was found (after exhaustive looking) authored by Dr. Issahar Ben-Dov from the Pulmonary Institute out of Tel Aviv University. (Warning: before you go digging into this article be sure and have a medical thesaurus handy because it is highly clinically based study that was not written for the general public). Most of his sources are from the 1980’s!
    What I am attempting t point out here is simply that we suffer from a problem that is so rare that there is little or no hope that anybody is going to put serious research dollars to help a numerically small number of actual “victims” of this disorder.
    The sole exception to this lack of research interest is Dr. K, who is mentioned and discussed frequently here. I have asked a couple of times on here and I ask again: who, if anyone (I have found one person so far), has had scientifically based data that Dr. K’s surgery has resulted in a complete reversal of the paralysis?
    I read with some sense of excitement and hope when someone posts a blog indicating that Dr. K will “accept” you as a candidate. But I then read with an increasing level of skepticism the actual anecdotal references to a surgical “cure” for this problem. Anecdotal references from these patients are interesting but I am much more interested in objective medically accepted post operation diagnosis.
    To me, it is a simple matter to determine if the surgery is successful: your diaphragm either shows movement or not. This does not require elaborate testing. I know this because when I first was diagnosed with this condition, my Pulmonologist was quite certain and SHOWED me the condition of my elevated diaphragm. It is “frozen” in the upper position. There is no movement. In a word, it is paralyzed.
    So it only follows that a post surgical set of x-rays would certainly demonstrate that the surgery worked and it is once again moving normally.
    As mentioned I have thus far found only ONE person who has definitively stated that. If there was any scientific evidence that this surgery had a reasonably high “success rate” I find it hard to believe that only one doctor in the entire world would be interested in engaging in this curative surgery. If nothing else, I am sure there are dozens of plastic surgeons here in Beverly Hills, (where I live) that would be pounding down the doors to charge 75,000 for doctor fees. Just food for thought.

    • gmanhart Says:

      Terry, you mirror my thoughts and I couldn’t have said it better. The question you pose must be asked.

    • Steve Crozier Says:

      Terry, very well put. I think your thinking pretty well reflects the current state of things. One small refinement: Dr Kaufman is repairing nerves, not diaphragms. So the diaphragm moving is really secondary to the surgery working. For example, in my own case, my nerve appears (via testing) to have regenerated completely. But my clinical symptoms are not much relieved, which could be due to too much atrophy in the muscle prior to surgery, poor rehab on my part, and possibly other reasons.

      And yes, we’re never going to have a “Race for the Cure” named after our condition. It’s just too rare. There’s no rule that says that everything bad that happens to people has to have a fix or cure.

      Dr Kaufman seems to be pioneering this type of surgery, and I think it’s reasonable to expect mixed results this early on. Whether any individual is willing to place a bet with those odds is a personal (and financial) decision.

    • catpowered Says:

      I had asked his office at one point the same thing you’re considering here. My opinion is if the diaphragm moves again the surgery could be the factor of success. But the answer I have been given a couple times is if you feel better then they grade it as a success regardless whether the diaphragm moves or not. I was in shock. The only person I have talked to who has confirmed movement was a surgery performed at about six months out I believe. The sooner the better but it is recommended you wait because about 25% will return to function within a year. I can’t testify as to how he is doing now, that was January 2015 last check. His recovering left side could have very well been in the 25% category. Bad news related to that is about 25% of these that do recover will be all that will continue to have movement. It will stop again. (Spontaneous recovery) PT with the right person did me more good than anything else no doubt about it. Accessory breathing muscle conditioning, huff procedure for clearing…. I am skeptical as well but when you search doing nothing isn’t an option you want to consider and there you go, on your way to NJ.

      When having a PFT I was at about 58% prior to surgery. After the surgery the doctors office once they got me out of the woods from all of the infection I acquired they basically ignored me for eight months. We were so disappointed. We would call with no replies email with no replies. Finally when I got into PT Dr. Mary Massery she made contact with Dr. K and the communication started slightly after that.

      I hate to say it but I still would probably try it again. Once I went to Indianapolis to continue physical therapy after a couple weeks which was about four visits I felt improvement. But again this was training accessory muscles to expand the chest cavity to assist in breathing. I guess what I’m trying to say is with some good physical therapy with a highly trained person you could be graded as a success case without the surgery based off of the parameters they use. Doesn’t seem fair does it? I’m betting I’m not a case they consider a failure because who takes the blame for the MRSA and Pseudmonas I acquired during surgery? That took many months to recovery from.

      I am bitter as you can read. I’m trying to move on, keep my job…. It’s hard. I have emailed both girls assigned to me who I know are still there because I’ve seen their names on this blog and called twice to investigate about the pacemaker. Just wanting some info…. No replies or returned calls so I’m guessing they would rather not risk me again.

      It’s a small world. I feel like you all are my friends… Another gentlemen I spoke to that has this was my nephews trainer for the state police, I met another at PT and my brother has been diagnosed last April. Dr K would not return my request to discuss my brother as I was inquiring about hereditary concerns…. I’m right side right handed. He is left and left. We just keep going.

      • Judy Says:

        catpowered, I hadn’t realized you had to deal with MRSA and the other complication you mentioned. If I were in your shoes, I would feel the same way you do . No reason to ignore you now. I’m sorry this happened to you.
        I am still very upset and bitter about the surgeon that damaged my phrenic nerve in 2009 and then told me the one time he would answer me that nothing happened in surgery. Didn’t he think I would get the op report and see as soon as he did the beginning of removing the disc at T 7-8 that he had problems with my lung. I know when you have surgery it is always a risk. But this guy walked out of the or and went home, never returned to the hospital. I begged him on the phone to come and tell me why I could no longer breathe very well. He told his staff he was com9ng to see me and they were shocked every day I called to say he didn’t show up even though he was at the hospital operating. He should be paying for this surgery in NJ. I tried to sue, but could not get a lawyer to take my case, in the state of Ca you only have one year anyway. the first 4 months were trying to convince pulmonologists that something happened in surgery and I did not have a pulmonary disease or cancer. I still believe the surgeon let his fellow do the surgery. This guy was on his way to start his own practice in Las Vegas. I found on a spine forum a young man who had the same surgery one week before me , same level of his spine. He came out of the surgery paralyzed from the waist down. He remains that way too.

        Life does go on. I know my first phone apt with DR Kufman, he gave me a 70-80% success rate. I am sure my odds are way down now once the cardio thoracic surgeons put in their opinions. I am having a ct scan of my chest and abdomen this coming WEd which will give them a better idea of the scar tissue situation.
        Dr K did mention if they could not free the nerve , he could put in a pacemaker. He said he would have to talk to me about that option.
        I did look them up, although the cardiac pacemaker is the size of a pill now, the one for the diaphragm is not . In most cases, they just place the wires in the diaphragm and you have a plug on your outside. Then you have to wear a box , which doesn’t look too small outside . I found one company, Avery that has the wires and other components inside, but you still wear the box on the outside. I am hoping this is the type he uses. I read the pacemaker is also treatment for central sleep apnea, which I do haave. It would be nice not to have to use my cpap type machine. This is the type of apnea where the brain just forgets to send the signal to breathe . I will certainly share anything I learn about the pacemaker. I just don’t know if I want to have an outside plug . It can not get wet, which would be a pain and surely eliminate swimming. You are at a risk for infection all the time. I hope he uses the Avery type .

      • catpowered Says:

        I highly recommended to anyone moving forward with the procedure to make sure you have a great family doctor, great pulmonary doctor and PT pre planned, months in advance. Your doctors need to converse prior to the procedure to make sure they are all on the same page and understand what it is you are having done, in detail. I had a few days delay after I was admitted trying to get doctors in Indianapolis to get ahold of, not a nurse, but Dr K to talk to them. He talked to a floor supervisor and his nurse talked to one of my Dr’s but one of the main Dr’s in Indy insisted on talking to him when I’m trying to explain what was done and they have never heard of it…. It was a delay.

        I can’t stress how important it is to be as prepared as you can.

      • Judy Says:

        Thank you so much catpowered for all the great info you are giving us. I do have a great pulmonary doc , i’m very lucky to have him. My primary is a bit too cautious. I had hours and hours of spine surgery this past summer, which she gave me clearance for. then I decided to have eye surgery for a muscle imbalance seeing I had met all my out of pocket expenses and she got a little crazy and would not send in my clearance , she didn’t do it until a day before surgery. Because of that I could not have anesthesia for the surgery had to do it awake. I was really not happy with her. I hope when I see her she understands it has to be in soon and not the day before. I don’t want to fly to NJ and find out I cant have surgery do to her.

  159. terry selb Says:

    I must say, Steve, that your response to my post was both reassuring and a little upsetting at the same time. You appear to be one of the “pioneers” in looking for a surgical curative solution and enough time has passed (in my opinion) that any real effect would have been realized by you.
    I should add, just for information sake, that some advice and reassurance I have read on this very valuable blog you created, has proved to be correct: namely, that if you are new to this problem –which I was 6 months ago- give your body some time to start making adjustments. I am happy to report that I have noticed, very gradually but noticeable nonetheless, a definite improvement in my ability to walk at a more normal pace. I can now walk up a couple of flights of stairs and still feel a little “breathy” but nothing like 6 months ago when 1 flight of stairs would make me pant for breath. No miracles, no sudden transformations but I can tell that, as time moves along and I move with it that little by little my condition will improve. I’ll never run a marathon but in time I think I’ll be able to play a round of 9 holes of golf again.

  160. Judy Says:

    Steve I think DrKaufman is also helping with diaphragm function in other ways. One being the diaphragm muscle transfer, which I have not spoken to him about and also the diaphragm pacemaker. I may only have a chance at a diaphragm pacemaker if I have too much scar tissue to free up my phrenic nerve.

  161. Rob Senatore Says:

    Hi Terry, I think you have stated many points that I have spent much time examining in my head. I am a 64 year old former marathon runner who is 2 1/2 years into my recovery from phrenic nerve transfer surgery performed by the wonderful Dr. Kaufman. I have not been cured , although my condition has not worsened.
    I went thru this procedure clinging to a resilient hope that my left lung paralysis could be reversed. I still maintain that same hope. I exercise , eat well and try to get sufficient rest . I send 3-6 month progress reports on my physical and mental state to Heather. I wish that Dr. Kaufman can use my personal progress as an aid to him being able to perfect this procedure and maybe discover additional ways to help other patients in the future to acquire greater gains from the operation. I have learned thru this experience the importance of using my mind to heal my body.

    • Dee Says:

      Rob , I am a hiker that is one and a half year into recovery..The trouble is I live in a small city that the best test I can get is the sniff test and I DO NOT trust the people reading the info. I too would agree that my condition has not got any worse. Trying to get back into hiking but elevation gains are really tough. My metal state is great,but am not happy that my lung doctor has very little to do with me but call to see me every six months. May have to fly up to NJ to get a proper EMG

      • Rob Senatore Says:

        My lung doctor is very good .He was the one who correctly diagnosed my phrenic nerve damage after my primary doctor , my cardiologist and my gastro doctor all were baffled. I see my pulmonologist every 8-12 months for a complete check up . He carefully compares previous pulmonary function tests and chest x-rays. He strongly encourages me to try and do all the same things I did before this situation occurred, albeit to a lesser degree of course. I still run , but, slower and shorter distances . He advises me to keep my immune system up to par as to prevent pneumonia or other debilitating diseases from coming on. Lastly, he believes I had two traumatic episodes in the last three years. First, the phrenic nerve degeneration causing the lung paralysis and secondly the failure of the operation correcting the paralysis. This way I have to understand that I need to adjust my life correctly by accepting my health issue and not letting it ruin my life anymore than it has.

      • gmanhart Says:

        I have a left paralyzed diaphragm but curious if there is widely varying degrees of affect from this. One would think that if it’s paralyzed the affect is close to the same for all patients. I don’t believe this is the case. In my reading some patients didn’t know they had a paralyzed diaphragm until it until it was accidentally discovered. Doctors stated that they were asymptomatic. I would say my symptoms don’t affect me unless I run or exert myself quite a little. In addition, I notice it when I carry a heavy object for some distance. Otherwise I wouldn’t know anything was wrong. My Question: do others have left diaphragm paralysis with different symptoms? That is, more than mine or less?

      • Judy Says:

        Hi,
        I have a right paralyzed side, but I do have shortness of breath for any slight exertion. Even up one flight of stairs. I used to be a mountain trail runner before the injury during a spine surgery. I do feel this last couple of years that just sitting and breathing feels weird or labored . A bit anyway. I took a meditation class and the person in charge kept repeating to think about your breathing. At the end he asked me what I felt about the class as I was new. I told him that focusing on my breathing was terrible because it made me so aware of how bad it was.
        I am just needing to exercise closer to the level I was at. I know I will never be back to normal, but I do want more.
        I am also afraid to go to the high mountains as I know the air is thinner

      • gmanhart Says:

        My doctor told me that I can do any physical activity that I want and I plan to do that. I hope you can do the same and my heart goes out to you.

      • Judy Says:

        I still go hiking instead of running. But it is very hard and too slow for anyone to want to come with me. That totally limits where I go. I used to swim laps too, but that is not possible. I am going to let DrKaufman try to fix this problem. I am going to NJ for surgery on March 11th. I will be sure to keep everyone informed on my progress.

    • catpowered Says:

      Rob do you get replies, acknowledgement when you send your reports? I email them with questions, both girls and never get replies. I had a very bad experience and feel
      Like they really wanted me to go away I hate to say. I know that’s not how they make everyone feel but I have to say my wife and I have been so disappointed with the after support.

      • iandharris Says:

        Gmanhart good morning from Hong Kong. I’ve a paralyzed RIGHT hemi-diaphragm but from out of the blue, having woken with severe neck and shoulder pain last April. Carrying heavy things same for me, but its also difficult breathing laying flat or on my left side, and when about mid-west deep on water. This latter was the most surprising to me, especially that once shoulder deep or swimming, I cannot draw any breath in at all, ie can’t breathe. Running is similar, with every step, I can’t breathe for a few moments, meaning that I can’t keep up with my daughter now as have to slow down enough to get some air. Interestingly, although I fly at least weekly (was in Singapore, India and Shanghai last week), I’ve never experienced any breathing issues onboard despite the lowered cabin pressure.
        I do try to find something positive in all of this, for example, it’s not BOTH sides (although I had very significant nerve damage to my left arm and side that same night), and it’s made me call for help from my kids when shopping, and so we do that together now,etc .

      • iandharris Says:

        Gmanhart good morning from Hong Kong. I’m an Englishman and I’ve a paralyzed RIGHT hemi-diaphragm but from out of the blue, having woken with severe neck and shoulder pain last April. Carrying heavy things same for me, but its also difficult breathing laying flat or on my left side, and when about mid-waist deep in water. This latter was the most surprising to me, especially that once shoulder deep or swimming, I cannot draw any breath in at all, ie can’t breathe. Running is similar, with every step, I can’t breathe for a few moments, meaning that I can’t keep up with my daughter now as have to slow down enough to get some air. Interestingly, although I fly at least weekly (was in Singapore, India and Shanghai last week), I’ve never experienced any breathing issues onboard despite the lowered cabin pressure.
        I do try to find something positive in all of this, for example, it’s not BOTH sides (although I had very significant nerve damage to my left arm and side that same night), and it’s made me call for help from my kids when shopping, and so we do that together now,etc .

      • gmanhart Says:

        My diaphragm paralysis came out of the blue also. It began with severe pain in my right shoulder. A few days later I couldn’t breath laying on my back. I was diagnosed with bilateral diaphragm paralysis. Fortunately, after 15 months my right side healed completely but I still have a mostly paralyzed left diaphragm. Doctors think it may have been caused by a viral infection. I did have a slight fever prior but I have a hard time believing they are related. I did some heavy work over my head the night before. Maybe a combination of the two. I just don’t know. I’m telling you this because you might be able to trace it to something.

  162. terry selb Says:

    I am a lawyer, not a doctor. Having said that, I am confused why a sniff test would be significant if your lung is completely paralyzed, as is mine. In my case, it is considered “highly elevated”, meaning, I can clearly see that my diaphragm is sitting in the “up” position. Six months later I got another one and (not to my surprise) its in exactly the same spot it was when I was saw the first one. I think it’s a pretty straightforward approach towards determining if there is ANY movement.
    Rob, I think that my single biggest enemy in dealing with this problem is NOT what is happening inside my lung but rather what goes on inside me HEAD. It is emotionally taxing and I have found that the only way I can really deal with this is to stay in the present moment and NOT think about “what the rest of my life will be like” or, even worse, holding some falsely held belief (this is just my opinion) that I will wake up one day and it will start working again. Acceptance, to me. Is the key towards happiness in dealing with this problem. This blog has been a critical link to dealing with this. As others have said: this can feel like a very lonely spot to be in and this blog makes an enormous contribution towards softening that feeling.

    • Nanci Says:

      Thank you for that message Terry. I have been on this blog since March, and just now going back a ways to read new name responses. Trying to keep in the moment, especially when I get in the “is this the rest of my life norm?”.

  163. Judy Says:

    My surgery in NJ is booked I will have it on March 11th. My first appointment is on the 9th. My daughter is coming with me and she wants to go to NY city before , so I guess I will go a day or 2 early. The one thing that is not firm is how long I should stay. If they cannot free up my phrenic nerve and I agree to the pacemaker it would be a much shorter trip.

    • David Stuart Says:

      My surgery is scheduled for March 18. I’m not seeing much positive reports from people on here. I thought some were getting at least decent reports. Pretty discouraged now I guess. Well best of luck to you. Maybe we can come back with a positive note. Did Dr K ever say anything about reforming scar tissue where he decompresses the nerve?

      • Dee Says:

        David there are a lot of people not on this blog.. There is a man in Charlotte named Gordon that says his breathing has improved 90% since the surgery but he chooses not to participate…The surgery at least offers all of us hope…Which if I had done what my doctor here told me and that was to live with it.Nerve grafting is a very very slow process…. The issue for a lot of us is finding someone in our area that is qualified to tell us if things are better…. I had a sniff test here then had the EMG in Jersey before surgery… My wife swares that she can see me breathing better…. Have hope … just remember patience patience … Which I have been told I have none of.

      • Kathi Bean Says:

        I wanted to let everyone know how thankful we are for Dr. Kaufman and his surgery. My husband had a paralyzed diaphragm and was scheduled for plication. Thanks to the patient testimonies we found here and on Dr. Kaufman s website we had his surgery with only 50 percent chance. 3 months later… It worked and he is breathing better and has started physical therapy. In time we hope for full recovery.

      • Judy Says:

        I was getting pretty discouraged too David. Then I thought about it and realized there are just a handful of DrKaufman’s patients on here. Like all things we tend to complain about the bad, and say nothing about the good. so people that have recovered are just not on here. If DrKaufman does get to do the nerve grafting on me, I will still be there when you have your surgery. You probably have a few appointments like I do earlier in the week, I see the pt on the wed before and meet DrKaufman on Thursday. If your schedule is the same as mine I should still be there when you arrive. Let me know if you want to try to meet up. I hope you see Thomas Maddalla’s post, very positive.
        He didn’t mention reforming scar tissue as I remember. He did say he would also attach a nerve from some intercostal space to act immedietly. But I am having chest surgery so that may be different for those of you that have neck surgery. I may have to stay 2 weeks if they do get my nerve freed up as the cardio thoracic surgeon thought I would need an extended time with a chest tube. I don’t know why. I may have to fly home with it in and find someone here who will help me with it once home.

      • David Stuart Says:

        Thanks for the encouragement Dee and Judy. I do tend to forget that there’s only a few on here that have actually had the surgery. I’m definitely a patience lacking person myself. Judy, I haven’t received my actual itinerary yet from Heather but I’m guessing it will be similar to yours. I would assume I’m having the neck surgery. Dr Kaufman made no mention of going in the chest. I assume if he does any chest procedure, it’d be done laparoscopically. What do you mean he said he’d attach a nerve from some intercostal space to act immediately? Isn’t that the basis of this whole procedure? Decompression and grafting. I guess he has more info on you to make decisions already since you’ve had the emg. By the way, how was that? (Sorry if you’ve already told us, it’s late here and I don’t wanna go searching.)

      • Judy Says:

        Hi David,
        The EMG was no problem for me at all. I just had one needle stick in my diaphragm, I didn’t even feel it. Then the other part is testing the phrenic nerve at my neck, just little shocks. No biggie at all.
        THe reason I am having chest surgery, if they can do it, is because my damage to my nerve was done during thoracic spine surgery. It will be an open procedure too, no laproscopic approach . I will be in the hospital for a few days. I may also have an extended stay in NJ as I may need a chest tube in for a few weeks.
        Yes the point is to free up and get the phrenic nerve working again ,but that is not instant results. For me if he does get to free it up in my chest he is also going to attach an intercostal nerve which has no problems to give me some juice right away while I wait for the phrenic never to work again.

  164. Dee Says:

    I feel that everyone has a different degree of paralyzed diaphragm… I was in a wreck in August of 2006 .. NO lack of breathing appeared for four years … or it was so minor that I did not notice… My wife and I even started a hiking club in 2008 thinking All was fine….It was not until 2012 or later that I began to notice my lack of breathing on hikes… My family doctor treated me for allergies, asthma, exercised induced asthma finally after x ray and MRI.. a paralyzed diaphragm was the problem. My phrenic nerve apparently over time separated since NO surgery of any kind can be the cause because I had not had ANY SURGERY. The wreck began the problem… had the surgery and now plan to see if a sniff test will tell us anything , after almost 2 years after the surgery.

  165. Thomas Maddalla Says:

    Hi Dee Happy to hear you are doing better. Mine actually showed great results after the second year, but the real test was the third year when all the tests showed 100%.recovery. I follow the Blog every day sense 2012. I tear up when I hear some of the situations people have with this condition and i try to follow most like they are my own family. Just wanted to say your two years of hard work is finally starting to pay off and your next year will make you shine. Remember that Rome wasn’t built in a day. Get all the therapy you can and swim as often as you can as this was very helpful to me. Don’t be afraid of going into the water and doing deep breathing exercises to get the lungs back in shape. Keep up the good work and the best of luck to everyone.

    • Dee Says:

      thanks I needed that… My wife and I are going to a trainer and she is really making me work on breathing right… I dream of the day that I can hike with my hiking club every time…

    • John2016 Says:

      Hello,
      I am new to this blog, have read it in its entirety, have been looking for a response like the one I just read ( Thomas Maddalla ). Positive, it gives me hope.
      Discovered in January that I have right sided diaphragmatic paralysis after a series of tests ( sniff test etc. ) Its suspected, have had it for 6 years, since my robotic mitral valve repair 2009 which was a failure), and have had it replaced in 2012.
      I have a very physically demanding job, not wanting to reveal for fear of loosing it. On the younger side of those that suffer from this, managing myself best possible, but uphill and lying down are tryin
      Its believed after 6 years, my diaphragm must be atrophied. I am aware, and spoke to Dr. kaufman last week, that he can replace a diaphragm? not sure if it would require any anti immunity drugs etc.?
      Waiting to be scheduled for a nerve test. Consulted with a very good surgeon today that told me, splicing phrenic nerves doesnt work. Ilso have read on here that quite a few people have had no or little success. this surgeon wants to give me plication. i am at 73 percent standing, and 50 percent lying down.
      Wondering if those that have had success, are the ones that have had decompressed nerves, or have only had this condition for a year or so.
      Hoping that there are many others with positive result that have not blogged, but that have been fixed.
      I wish I knew more about Thomas’s story. what needed to be done exactly. 100 percent recovery is outstanding to say the least. with plication, I’m told it could get me halfway back to normal. is this procedure worth it?

  166. John2016 Says:

    Thomas, your the only one here who has complete recovery. do you know of others?
    I am waiting for a scheduling of nerve testing, and have spoken with Doc Kaufman.
    a conference with a good surgeon today in a hospital that used to do phrenic nerve splicing, told me they stopped because it simply doesnt work.
    Tough news to here

  167. john2016site Says:

    Hi,
    New here.
    Thomas is the only one after reading all the posts to this blog, that has had complete success.
    I conferred with Doc Kaufman last week, and am scheduling a nerve test soon
    A very good surgeon from a very good hospital told me today they used to splice phrenic nerves but stopped because it simply doesnt work
    I am feeling some skepticism after reading all these blogs
    right sided diaphragmatic here, just found out in January. most likely due to 2009 mitral valve repair robotically
    Also, after 6 years my diaphragm is certainly wasted away, atrophied, but Doc Kaufman claims to do muscle repair of Diaphragm. Anyone have this done? muscle repair of diaphragm successfully?
    Thanks,

    • Brenda Jordan Says:

      John
      It is my understanding that if you have plication surgery, you will never be able to have the surgery that Dr Kaufman performs. Just wanted you to be aware of that.
      I have unilateral left side paralysis. I have not had surgery…. Just keeping up with others here on the blog. It always saddens me to see the new folks on here with this debilitating condition… 😥
      Could it be possible that your damage was actually done during the 2012 surgery? My damage was done from a nerve block for shoulder surgery but it didn’t become obvious for about 5-6 months.
      I wish you the best of luck and hope there is something that can be done to help you.

    • Judy Says:

      Hi John,
      I am curious if DrKaufman spoke to you about the diaphragm muscle transplantation. My damage to my right side occurred during a thoracic spine surgery at the end of 2009. He spoke to me about repairing the nerve and seeing he would be in my chest also attaching one of the intercostal nerves to my diaphragm for an immediate relief, small but immediate. I am having my surgery on March 11th in NJ

    • Thomas Maddalla Says:

      Hi John, I’m sure I am not the lucky one that survived. I think that if they assigned everyone with a number on the blog, we would find a lot of numbers missing. Many of our people haven’t stayed with the blog for one reason or another it seems. Dr. kaufman has dealt with hundreds and hundreds of the various cases that vary widely as to cause and effect. I Know that my number was i think #21 and that was in 2011 or 2012.But I can tell you that you have come to the right place even if it is the only place in town. Sometimes I find people here using terms that I’m not familiar with, Not being a doctor,But i’m sure they are well intended as some of our people have been really put through the ringer because these injury’s are so misunderstood by the medical community.I certainly would not be scared away by a doctor that says it doesn’t work,as he is only saying that he can not. Good luck with your upcoming repair. We will be praying for you.

  168. Janet Says:

    What incredible information this post has for one like myself who just had a procedure to fix my a-fib and flutter. The Doc did an ablation last week and though the procedure appears to be successful, I now have nerve damage and a collapsed lung. I cannot breathe right, cannot sleep in a lying down mode, cough all the time, have severe headaches, pains in my neck & am told to stay away from children since I am so susceptible to pneumonia. I have so many children around me always and this would be very difficult. The pulmonologist told me that this would not be life changing but I obviously disagree. I just had a SNIFF test and a CAT scan and the SNIFF test (done by a Dr of Radiology) clearly showed I had phrenic nerve injury which paralyzed my diaphragm and collapsed my right lung. I went into the computer to gather more information and was incredibly lucky to find all this information. thank you all for empowering the rest of us with such great documentation.

    • Brenda Jordan Says:

      Janet
      I am so very sorry that your heart ablation ended up causing a paralyzed phrenic nerve…. After being tired and worn out from the afib I am sure you were hoping that the ablation would give you better health and more energy.
      It really upsets me to hear your pulmonologist said this won’t change your life… Mine told me it wouldn’t kill me….,I believe they say these kind of things because most times this is caused by a doctor during surgery and doctors stick together… Unbelievable that they can shrug off such a life changing health condition.
      I would like for them to walk in our shoes for a few days and then say it won’t change your life!!
      My sister is scheduled for heart ablation next month in Knoxville, TN. I am more concerned now ..
      I had a physician assistant tell me that they told her in medical school if you damage the phrenic nerve your medical career is history ..,it’s over….. I think when you sign on the bottom line that rare things can happen during and after surgery, there’s not much you can do. I find it amazing that during my 62 years and lots of different surgeries, it was never ever mentioned by a doctor, anesthesiologist , or in paperwork that damage could be done to the phrenic nerve….. I had never heard of it and frankly didn’t even know what the phrenic nerve was. After reading this blog and seeing all the people affected by this, it DEFINITELY should be mentioned as a possibility.
      It is said that a damaged phrenic nerve can be healed and that it can take over a year… Not sure how often that happens but hopefully that will happen for some folks on here.
      Regards to all of this group.

      • Janet Says:

        Thanks Brenda, I am now taking penicillin since they believe I have pneumonia. Dr. tells me that I will slowly recoup from this. Am going to see him next week with all info I was able to find including this blog. Thank you again.

  169. Terry Selb Says:

    I just want to note that I am amazed at how many people have had this problem occur as a result of unrelated surgical procedures. Good God! I hope these surgeons made you aware of this possible adverse critical problem that could arise from the procedure.

  170. Judy Says:

    David Stuart,
    I received a statement from my insurance co, Blue Shield letting me know the hospital is in network, but DrK is not. Ok that part is to be expected. I think someone at the office has us confused. My surgery date is listed as March 18th , then it lists the requested services. They all have to do with neck surgery. I tried to contact Heather today, but she is out of the office until Tuesday. I was told to call Heidi tomorrow , which I will. I was just wondering if the 2 of us are switched and if so , did you receive my surgery info? Do you have Blue Shield?
    Judy

    • David Stuart Says:

      I haven’t gotten ant statements yet from bcbs. I do have anthem. I have gotten my appointment paperwork from Dr Brown and today I received my packet from Dr Kaufman’s office. All of it looks to be set for the 18.

      • Judy Says:

        Hi David,
        Thanks for replying. I totally forgot to call the office today to discuss my paperwork and surgery being mixed up with someone else. I have to write myself a note so I can call tomorrow. We may just meet then if you don’t mind. If you would rather not, that is ok, just let me know.

      • Dee Says:

        we never understood why one doctor was in network and a hospital or another doctor down the street was out of network.. I CAN ASSURE YOU OF THIS… THE INSURANCE COMPANIES DO NOTHING TO BENEFIT YOU. My bills came to about a quarter of a million before the negotiating began with the insurance companies.

      • Steve Crozier Says:

        Dee, I don’t think insurance networks have anything to do with geography. They are agreements negotiated individually with hospitals, doctors, and other providers. No reason to expect that a doctor “down the street” would be in the same network.

      • Dee Says:

        I just dont think the insurance companies work on my behalf ..They are in the business of making money…

  171. John2016 Says:

    first,
    sorry to blog three times on same thing in three different ways. I didnt think it went through, so I kept rewriting till I felt satisfied that it posted

    • Judy Says:

      Hi John
      I just typed a response to you and it disappeared. Maybe mine will appear when I post this one.
      You bring up many good points. One I want to explain why it might be such a low success rate on here. When people have the surgery and everything goes as expected, they just go on with life. No need to look for a group of people to help them. I am in another rare group, I have panhypopituitarism. On the sites about this disease, we only hear from those having problems, not anyone that just goes on with life replacing all the hormones the pituitary gland needs to make. I know those people are out there as I work at a clinic for one of the researchers who has worked extensively on this disease. He has a clinic where people come from all over the world to get help. I flew out from Ga to see him in 2005 when I could not get any help from endocrinologists in GA. One of the best decisions of my life.

      I am having surgery with DRKaufman on March 11th. I hope this is another good decision.
      My lung capacity fluctuates between 42-50% sitting. About 4 years ago it was in the 60% range which was ok. I used to be a mountain trail runner. Now I can hike, only for a few miles and slowly. I have had a group of 3 year olds and their moms pass me . I really want to improve. Also the fatigue I have every day I am blaming on this. My pulmonologist told me I would be tired all the time as I am using a lot of energy to breathe. I need some improvement so I can get back to work too. I will certainly update on my surgery. I just had a chest and abdominal ct yesterday for dRK, he wants to try to get an idea of how much scar tissue I have . If they cannot free up my phrenic never in my chest, he is offering me a diaphragm pacemaker. I am not sure I am interested In the pacemaker, I would have to speak to him further about it before I made a decision.

  172. John2016 Says:

    I am completely aware that a plication would negate the reasoning to have a phrenic nerve repaired.Dr. Kaufman does diaphragm muscle replacement( as he has stated), couldn’t he reverse the plication procedure and fix the already atrophied diaphragm whether previously plicated or not? I dont know this answer, just theorizing.

    Next, its quite a weighing out process.
    Plication is quick, much more straight forward. More immediate in its result.
    I am told plication can get you back halfway. with a paralyzed right diaphragm, after several years, breathing at a total of 73 percent standing, and 50 percent lying.
    If plication got me to 86-87 percent standing and when active, and 75 percent lying down, well I think that would be pretty good? No?

    I guess I am wanting to know the down side to plication, other then affecting a future chance of splicing a nerve), weighing in the up side,
    and then weighing it against phrenic nerve repair.

    seems down side to phrenic nerve repair:

    1-long, long waiting period to grow back. 12 months to 3 years? Geese. From what I can gather, most people after even this time have minimal recovery( some of which is attributed to breathing technique and body adjustment to the condition.

    2-does it make the diaphragm move properly when it does?
    ( seems world class surgeons say no- gotta consider there standpoint ) Very plain english- quote” Phrenic nerve repair doesnt work” also, I do ask myself, why is there only one person doing this? Its not about just the rareness of the condition as some have suggested. Its really not that rare, rather, its fairly common. Also, other surgeons, hospitals, very good ones, used to do this procedure and stopped!

    3- can an atrophied diaphragm recover?

    4-can diaphragm muscle be replaced safely, without a life of medications to prevent the body from devouring it? Dr. Kaufman claims diaphragm muscle repair-, I gotta know a lot more about that

    5- Doctor follow up. some on this blog claim not good. the man with the infection who almost died that blogs on here? He says he didnt get much support after surgery i dont know, kinda scary.

    6- Big question mark. Hospitals, great surgeons used to do this procedure and gave up. Now one man, a plastic surgeon, has it figured out, and ( maybe so). But for God’s sake, I wanna hear more positive feedback from more people. I know my self, if it worked for me, I’d wanna tell the whole world and blog away about the miracle of it all !!!

    7- maybe hope for those with a pinched nerve that needs remedy, may hope for those with a diaphragm that is about a year afflicted. But what is the realistic hope, for someone like me, that realistically had his diaphragm most likely demolished from an ice slushing for a long long robotic surgery, and a diaphragm that has atrophied for 6 years?

    Note- I am not being intentionally negative. God I hope there is hope. i find it to be imperative to know the odds of all this!

    • catpowered Says:

      I’m the guy who about bit it. My wife and I were talking this em evening. I’m fighting a cold right now. She agrees I was better before the surgery than I am now after. Can’t hardly walk some days. Pinched nerves in the lumbar from the imbalance now if the left side diaphragm pulling with each breath. Since the right side is paralyzed this is a complication some get. My last sniff test shows it clearly. Three herniations in the lumbar, five total. I have left over damaged nerve issues from the infection as well. Not much to do there. Certain meds help but not much.

      But understand that any surgery has its risks. Read here and you’ll be amazed at how it is we have all become friends.

    • Terry Selb Says:

      You raise an interesting question as to “how rare “this problem is. I think the mere fact that everyone on this blog certainly have shared almost identical experiences in each individuals quest for knowledge on this condition has been met with frustration and a sense of “am I the only one” with this problem”, says it all.
      I appreciate now, more than ever, why my pulmonologist, with 42 years experience entered the examination room, reviewed my test results and muttered out loud “This is extremely odd”. It is no coincidences that, when each of us crawled through the internet looking for ANY meaningful information on this problem the results was, and remain, extremely scarce.
      As far as I can tell, after exhausting every resource I have found, there is NO statistical data to support the notion that this condition can only be characterized as extremely rare. As mentioned previously, there are a handful of medical research papers that even addressed the topic. This is mere speculation but the reason for this is two-fold: the first is that research costs money and no one is interested in putting money into a rare medical issue that has no scientifically accepted medical treatment. The second is simply raw numbers. In other words, the raw number of people with this problem is so low that it is statistically insignificant.
      Lastly, I have noted with shock that the vast majority of victims of this disorder have acquired it as a result of some other medical procedure. Its’ not a “side effect” of neck surgery or heart surgery or whatever. I don’t think a phrenic nerve magically becomes short circuited during invasive surgery. Clearly it is a direct result of something the surgeon in charge actually did during the surgery. Doctors tend to stick together and I don’t think anyone in the medical/research community is real anxious to explore exactly the exact cause of this condition while in surgery. This is just a theory.

      • catpowered Says:

        My pulmonologist in Bloomington Indiana in September 2012 once I was diagnosed told me he had seen hundreds of cases. He was in his 40s. Worked as a doctor in the Air Force and eventually worked his way into a practice at Premier health in Bloomington Indiana. I still think it’s pretty doggone rare though.

      • Dee Says:

        never had any surgery to cause my paralyzed diaphragm ….I can only guess that mine was caused due to a car wreck many years before We will never know… plan to get a sniff test in the next couple of months.. will report to the group as soon as I know..

      • Joan Marven Says:

        Hi Terry, I’m impressed with your letter….I agree with what you say about “almost always’ a result of a surgeons work…as is said they always stick together, I received a ‘damaged’!! phrenic nerve after removal of my thyroid, almost three years ago, the specialist, just give it 18 months to 2 years to heal…………….left lung, I try to be positive ‘I’m not as bad as a lot of the folks on this blog, but have a CONSTANT nagging in my brain that NEVER lets up….I am a Canadian and our medical would never cover the cost of Dr K and staff, so I’ve had no support with my health, I think because they have no idea what to do…..

  173. John2016 Says:

    Hi catpowered,
    I realize you have went through a lot. I have read each and every blog, before blogging myself. I do realize the risks of surgery. I opted for a robotic heart valve repair, gambled and lost! Had it fixed with a traditional second surgery to replace. I was convinced the robotic repair was the right way to go, and that I’d be fine. Problem is, the surgeon never really explained any risks. He never told me of how my heart and brain freeze for so long would affect me. he never mentioned the insulation issues that the probes have been prone to have, and have burnt lots of peoples nerves. Hey, maybe he didn’t know.what I’m saying is, yes, surgeries have risks and complications. But i forever moving forward, wanna know all the details before deciding.

  174. John2016 Says:

    why did other hospitals once do phrenic nerve splicing and decide to stop?
    There are enough clients around for it.
    Someone posted about how rare the condition is.
    I dont believe it to be that rare at all, can happen for so many different reasons too

  175. John2016 Says:

    I wish those that are helped, if plenty in number, will come forward

    • Steve Crozier Says:

      I wish too, but as someone else has pointed out here, they are not likely to search out a “support group” like this.

      • Jill Says:

        My phrenic nerve was damaged on 12/21/2011 with a botched ablation for afib. My life has never been the same. I went through the phrenic nerve graft surgery in the summer of 2012. Dr Kaufman is wonderful and it helped me marginally. My phrenic nerve was adhered to my pulmonary vein. Getting that freed up allowed me to bring up phlegm so at least I no longer get pnuemonia. But, I had a chest x-ray a recent as this week and I still have the elevated diaphragm and my breathing capacity is still very low.. althogh I plow through things as best as I can. I would say my surgery was a very small success but far from a complete success. Iam glad I went through it and I still hope for he best.

      • Judy Says:

        Thank you Jill for posting your story.

      • catpowered Says:

        Steve please contact me directly at catpowered@comcast.net or 8128871434.

  176. Brenda Jordan Says:

    When I researched the diaphragm
    Pacer, the site stated that you had to have a normally functioning phrenic nerve for it to work. Also you would not want the type with wires/box outside the body because the risk of infection is much greater. It is normally used for people with paralysis (actor Christopher Reeve). It is thought that he may have had an infection from His Diaphragm Pacer..
    Just putting more info out there for everyone.
    If any of my information is flawed, please let
    me know.

    • catpowered Says:

      I still await my reply from asking for more information about the pacemaker. It’s been a few months so I’m guessing I won’t hear anything after a couple requests. When I had my EMG / NCS done by Dr. Brown the last thing I had done was put a needle between my ribs into my diaphragm. They sent shocks for my neck trying to pick up any communication in the diaphragm which they did not find any and then they sent electric current into the diaphragm and tried to pick it up current in other areas which they also did not. They also did not detect any movement whatsoever of the diaphragm when putting a current into it. I’m still scratching my head as to why I continued to be a candidate but hindsight is 2020. I think I just wanted the surgery to work so bad that I’d do anything. And I about lost my life.

  177. John2016 Says:

    About phrenic nerve rarity.
    probably, its not so rare at all. Its overlooked and denied.
    Mine isn’t documented from surgery, yet read about heart surgery complications. this often happens. The phrenic nerve is also delicate, a chiropractic manuver can cause the affliction. So i agree, a lot of ignorance to the subject yes, but soooo many people walking around with one sided paralyzed diaphragm, and dont even know it, or know something a little wrong, but dont know what it is. Like me.
    I went to local pulmonologist the first years after surgery, they were ignorant to the entire thing, and i walked around for 6 years thinking I just needed to get over the hump

  178. John2016 Says:

    some level of proof !
    other hospitals have tried to splice phrenic nerves. they stopped doing it.
    I am personally really concerned,
    people( myself included) get blinded by ambition
    This doctor has the secret sauce? no one else. just him.
    hmmmmm.
    gotta call it as its unraveling

    • David Stuart Says:

      It’s not my blog but bringing such negativity is not helping everyone. You’ve already expressed your skepticism, are you just trying to convince others now? The fact is is that they’re have been proven results from Dr. Kaufman. Maybe it’s not for you. I personally already have issues with pessimism but I don’t bring that here. I believe this blog has been for the most part optimistic but realistic. You don’t have to encourage people to go through with surgery but you seem more about creating doubt. I am personally scheduled to attempt to restore function with Dr Kaufman. In my particular case, it’s not realistic that I’ll get function back, but there is a chance. I’m already nervous and worried it won’t work but am trying to maintain a positive feeling about it. Sorry to everyone else here, I’ll monitor from afar but I can not be an active participant here anymore. I’m trying to keep positive vibes and it’s just not happening here anymore. Good luck everyone. If anyone has any questions post appointment for me, you can email me stuman28@gmail.com . if surgery does happen it’ll be March 18…God willing. I’ll still communicate on here but only pertaining to symptoms and the condition, nothing Dr Kaufman related.

      • David Stuart Says:

        I’m a stickler for proper grammar, I have to correct myself, that should read “THERE have been proven results from Dr Kaufman.”

      • Judy Says:

        I agree with David. I am also scheduled for surgery on March 11th. Again, I have my own fears as I have had for many spine surgeries. It may be that I wake up the same as when I went to sleep. I do need to keep positive as well. DR Kaufman gave me a 70-80% chance of success if he can do the procedure. I may have too much scar tissue for him to reach the phrenic nerve. I thank him for trying . I appreciate all he has done to help this small population.

      • catpowered Says:

        I hear you loud and clear David. People do this out of the hope there is something better than what they’re going through. Some of us that I’ve had negative results or complications I should say have the right to question what we’ve done. The question that I not even knowing you will ask you to ask the doctor is “what do you consider success?” If his answer or his nurses answer is “if you feel better” then please ask “do you consider the diaphragm moving again success or is simply feeling better a success?” The doctor has skewed his success rate is the statement I am making. The one thing that I learned that was loud and clear is with the proper physical therapist understanding your condition he would be surprised at the improvement one can get by doing the proper physical therapy. If you read back and find some of my posts you’ll find some negativity of course because it was a complete negative experience for me. Which also see where I said I would do it again because it was a hope for me. Absolutely wish you and anyone else who wants to take the leap of faith because that’s what Dr. Kaufman told to me was a leap of faith I wish you the best of luck and I pray that everything goes great and you have a super experience and great results.

      • David Stuart Says:

        Cat, you absolutely have the right to question it. I’m not saying that. It’s good to know your experience. You have actually had this procedure done though. You aren’t knocking anyone for wanting to do it and you rightfully have your skepticism because of your bad experience. You’ve even said you’d probably do it again if I’m not mistaken. Despite your bad experience you still put a semi-positive spin on things and I appreciate that.

      • Terry Selb Says:

        Ok, I’ll jump in one last time on this particular topic (Dr. Kaufman) and then leave it alone.
        When I first was diagnosed with this condition 7 months ago I did what most of us do: hit the Google search button. The FIRST thing that appeared was Dr. Kaufman’s testimonial; video from “David”. It speaks for itself. But it filled my heart with hope. “My God!” I thought to myself,” this guy is only 30 minutes drive from my house! I was literally ready to grab the phone. I showed it to my family and they were extremely excited. My son (who is 31) said “Dad, call this guy right away”.
        Then I spoke to my personal physician who ALSO practices at both Cedars Sinai AND UCLA Hospital. His immediate reaction was, “I have never heard of this Doctor or this procedure”. He then sent me back to my pulmonologist (with 44 years experience in Beverly Hills and West Hollywood)who ALSO practices in the same Hospitals and he was the one who said to “Why the h*** would you go to a plastic surgeon for nerve grafting? “ Good question I thought.
        Then I found this Blog which was (and remains) a godsend for me.
        To make a long story short, as stated in my previous posts, ( thanks in no small part to Steve Crozier’s research tips at the outset of this blog) after an exhaustive search of clinical studies, etc, I am unable to find one single piece of scientific information to support this procedure.
        Then I began noticing, that whenever I googled anything pertaining to lung nerve damage I noticed that Dr Kaufman and “Davids” story ALWAYS pops up first. Next I noticed multiple google “paid for” ads that he runs regularly. Look folks, this doesn’t happen by accident. This is the result of professional search engine writers who know and understand how to make YOUR name pop up first.
        To those on this cite that don’t want their bubbles of hope burst, I understand and get that very clearly. But by the same token, is it fair or even morally right for Dr. Kaufman to raise MY hopes with David’s story? Is it reasonable to make claims on his website of “cures” with the TOTAL absence of scientifically observable cure rates? Is it fair to make claims intending to give me a sense of reasonable hope and then to experience the corresponding sense of disappointment when the facts become clear? A video testimonial can be truthful but also misleading.
        I know there are those here who are going ahead with this procedure. I am not criticizing your decision or making a judgment about it.
        One last point: Yesterday, I re-visited Dr Kaufmans website for his so-called “Institute for Advanced Reconstruction (which also promotes hair transplants) I hjave learned that on his VERY own website, he now cites in blaring loud language that “Dr Kaufman shares News on Phrenic Nerve Repair”. When I click on it, guess where it takes you? Right here, folks, to this very blog.
        I have found the originator of this blog to be exceedingly open minded and very straightforward about his own personal experience with this procedure. I do not in any way mean to suggest that Mr. Crozier (who I admire and respect) would knowingly become a promotional tool for Dr. Kaufman. But it really bothers me that Dr. Kaufman would, in a not very subtle way openly use this blog which is an excellent support mechanism as direct means of supporting his highly profitable clinics.

      • catpowered Says:

        Maybe this is why I cannot get any response out of his office via the emails and there haven’t been many or the couple phone calls that I’ve made in the fall and early winter. I’m not a better. He has actually came here or his staff has and this has been read. I would hope that they would ask for permission maybe to link this to their site? I guess if this is a public site they wouldn’t have to but seems as though maybe out of courtesy?

        One thing that I found interesting that he counted as a success out of my surgery was when I came out of recovery he had done a fluoroscopy after the surgery and compared it to the one they had done before surgery and my diaphragm was down about one intercoastal space. But guess what. When you’re on a ventilator for about 2 1/2 hours the natural thing that is happening with the air being forced into your lungs is to push the diaphragm that is paralyzed down. I have had sniff tests done since that clearly show it as high as it is ever been. I had three surgeries done in other areas of my body in the year prior to my diaphragm surgery. After each one of those my breathing was actually better for about a week and then it went back to where it was to begin with. That’s the diaphragm migrating back up to where it was.

        Probably the one thing that bothered me more than anything was when I made contact with his office in regards to my brother. He was diagnosed with the exact same condition I have last April. I thought that Dr. K would be all over this trying to figure out a connection to a cause. The only thing he stated was he is unaware of any connection and encouraged me to have my brother make contact with him to schedule a visit. My brother has high doubt that will happen. He has continued with his job done some physical therapy and feels more improvement that what I felt believe it or not. We both live with this and cross our fingers and pray that it’s not something that is hereditary that our children may have to deal with.

        I do applaud the doctor for making efforts in a field that no one is making any attempts in but I really really am disgusted with what the success rate is that he claims.

        How many people on here that have had the surgery have a confirmed sniff test that clearly shows the diaphragm in motion? Of the five people I personally have talk to only one has movement and his surgery was done with in months of the onset. Months of the onset remember that. That is the range of time that any trained professional pulmonologist asks you to wait. If you have an obvious injury I think it is well worth your while to attack it very soon and fix that area before the nerve completely dies and atrophy sets in. After that I think you are playing the lottery.

        Call Mary Massery and Chicago find one of her disciples that are somewhere within reach of where you are and get a trained physical therapist and come up with a regimen. Learn the techniques to expand the thoracic cage train the muscles in your region of injury learn the huff routine learn the voice commands learn how singing can improve your breathing and boy I’m a terrible singer by the way but there are so many things you can do to improve your situation.

      • Steve Crozier Says:

        catpowered, I had a routine sniff test, ordered by my pulmonologist about 10 months post-nerve repair sugery (as I recall). I expected nothing, but the radiologist said, “your left hemi-diaphragm definitely has some motion.” After reporting this to Dr Kaufman’s office, I flew to NJ for a follow-up EMG, which showed that in fact my phrenic nerve was operating at 100%.

        Clinically, I am but slightly improved. However, I have to admit that I haven’t been a very compliant patient in terms of rehab. So I think that’s on me. If Dr Kaufman wants to call me a success, I think that’s probably fair. But if someone wants to say that I’m not much clinically improved, I think that’s fair too.

      • catpowered Says:

        That’s great Steve. I hope there are more people that have at least your success and even more.

      • catpowered Says:

        And by the way you would be the second person that has confirmed movement that I know.

      • Judy Says:

        I have to say when I spoke with Dr Kaufman last year and was set to have surgery here in Los Angeles, he did advise me to find a good therapist and go to therapy for 6 months and if I had no improvement then to contact him again. That is when I had to get off his schedule as I could not find anyone to do the EMG of my diaphragm and I had a sniff test where the doc said my diaphragm was not paralyzed.
        This year I have had 2 phone calls from him. In both of them , he told me if I was ok with this condition and it was not interfering in daily life too much to not go for the surgery. I had to tell him I really wanted to have the surgery.
        I never did go to an official diaphragm rehab person as they were extremely expensive and my pulmonologist was in charge of pulmonary medicine as well as rehab at my hospital . He told me by continuing to hike I was doing more rehab than I would get in an official rehab place. He may have been wrong with that, but I believed him. This summer I took care of my spine with 3 major spine surgeries , after I was pretty recovered I contacted DRKaufman’s office again.

      • Steve Crozier Says:

        Terry, I can’t find the link, “Dr Kaufman Shares News On Phrenic Nerve Repair,” that you say links to this blog. Can you give me a URL? I’m just curious to see what context it’s in. I believe I told Dr Kaufman’s office about this article a while back, but we’ve never discussed it beyond that.

    • Terry Selb Says:

      Sure, Steve: you can find the link right here:
      http://www.advancedreconstruction.com/news-from-dr-matthew-kaufman/

      • catpowered Says:

        Yes Steve it’s your blog. I appreciate a place to give the pros and the cons. He actually wrote your name in his dialogue before presenting the link. Maybe he owes you a nickel for every clinic? OK I’m just getting now. Good luck to anyone and everyone who want to move forward. Please don’t be discouraged just proceed with caution is all I stay. I’ve stated Moran than once that I would probably do it again. Who knows maybe I would be the one that could brag given a second chance.

      • Steve Crozier Says:

        Thanks. Yes, I think I remember seeing that now, shortly after I told Dr Kaufman’s office about the article.

        FWIW, I think his linking to the article is perfectly acceptable. And no, I’m not getting any nickels. :-)

  179. Steve Crozier Says:

    Since comments on this article have taken an interesting turn of late, I want to jump in and make a couple of points, since I wrote the original article.

    First off, I am perfectly fine with all comments, positive or negative regarding the condition, the procedure, and the doctor. I will monitor and comment on poor reasoning or logic, but will probably not censor anyone who is civil.

    Secondly, and this is purely my personal take…bad things happen to good people. No one “owes” us a cure. If we go to a doctor, we should go with our eyes open. Doctors make mistakes. Things don’t always work out as we hope. General whining about these issues annoy me. I probably won’t censor you, but know that you’ve annoyed me. :-)

    Thirdly, if you read my original article, this is not a support group blog. Over time, it has become a source of support for many of us, purely because we chose to respond and care about each other. *You* turned it into a support group; I didn’t create it that way. Which is only to say, please don’t turn this into an us against them kinda thing.

    Fourth, to the critics of Dr Kaufman and the procedure(s), I welcome your thoughts and insight. I have no connection to Dr Kaufman save for being a patient. I think it’s fair game to think critically about this condition and the procedures that are being offered to fix it.

    Finally, to the many who have had surgery or are contemplating it, best wishes to you all. I’m honored that you’ve chosen to air your thoughts and concerns here.

  180. john2016site Says:

    Wow.
    Thanks for honesty Steve, Catpowered, and Terry.
    Makes sense that this blog should be about honest results, if that gives support, then so be it. If people get insulted by honesty, and it kills their hope, I feel sorry, hope is good, but isn’t truth about things better? Why waste effort and time, and possibly your life on a surgery that didn’t work, on the hope that it may work based off of little evidence? If I wanted confirmation that my phrenic nerve was completely restored, I would want to go back to someone else to do the confirmation, not the same doc that did the procedure. Then that is only half the battle. What about the diaphragm?? Best chances seem to be with someone whos issue was well under a year, yet they tell you after surgeries, or problems with diaphragm, wait a year or longer before seeking medical help. Seems a catch 22.
    I am aware that the good Doctors is aware of this page. Maybe they are aware of me. maybe they see me as pessimistic and refuse to get back to me now? I dont know, but I havent heard back from their office yet, and have been awaiting. I wanted to be scheduled for nerve testing, as it full fills forward movement in my quest for knowledge, and am willing to go at least that far.

    • Judy Says:

      John I am a little confused. You stated to have your nerve tested somewhere other than the surgeon’s office. Yet you are waiting for a reply from them about nerve testing. Did you have surgery ? You must also remember those that had good results have no need to look for some type of forum on line. They just go on with their lives. I don’t think DrK would continue to offer these surgeries if he was not getting any success.

      • Dee Says:

        Thanks JUDY!! When someone has open heart surgery is there any guarantee of fixing the problem. when my wife has had breast cancer surgery TWICE is there any guarantee that it wont return? NO We have this surgery because we all have HOPE that things will improve… maybe not 100% but any improvement is welcome.. We hope, dream, pray that our way of life will get better and personally I chose to take the risk as my wife has done ..

      • Judy Says:

        I agree with you totally Dee and thanks for posting that. I have another rare disease called panhypopitutarism. My pituitary gland at the base of the brain stopped working. At the time, I knew something was wrong, I went to so many endocrinologists in Ga and they all told me I was normal. I kept searching putting my symptoms in and found this doctor who was in all the articles and research. I flew out to Ca to see him, One of the best decisions of my life. Since then we moved back to Ca, he has a weekly clinic for people with these rare conditions. People fly in from all over the world to see him. I now work at his Tuesday night clinic. I am on a few facebook groups for people with these rare endocrine issues. I never see the patients who came , got treated some have a pit tumor. Those patients just get it removed and end up being ok most of the time. The only patients I see on line are those who haven’t come to Ca yet or those who have a second tumor or rare like me that don’t even have a tumor. I know there are so many others out there that are fine.

  181. john2016site Says:

    I think some truths are coming out

  182. john2016site Says:

    No Judy,
    please dont get confused. I have not had nerve tested in the respect that is done at the clinic. I mentioned that I would go as far as having nerve tested by doc. Kaufman. Maybe it could give me further answers.
    I had a sniff test done, and breathing tests done. I have a confirmed elevated diaphragm .
    Sorry you have other problems.
    As I addressed already, and will re address, you say those who this procedure helped don’t bother blogging.
    In response to that I say:
    Those that this procedure has helped,( takes1 to 2 to 3 years to help) Right? The phrenic nerve has to grow back, and take effect. So there is a waiting period for help. These patients dont just move on their merry way. They would be waiting for years, searching for answers, just as someone it hasn’t helped. So I would think that these people would be blogging, since the help is not instant. Yet, where are they?
    where are all the people in the waiting period to see if this procedure works? They are not blogging. There would be at least dozens, or several.
    But there is not this group of people. There is one man who claims he is better. One. Maybe the only reason he is better, is he caught the condition very quick, and it was only a pinch on nerve that was relieved.I dont know
    What about the people who have had a diaphragm issue for several years, like most here. Have any of them gotten better truely?? They have some degree of improvement, called a success because of breathing rehab programs. But are they ever truely healed with full function to lung and diaphragm? Any better then what a plication procedure would offer?
    Its not calling it for anything else then what it is.
    Where are these people.
    Someone woud say, documenting progress, ohh getting better, and better, and better, wow I feel great now! where are these people.
    Its extremely concerning

    • catpowered Says:

      Dr K told me ten months should be the period after surgery I see a return of diaphragm function. One millimeter per day. 30

  183. catpowered Says:

    30 centimeters to grow.

  184. john2016site Says:

    plus additional time for regrowth and movement of diaphragm? other then just nerve growth?
    Either way, I believe if there was a lot of success, people would blog there progress to some degree. seems to me, a large degree of disappointment?
    I really wish this was, is the answer. it seems harder to believe with each day of research.
    I hope, and look for the answer that shows me I am wrong, as I want to be well

  185. john2016site Says:

    Does anyone else feel the way I do ?
    You want to be whole and to be fixed properly with all parts in tact.
    You would love for this procedure to be the answer.
    You suspect its not the answer ( based off of lack of evidence), and you definitely don’t want to be someones guinea pig, and even worse you don’t wanna feel that you became a victim of desperation for someones profit. People in our position are susceptible to hoping and reaching. we are a little bit desperate, and will grab on to anything that provides hope.
    should I feel guilty in pointing this out in anyone’s eyes? Or is presenting something in a light that may be deceptive to a hopeful person where the guilt lies.
    Show me the cases of true success. Then my mind will begin to change. If they are out there. They will come forward.
    People can be reached.
    Where are the testimonials?
    Should be able to stack them up and compare, and until that point, shouldn’t this procedure and the thought of doing it be held under a microscope?

  186. john2016site Says:

    I have been a victim of deception by a surgeon before. They will consider and value their own desires and needs in large part before yours.
    Its not a paranoid state of mind, its a harsh reality. I have been scolded by a surgeon for wanting to fix his faulty heart valve repair. telling me he knew no one that would change or fix my valve after his robotic repair. He told me to stop running marathons when I told him that jogging a mile on a treadmill caused me to cough up blood everywhere. My valve was fixed poorly, he wanted me to live with it. it is my belief that he was protecting his track record for success. He worked at a major hospital. It has been validated by another professional that this was probably the case. I went and got tested at another hospital for exercised induced pulmonary edema, and they said they felt I shouldn’t fix the problem. I was perplexed. I didn’t realize that they were going to hire this same surgeon.
    I went to another hospital and was told the truth by a very honest professional. A week or so later, i had a second heart surgery, and the problem resolved. I was lied to and deceived. I trust no one that cannot make clear, concise perfect sense, backed up by solid proof.
    So so sorry if this is not what people wanna hear. I do apoligize if this diminished hope, or burst someones bubble. I have been on the fence with this decision. i love to be hopeful. I owe it to myself to keep eyes wide open and be truthful as possible.

  187. john2016site Says:

    Just my perspective of coarse. Someone else may feel entirely different. I invite the conversation. Please, please, if this procedure is proven to work in any ones eyes. Please say so

  188. john2016site Says:

    A little more research also reveals that with time, a diaphragm that doesn’t work, continues to rise, continues to atrophy, continues to cause a squished up lung, continues to encourage fluid, atelectasis, scarring, infection. All scary.
    As I make this journey, discovering what has gone on with my body, and where it is going, it seems the faster a fix the better. I’m wondering, even with some phrenic rejuvenation and regrowth, it takes another year plus. Then the diaphragm, to hopefully work, even more time( if it ever works well again at all)
    i have been putting off plication, with the hope that the phrenic nerve program is the answer. Its beginning to seem risky to put off any more. A surgeon recently told me, dont put it off too much longer. I am really beginning to understand why.
    Seems Phrenic nerve regrowth, and the outside chance of success, wastes valuable time that could be further damaging a lung prone to fluid and infection.
    if this blog is a place to share info, shouldn’t this thought be shared.
    Do the research studies that are proven for plication. Most people get halfway better at least. Some get 100 percent better over long term studies( 5 years plus remaining that way)
    I too had a stigma with the idea of plication. I wanted to be whole instead.
    I now believe that may be a dream, and realistic improvements may be better.
    If anyone knows of bad things that have actually happened from plication, please share. I for one would love to hear it. The research studies do dictate otherwise though, and I cant help but think its the better overall choice.

    • Steve Crozier Says:

      Again, I’m not a doctor….but I don’t see how one could have full recovery with plication which, by definition, renders one’s diaphragm useless.

      • catpowered Says:

        I would have to dig it again but from what I remember reading anywhere from 10 to 35% gain in a PFT. 10% maybe wouldn’t make it worth it but 35 would. I think it all depends on many factors.

    • catpowered Says:

      I have seen documentation where in bigger people like me plication has risks. Infection and healing are tougher. Sometimes recommended to try it with gastric bypass’s or lap band. My problem with that is I know four people and two of those died within the first year of complications. That’s not a risk I’d like to take either.

      • Terry Selb Says:

        I find it interesting that the plication topic has risen because I have been doing some additional reading on this which has led to some interesting findings. I think the biggest fear is that plication is a one-way street;no chance of spontaneous recovery or controversial nerve repair (lets stay off that hot button for a minute).
        My reading has revealed that plication is a tried and true surgery with well published, well researched and significant scientific to support the following notions:
        1.It is sure to relieve all boating and related internal organ “re-shuffling” issues that most people suffer from.
        2. It always results in a SLIGHT improvement in breathing (not much more that 10% at most)
        3. Its not for everyone. Meaning that there is a huge disparity in how this condition affects each person. The American Thoracic Society Dyspnea Grading Method has a ranking of 1-5 on the severity of affects on a person afflicted with this problem. Depending upon how much this problem affects your quality of life, the greater the likelihood that this operation would benefit you.
        In summary, every person on this blog, without exception is trying to cope with this problem in their own way. Some have significant other complications that would affect their decision to have this purely elective surgery.
        I would be interested in hearing from those who have had this procedure. The main issue I see is that it is major surgery involving a 7 to 10 day hospital stay and at least a 6 week recovery. It’s a big deal.
        For myself. I have d3ecided to defer on this for 2 years in the hopes of a possible spontaneous recovery (this is well documented although rare). If that doesn’t happen, I will probably opt for the surgery primarily because its outcome is certain in terms of relieving all bloating (which for me is horrific at times) and an even SLIGHT improvement is better than none. And most importantly, it significantly reduces the dreaded pneumonia issues.

  189. john2016site Says:

    Well. I have a few research studies that are out there, and I could provide the links. One is even grafted. Long term , and they measure spironmetry. You know breathing out. One second test, and full blown test. The improvements are staggeringly good for a lot of people. Not just a cure for bloating.
    One person in the study improved in total breathing out measured to over 100 percent of what is considered healthy 100 percent. Most people decreased their breathing deficit by at least half, on both one second and full blown out on spirometry ( I don’t have the values and name in front of me).
    I will follow up

  190. john2016site Says:

    I think the improvements are under estimated. If your diaphragm is sown down it allows the Ling to expand. How fast it can contract without a diaphragm, is pending upon auxiliary muscles, conditioning, elasticity of the lung, and any damage incurred to bronchi Olesya etc. Fluid, infection, scarring,etc

  191. John2016 Says:

    Long-term results of diaphragmatic plication in adults with unilateral diaphragm paralysis _ Journal of Cardiothoracic Surgery _ Full Text.htm

  192. john2016site Says:

    FEV- forced expiratory volume( one second)
    FVC- forced vital capacity( total air blown out after full inspiration)
    These increase dramatically after plication

    With 12 patients long term- the average increase percentage for FEV-65.3% before plication- 82.8% after
    FVC-56.7 before plication- 79% after

    this is long term( after 5 years)- these values mean a lot

    • Steve Crozier Says:

      …and one patient died from complications of the surgery, it should be noted.

      • catpowered Says:

        I am not a doctor so please don’t listen to me but I do recall somewhere in the mix reading about a plication study where the morbidity rate was between 10 and 15% in one study. I can also say in a conversation with my pulmonologist my first one I should say he stated plication was something that he only recommended if your symptoms were extreme and you should tolerate if they were moderate. My other pulmonologist stated plication has risks and if I want to discuss it we can do so.

  193. John2016 Says:

    Laparoscopic diaphragmatic plication for diaphragmatic paralysis and eventration: an objective evaluation of short-term and midterm results.
    research study on 25 patients. very positive results as well

  194. John2016 Says:

    Terry,
    i was wondering where you got the statistic that plication only helped breathing by 10% at most.
    I could only find a few studies, but they seemed to show better then 10%.
    They led me to believe whereever your level % wise, plication would tend to get you halfway back, some more some less.
    If you have other resources to draw from, i’m curious to read

    • Steve Crozier Says:

      John, it’s probably good to be aware that all of these studies have pretty small sample sizes and, more importantly, the cases analyzed have been chosen by the authors for some reason. As one of the meta-analyses stated:

      “All reports included in this review are observational studies (one cohort study and the remainder being case series); therefore, the risk of selection, information and publication biases are high and conclusions should be implemented with caution.”

  195. Steve Crozier Says:

    Thanks to John for posting some good info on plication, which I think we’ve all been told, is an alternative to nerve repair. I’ve had a very negative view of plication, because it means that you close down the pathway of nerve repair in the future. The articles John reports, however, do show that–at least in some patients–plication does offer significant help.

    I do wonder how much selection bias there may be in these articles, though. Even the meta-analysis I found only reported on something like 130 cases. Surely there have been an order of magnitude or two more cases than that.

    The article(s) note that a main benefit was reducing/eliminating collapsed lungs and similar issues. I’ll remind y’all that my wife (a doctor) had the same concerns for me, and my pulmonologist gave me a rigged-up device to blow air into my lungs to avoid the problem…possibly a low-tech, very low cost way to stave off these same issues.

    (And repeating my caveat that I’m not a doctor, and my wife is not my doctor, nor yours. :-)

    • Terry Selb Says:

      I will try and dig up the medical journal article I was referring to in an earlier post regarding plication results. I was surprised to learn that plication is a procedure that goes back over the past 100 years and has long been considered the only viable procedure to provide any relief to some of the problems this issue causes.
      I am wondering Steve if this “rigged up device” is something that can be used by others or is this just a situation where your wife’s medical background makes this possible for you. Does your lung actually fill with air? How often do you do this?
      One last thing…I developed a “wheeze” almost as soon as my paralysis set in. And this wheeze just seems to always be present. Has anyone else experienced this? Just wondering.

      • Steve Crozier Says:

        Terry, if you search this page for “ambu”, you’ll find some of my posts about this “rigged up device.” It should be usable by anyone. I would show the pics to your pulmonologist…I’m sure he’d be happy to make you one.

        https://www.flickr.com/gp/118852032@N04/7hf9M5

      • Steve Crozier Says:

        Terry, I have a wheeze on occasion, but I have chalked it up to asthma, which I’ve had all my life.

      • catpowered Says:

        My physical therapist taught me a technique called the huff technique. It’s basically sitting on a chair at the end of the chair, legs in front of you leaning slightly forward you take a deep breath and with your arms bent at the elbow’s to your side you pop them in to your rib cage flapping kind of like a bird flapping wings. Hitting yourself boom boom boom as you exhale vigorously. You repeat this and what it does is it takes is the air that you have in hailed deeply and it forces it out of the lungs clearing the bronchial. If you do this a few times you will start to cough pretty bad and that’s actually a good thing. It has saved me on many occasions. It is also helped with the wheezing that I get on occasion. Just some food for thought.

      • Brenda Jordan Says:

        I have left side paralysis. Before my diagnosis, I noticed that when I would lay on my right side I would wheeze. I thought I was getting bronchitis. 9 months after my diagnosis I still have the wheezing issue. I wheeze a tiny bit when I lie on my back but I must be more fortunate than some; I can lie on my back for a while when using two pillows. However, the most comfortable sleeping position is lying on my left side. I guess this is all a part of diaphragm paralysis.

      • Terry Selb Says:

        I always find bits of information like yours, Brenda, quite interesting. Sleeping has presented a whole new set of problems. My left side is also paralyzed and I also find sleeping on my left side most comfortable. In fact, this is the ONLY position that provides me with the highest level of feeling “normal”. The problem of course, is that I move a little during the night and that frequently results in me waking up feeling uncomfortable. As for lying on my back, I will try your two pillow technique because right now I cannot lay comfortably on my stomach or my back. Anyway, i feel like i am complaining….good luck to you

      • Brenda Jordan Says:

        Terry
        This condition has certainly affected my quality of sleep, which I am sure is true for everyone here. To have only 1 position in which you can sleep comfortably is tough but I am thankful for that one.
        Best wishes to you.

  196. terry selb Says:

    I hear ya, Brenda. Same to you.

  197. Dee Says:

    My condition apparently was never so severe to keep me from sleeping but sometime as I lay on my back I had shortness of breath..since surgery none of those issues.. At All. I finally had the surgery in JUNE OF 14. I did so after talking to a prior patient named Gordon that lives in Charlotte. He is NOT on this blog. He told me his breathing got so bad he would pass out while kayaking on Lake Norman. After sugery with Dr K his breathing improved he felt 90%.I will see if he will join the conversation.. but he is one of many that are NOT on this blog…

    • Judy Says:

      Thank you Dee for mentioning another success story. It has been hard to read all the negative comments these last few weeks, I am leaving Ca for Nj in 2 weeks, surgery on the 11th of March . It has given me lots of doubts that I am spending so much money I do not have. But I guess no matter what I am the kind that has to try everything. I don’t quit easily. This summer when I had 3 major spine surgeries, lots of doctors didn’t want me to do it. I had already had so many. But I was left looking like I was 95, all hunched over and needing a cane, heading to a wheelchair. I had inflammation through my whole spine. It was progressively getting worse. My regular spine surgeon said it was too dangerous to do any surgery ever. Well I didn’t give up , found a surgeon willing to try even though he said it was very risky. Well a few months later and I am standing up straight, no more cane. It is still like a miracle.

      • Brenda Jordan Says:

        Judy
        I am very glad that you have had success with your spine surgeries. I know that was very painful and tough to get through.
        I wish you the very best of success with your upcoming surgery and I will be praying for you as you prepare for NJ & Dr Kaufman.
        As you feel up to it, please let us know how you are doing. Safe travels. God Bless you.

      • Judy Says:

        Thank you Brenda , I will be sure to keep everyone informed of my surgery and progress. thank you for your kind words

  198. john2016 Says:

    Methods

    Adult patients undergoing plication of the hemidiaphragm for lifestyle-limiting dyspnea secondary to unilateral diaphragm paralysis were assessed preoperatively, 6 month after surgery and then annually using the Medical Research Council dyspnea score, pulmonary spirometry, activities of daily living questionnaire, and a chest radiograph. Patients with at least 48 months of follow-up were included in this investigation.
    Results

    Forty-one patients underwent plication of the hemidiaphragm through video-assisted thoracoscopy (30) or thoracotomy (11). Mean follow-up was 57 ± 10 months. Mean forced vital capacity, forced expiratory volume at 1 second, functional residual capacity, and total lung capacity all improved by 19%, 23%, 21%, and 19% (p < 0.005), respectively, when measured 6 months after surgery, as were mean Medical Research Council dyspnea scores (p < 0.0001). These mean values remained constant over the follow-up period. Four patients did not show improvement in their Medical Research Council dyspnea scores nor functional status despite improvements in their pulmonary spirometry values. Two of these patients had a body mass index greater than 35 kg/m2 and 3 had documented unilateral diaphragm paralysis for at least 4 years before plication.
    Conclusions

    Plication of the hemidiaphragm produces improvement for the vast majority of patients in pulmonary spirometry, dyspnea, and functional status that endures over long-term follow-up. Patients who are morbidly obese or who have longstanding unilateral diaphragm paralysis may not realize the same benefits of plication.

  199. john2016 Says:

    a third positive study about plication short and long term
    adding up to about 100 people, mostly great result.
    I dont feel anyone should overlook it, Even though it is permanent

    • john2016site Says:

      Dee, I’d like to know more about the success of Gordon, who lives in Charlotte. Also, assuming he is on a blog, but not on this one, which blog is Gordon on?

      • Dee Says:

        Gordon is on NO BLOG I was getting acupuncture hoping to kick start my diaphragm and told the lady doing it about my situation and that I had contacted Dr Kaufman she knew of someone that had just received the surgery and gave me his name and # .. I will ask Gordon if he minds if I put that information on this blog..

    • Terry Selb Says:

      Just a quick response to the plication analysis : In my opinion a 19% improvement in breathing capacity is significant BUT….most people experience an improvement over time just because their “good” lung becomes more efficient.
      Having said that, I agree that plication is definitely the best option out there. However, I was told that it is a very major procedure that involves a 10-15 day hospital stay and a significant recovery time of 2 to 3 months just to get back to where you were before surgery. I was told that they go in “through” the stomach area and then wire it together. This was information conveyed to me by my pulmonologist. If its accurate, it sounds rough.

      • Judy Says:

        Terry I doubt plication is a 10-15 day hospital stay. I don’t think any insurance co would give you that many days to recover. I had major reconstructive spine surgery this summer and I got 4 days the last time, I left the hospital in horrible pain too. I think it can be done with a minimally invasive approach in some people. I have had my damage to my phrenic nerve since 2009 and my other lung never did take over for the damaged side. I am no expert, just what I think. I think a few years ago when I discussed this with my pulmonologist he said the improvement was between 10 and 20% gain in lung capacity. My right hemidiaphragm is not that elevated to I don’t think I would get very good results

      • Dee Says:

        never ever heard that the good lung becomes more effecient
        after 65 years have a problem believing that.

  200. Dee Says:

    Just went to my pulmonologist this week and my diaphragm is back down where it should be.. and my left lung has gone from 47% to 62%so…. that is the good news….We are waiting to do a sniff test to see if both diaphragms are working…. .. due to the fact that this test is an old test and there are few people qualified to read such a test I may be waiting a while…. He is going to check to see if anyone at Duke is qualified to do an EMG but he is very doubtful…. As he says the position of the diaphragm and the improvement in the breathing are two points in my favor… the sniff test would make things even better… so for those on the fence… YES in my opinion it is worth every risk you may have to take….

    • Judy Says:

      Great news for you Dee. I made all my plans for surgery and am flying out on Monday with surgery on Friday . My lung capacity for the last 3 years has been between 42 and 50%. Ok so now Tuesday I went to see my pulmonologist and found out my lung capacity has improved to 63%. It is the result of my spine surgery, I am no longer crooked and all bent forward. I know I would gladly accept more improvement, but do you think you would go through this if you started out at 63%?

      • Dee Says:

        I guess it depends on your quality of life. you are already back to where it took me and a year and half to get to…but if the surgery can get you closer to 100% as Gordon tells me it has for him then I would say go for it…the difference between my surgery and others(I think). is that when a previous surgeon’s mistake cuts the nerve it should be easier to find the problem… in my case the nerves were a “a salad bowl”when he went in as described to my wife after the surgery by Dr K . Probably my issue caused by a wreck many years earlier.. and over time the nerves broke down.. I may never be able to hike like I use to, or swim like I want to but rather than sit on my rear and go into depression I elected to have the surgery and hire a trainer and do what I can..If my wife can beat breast cancer twice I WILL BE DAMNED IF I AM GOING TO GIVE UP Good luck, God be with you….. I am sure you will make the right decision…

      • Judy Says:

        Thank you Dee. I feel bad, your poor wife had breast cancer twice. that is awful, I am so glad she fought and beat it twice. I am going to go for it. My back surgery really helped my breathing. I am glad, but surprised. It took 6 months of being straight to improve it. I , like you want to be able to hike more. I have been afraid to go up to any altitude. I stay local and with easy trails. I still get passed by everyone including small children. I used to run the trails before.
        Mine is in my chest so requiring some time in surgery. I spoke to DrKaufman again yesterday as I was having serious doubts and got sidelined by a ct DrK wanted and I sent to them a month ago. I just picked up the report on Monday. It said I had a new pericardial effusion, fluid built up around my heart. I have never had heart trouble and was freaking out. I somehow managed to see a cardiologist and get an echo and the repot says all fine and got it sent to DrK yesterday. I didn’t think I had enough time to do that. I was very lucky. I will keep everyone informed of what happens to me next Friday. Thank you for all the positive info you always provide. keep improving . Stay healthy to you and your wife.

      • Dee Says:

        Just spoke to Gordon in Charlotte and he continues to improve… he is very active on the lake kyaking and although his breathing is not back 100% he says 85 to 90% would be a close estimate.. He is very upbeat and he does not mind me calling him now and then for updates.. As he says we are all part of a very unique club.. Our prayers and love go out to you and keep us informed as how things turn out….
        by the way Gordon’s email is gordonsmith5252@gmail.com .If there are others that are on this blog that want to email him you are welcome to do so….

      • Judy Says:

        Thank you so much for Gordon’s email and yet another positive comment. I will email him when I get a chance. of course I left everything for the last minute and am flying out Monday.

      • Dee Says:

        now for my bad news.. sniff test done last week showed no movement when breathing by my diaphragm… so unless Dr K knows something I dont …. i

      • Judy Says:

        Dee I am so sorry about your sniff test. But please do remember it is so difficult to find someone to do them . My first one in Nov 2015, the doctor while doing it said your right side is paralyzed. Definitely. Then his report came out saying no sign of paralysis, just that both sides are weak. Ok that would mean I would not be a candidate for surgery. I went to a different radiologist and he said your right side is paralyzed. Ok , his report said the same thing He showed me the screen and I sure didn’t see any movement. I wonder also could we possibly have movement one day and not the next?
        Dr Kaufman did a sniff test when I was in the OR before any sedation. He saw some movement. I thought he was going to call off the surgery right there. He just said that was good, some of the muscle was not moving and another part was. It just showed him where the best position was to put in the wires for the pacemaker.
        I have had 4 sniff tests not including the one in the OR, they were all , except the last one in Dec, written so confusingly , no other doctor could interpret them.
        My point after all that is I will not put much weight on a sniff test.

        About me, I traveled home by plane, no problems. My oxygen sat has been about 96-98% Even when wallking around my house. I did buy a pulse finger thingy at Target before I left NJ. It was about $30. Now my 21 year old daughters is only 93%, it does not fluctuate, but stays there. I test everyone’s. I am finding the spirometer thing easier to do, but I am trying so much harder. We are actually supposed to use it 10 times per hour. I had been using it about 10 times per day.
        I still have not turned on the pacemaker. I only have 3 wires coming out of my body, kind of attached to a small plug. Not much at all, a lot easier than I thought it would be. just all the supplies for cleaning it . But I sure don’t want an infection.
        Dr Kaufman is coming to Ca to UCL in June so I will have an apt with him then. I am so fortunate that he comes here. He does want me to see my pulmonologist in the next few weeks just to make sure my lung it fully inflated and no signs of infection.
        Mu pulmonologist is still skeptical about the whole thing, but very interested. He has a patient with damage to both phrenic nerves and he will send her to DrK if he sees I have improved .
        At this point the only problem I have is trying not to use my right arm and just sitting around. Oh and my stomach does not get along with the antiobiotics. Only 4 pills left

  201. Andrew Caas Says:

    HI Gordon Smith, exactly what happened to i had guillin barrie ,i was not givivng the correct treatment at the time. but a doctor 3 beds down gad what o had yet she got 7 plamamaexchanges/ 12 ivivg courses. Were i got 1 5 day cours only. i was paralysed from ny head to my toe i went blind in my left bilateral phrenic nerve palsy but only my right side started to functon after 2 yrs intensive care as a result of my left side not coming i picked up M R S A /E COLI/ C DIFF/ I WAS TREATED WITH THE STRONGEST ANTIBIOTIC IN THE WORLD AT THE TIME BUT DESTROYED MY IMMUINE SYSTEM. I STILL WILL NEVER WRK AGAIN IAM ON HOME OXYGEN AND A LOT OF PAIN KILLERS STILL PLESASE IF YOU CANCONTAVT ME I AM FROM IRELAND.
    REGARDS
    aNDREW carass.

  202. Molly McCoy Jesberger Says:

    Hi all! Sorry I haven’t posted for awhile. I’ve checked in once in awhile, but I’m really trying to think positive right now and be patient in hopes that my phrenic nerve will kick in soon. I’m 3 1/2 months post op now and there hasn’t been much change. I’ve had a few setbacks kind of indirectly related to my surgery. I did something to my right shoulder (possibly rotator cuff) 2 weeks before my surgery and was unable to do anything about it during my recuperation. By the time I went to my Dr. about it, my shoulder had frozen..so I’ve been in pt for that for the last 2 months. I am making progress, but it’s slow, and it’s extremely painful to get it ‘unfrozen’! After surgery, I felt like there was a slight improvement in my breathing so my Dr ordered a nocturnal pulse ox and unfortunately there was no improvement in my oxygen levels dropping at night. In 3 minutes time, my levels dropped below 80, 60 times..and that was just 3 minutes! Needless to say, I’m still on my bipap at night..I’m still praying every day that my nerve will heal and my diaphragm will recover. I have no regrets for having had the surgery. We have to do everything we can, right? I do have a question for anyone that can answer it. Has anyone been to Colorado or any other high elevation place since acquiring this condition? I have a chance to go to Colorado(Breckenridge) in July and I’m so scared I won’t be able to handle it. I seem to remember someone saying that flying didn’t bother them. Has it bothered anyone? Thank you all so much..This page has helped me so much to not feel alone in all of this.

    • Steve Crozier Says:

      Molly, I went to about 10,800 feet altitude with this condition and noticed very little difficulty. I was very freaked out ahead of time, to the point of scoping out where the hospital was in this small town in Ecuador! It turned out to be pretty much a non-issue. Obviously, your results may be different.

      • Molly McCoy Jesberger Says:

        Thank you so much Steve! That makes me feel much better! This trip is very important to me and I really don’t want to cancel, but I don’t want to be ‘that person’ that can’t keep up! I doubt if I’ll do any hiking but just the town of Breckenridge is at about 9500 feet elevation and it’s in a valley!

      • Terry Selb Says:

        Molly, actually, I happen to be ( sad footnote on that in a minute) a private pilot and fly around in those little 4 seater planes you see in the sky once in awhile. These small planes do not have any pressurization and you typically fly at altitudes of between 5-7,000 feet with occasional need to fly at up to 10,000, which I have done. Happily, I really did not have any problems with this whatsoever and was extremely happy when I learned that I would be able to pursue this hobby that I really enjoy.
        Private pilots must undergo a bi annual FAA flight physical and my turn came up last month. (I came down with this condition 9 months ago) Sadly, I was informed by the FAA flight doctor that he had to revoke my medical certification and I will never be able to fly again unless my lung starts working again
        I can’t explain it, but when I first was diagnosed with a left paralyzed diaphragm I went on several coast to coast flights to visit family. I must say that I immediately felt short of breath when the plane was pressurized and had pretty uncomfortable experiences. It was tolerable but not very pleasant. Yet in my non-pressurized small plane I never had a problem with breathing. Maybe someday I will be able to resume my beloved hobby but for now it is gone.

      • Judy Says:

        Hi Molly and Steve,
        Steve I am so happy to hear altitude did not bother you . I have been afraid to go to any altitiude and have kept to the low elevations when I go for my short hikes.
        Well I had my surgery with dRKaufman and DrBauer last FRiday March 11th. dRK says all went well. He was very happy with everything.. It is funny that he and I and my pulmonologist all thought the damage to my nerve was in my chest from a thoracic spine surgery in Dec 2009. When the cardio thoracic surgeon put a camera in, the nerve was visualized and looked perfect, no damage at all. So then DrKaufman went exploring in my neck. There he found the damage. So he took a smaller piece of nerve from my sural nerve in the back of my right leg and did the nerve graft. He also really thought seeing my damage had been done so long ago and my diaphragm had not had any exercise that I should get a diaphragm pacemaker. I really did not want one as it has an external plug, the type he could put in for me under my circumstances. I had told him only if he could not do the nerve graft to put one in. then I emailed some friends and my pulmonologist and asked their opinions. some just said tough decision. One that made me decide to have it said. Why are you asking my opinion . I would ask the experts to do anything they can to help me. It made perfect sense. so I do have a diaphragm pacemaker. DrKaufman said when he stimulated my diaphragm in surgery he got such a good response that he put the device in. He now said it will only be temporary. It is good to exercise the diaphragm muscle to get it strong again. Then they can just snip the wires from my diaphragm and leave the ones in. But the problem I have with that is no MRI’s is the company policy. He has called them as that was a major concern of mine with my spine problems. He called them again and they never did any research on tjhat which is why they said not to have an MRI. Now they are gong to research the problem .
        I still don’t have a good idea aS to what is actually in my body and what is sticking out There are a lot of supplies for the pacemaker. ‘some quite expensive. I got a lot of tegaderm from the 2 nurses I asked and a lot of gauze. The batteries are very expensive, they give you 6 of them, but to replace them are like $120 for 3 !!! I may make it on the 6 depending on when I get to stop using it.
        I was in the hospital from the surgery Friday and got out on Tuesday late afternoon. My case was different as I had chest incisions and a chest tube which was removed on Sunday. Tjhen ihave a rare endocrinology disorder of my pituitary gland. I needed to have my level of cortisol checked. That brought in an endo consult aNd because of my sleep apnea a pulmonology consult. It got complicated. I won’t go into details here. I did have a problem with desaturating. I think my oxygen saturation when taking few steps would go down to 82%. They should have done the walking test a second day, yesterday am, but never did. I just looked at my vitals as they checked them and it seemed my oxygen was about 93%. I may buy a pulseoxometer at target or somewhere before I fly out on Friday. I see DRKaufman tomorrow am after a chest x-ray at the hospital. They did have to deflate my lung and he thought Monday morning that maybe it had not inflated all the way yet. So I will get to report on flying across country after the surgery as well. I aM so so glad I had this surgery. He and I both have great hopes for a wonderful improvement. You do have to build up your pacemaker use, so it will not be any immediate notice of difference. It takes the nerves a long time to regenerate so I am not looking for any improvement right away, I would start looking for improvement in about 6 months and it can go on for a few years. Great decision.
        JUdy

    • Dee Says:

      I flew to the Grand Canyon before surgery and Europe after and had no issues due to my diaphragm but that being said everyone’s level of the severity of the paralysis is different. My issue became an problem as I hiked out of the canyon . Became short winded etc… but made it out….

      • Judy Says:

        Catpowered did you aquire the infections at the Jersey Shore hospital? I was kind of shocked about a few things there. Both my 21 year old daughter and I noticed right away that not many people use gloves in giving you IV meds or examining you. We were kind of shocked. Then the second thing is you do get antibiotics through the Iv for maybe just surgery day and possibly the day after , then they stop. Yet you do have the prescription for antiobiotics from drKaufman at your apt to continue once out of the hospital. There is a couple of day lag. I asked my nurse about this, he did not have a good answer, they just follow instructions. I am used to much more care to avoid infections. It is usually all over the room that you have the right to ask anyone that does not come near you with gloves to put them on. Also use of the lotion , it is on the wall, again was not used consistently. I thought it would be an easy way to get an infection. I am praying I did not I think MRSA was one that the hospital had higher than normal statistics for.
        About the pacemaker. I had investigated them before hand as he had mentioned them to me before. Ilooked them up and believe the company Avery has one that is fully implantable so no worry about the wires sticking out. DrK explained why with my injury in my chest it would involve much more surgery to use this device. then if I wanted it out, it would mean chest surgery to remove it. Not so with the synapse device he used in me. I did write to Avery and they have responded to me and even have asked for a time to call me ,, even after the surgery and I wrote that I already had the other type put in. You could start there. go on their website for diaphragm pacermakers and they have some studies they will email you and follow up with you. I will speak to the rprsentative one of these days next week when I am back home.
        judy

      • catpowered Says:

        Yes Jersey Shore Medical Center is where I got it. I’d never ever go there again. I honestly can’t comment further on that. The in hospital care and after care was not great. I was a one day stay.

      • Judy Says:

        I’m sad you got those infections at Jersey Shore, but not surprised. Contact Avery the fully implantable one seems to be the only one I would use if I were you.

  203. Molly McCoy Jesberger Says:

    Wow Terry…I’m so sorry you lost your license to fly. And how strange that you had difficulty with pressurization and not in the small plane. I know I read a few people who didn’t have any problem flying at all..Man this condition stinks! Judy, I’m glad things went well for you! Do you know how many of these pacemakers Dr. K has put in? Hopefully it puts you on the ‘fast track’ (as Dr. K puts it!) to feeling better! Thank you both for responding :)

    • catpowered Says:

      Great news Judy. Encouraging. I had a phone conference with Dr K a couple weeks ago. Pacemaker was mentioned but he has reservations because of the MRSA and Psudemonas infections I acquired my first go round. That has the probability of recurring and wires coming through the skin are a source of trouble in that case. Not sure what if we are doing anything. I am going to do a consult about plication just to get more informed. Again though I’d need to be cleared of infection to proceed.

    • catpowered Says:

      Great news Judy. Encouraging. I had a phone conference with Dr K a couple weeks ago. Pacemaker was mentioned but he has reservations because of the MRSA and Psudemonas infections I acquired my first go round. That has the probability of recurring and wires coming through the skin are a source of trouble in that case. Not sure what if we are doing anything. I am going to do a consult about plication just to get more informed. Again though I’d need to be cleared of infection to proceed.

      As for flying I’ve actually done well. I was nervous initially but had no issues. Swimming though, well let’s just say I’m a good anchor.

  204. Dee Says:

    thought should pass on my bad news… almost two years after my surgery my doctor informs me that my diaphragm is still paralyzed.Well at least we tried

    • Steve Crozier Says:

      Sorry to hear it. :-(

      • catpowered Says:

        I hate to hear that as well. Such a shame to have went on the journey and see no results. Keep the faith. My wife has told me don’t bother with any more tests, just keep living and quit beating yourself up over the hope that something is going to change in regards to your condition. Take what you have make the best of it and appreciate all that you have.

    • Molly McCoy Jesberger Says:

      So sorry to hear that Dee…and that is very good advice Catpowered. I try to think that way and stay positive. I tell myself that I could be much worse off, but on the bad days (and nights) it can be difficult…

    • Brenda Says:

      Dee
      I am so sorry to hear your news. I know that was very hard to hear…..thinking of you.🌷

      • Juanita Says:

        My son has bilateral d.p. Three hospitals later he has been diagnosed with Pompe disease. This is rare and effects the diaphragm . You can be tested for this with a blood test.

      • Dee Says:

        After hearing that my diaphragm was still paralyzed went to my physical trainer last week and after thirty min of doing breathing exercises she said that the person that read my sniff test was wrong… that she can feel mine working and see it.. maybe not like the right but still working.. she emphasizes to me that we do not always know or try to use our diaphragm , especially when one has a paralyzed one for so long// The story continues…but I plan to trust her and will try to work on breathing from my diaphragm more…HOPE HOPE HOPE.. thats all we have

      • Judy Says:

        Dee that is exactly what I thought after all my experience with the sniff test. No one can read them, yet to me they seem like it would be simple. When I met with the rehab therapist in NJ, she told me after seeing me for a few minutes that I was using all accessory muscles to breathe and not my diaphragm. I was surprised as all my doctors notes always say I am not using accessory muscles. I was telling my RN daughter and she said all those boxes to check on medical forms are just checked off no one really looks . I have to still look for a therapist. But I am only 2 weeks out of surgery, it seems like it has been longer. I notice even when I come back from the kitchen and am breathing a bit heavy , I try to then focus and use my diaphragm. I haven’t turned the pacer on yet. I thknk I will find out if starring Friday is ok. I have to buy something to carry it around with though, the receiver box does not come with any strap or anything . Keep hoping, we will get there or at least improve all that is humanly possible

      • Dee Says:

        go get em !!! We are all in this together…. we will win .. just may take some of us more time

      • Judy Says:

        I agree, I knew you were also a fighter, Dee

  205. Thomas W Maddalla Says:

    I’m so sorry to hear about your sons diagnosis. I hope your doctors have sent you to the right services for this type of therapy. I understand that the Children’s Hospital of Pittsburgh has had good results in this area. Let us know how things work out. Maybe Steve Crozier can comment on this condition when he reads this. May God bless you and your family. Tom

    • Steve Crozier Says:

      This might be a good time to remind all of you here that I’m not a doctor…just a guy with a paralyzed diaphragm. So I can’t comment on any other conditions.

  206. Lois Jankeloff Says:

    Hi Everyone, I am a 59 year old woman in relatively good shape. Have been very active; playing tennis and going to the gym. After routine arthroscopic knee surgery I developed shortness of breath, a sensation of being “strangled” at times, and a dry deep cough. Long story short a pulmonologist saw the elevated left diaphragm on an x-ray, and after CT scans and MRIs a neurologist diagnosed this as Phrenic Nerve Palsy. I am relieved to hear there are others out there and the possibility of recovery. I have been told it might spontaneously recover like a Bells Palsy, but it has been 8 months now. I can be active but am constantly uncomfortable and aware of this different sensation and breathing.
    Any thoughts of what to try?
    thank you so much!
    Lois

    • Judy Says:

      Hi Lois, after a paralyzed diaphragm for over 7 years I just got back from New Jersey and had phrenic nerve surgery with DrKaufman.If you have read through this blog, you will know who I am talking about. If not let me know and I will tell you more about him.
      Do you know if your diaphragm is paralyzed on one side? If so I have a suggestion. It would be to find a therapist who can do diaphragm training with you. I found out when I went to the east to have this surgery that I have been breathing all these years with my accessory muscles. I will hopefully start diaphragm retraining next week. It is a slow recovery. But I am 58 and was very active until this happened . I had surgery which triggered the whole problem. In the recovery room I stopped breathing and was put on a respirator for a few days and then kept in the hospital a few weeks. I used to be a mountain trail runner and since then I mostly walk and go on short hikes for exercise. I’m sorry you have found yourself in this position.

  207. Lois Jankeloff Says:

    I just found this blog and tried to post so and didn’t see it so if this is a duplicate I apologize.
    I am a 59 year old relatively active woman; goes to gym a couple times a week and plays tennis a couple of times a week. Eight months ago I underwent routine arthroscopic knee surgery with general anesthesia for torn meniscus after much unsuccessful PT. All went extremely well except for the shortness of breath, pressure on my neck like being strangled on occasion and dry deep cough. Long story short diagnosed with left diaphragm paralysis and after scary causes ruled out the neurologist said it is Phrenic Nerve Palsy. He feels an autoimmune reaction to something from the surgery, anesthesia or trauma. He said it might spontaneously recover like a Bells Palsy does.. Has anyone had that experience?

  208. Judy Says:

    Has anyone else gone up to higher elevations with this problem. I went for the first time in 8 years this past weekend. I always avoided it as I assumed it would be difficult. After my surgery , I purchased a pulse oxometer. So I went to Mammoth Lakes, ca with my daughters this past weekend. The elevation is apx 8,000 feet. well just walking from the car to the hotel room I was so out of breath. I used the device and found my oxygen sat to be at 84%. Just sitting still in the hotel room it would only go up to 87%. I took my dog for a short walk the next day and I went down quickly to 80%. It was a very uncomfortable weekend. Back home it is 95-97%. It felt terrible up there which is sad as I love the big mountains. Hopefully time will improve this

    • Steve Crozier Says:

      Judy, I’ve been at around 11,000 feet for a long weekend, with no major difficulty. I noticed it, but it was never more than mildly uncomfortable. I should note that I didn’t do anything more strenuous than walk around the mountain town. :-)

      Obviously, everyone’s going to be different on this.

      • Judy Says:

        Thanks Steve , I know I was very out of breathe when I got there. I did walk around for about an hour with my dog and was ok. Nothing strenuous. Maybe the fact that I kept checking my o2 made me feel worse than it was!!

  209. Brenda Says:

    Judy I am so very sorry about your issues with higher elevations. It saddens me to think we are limited to lower elevations….. I haven\’t been in a higher elevation area since I was diagnosed last year. I hope you continue to improve every day!!

    • Judy Says:

      Thanks Brenda, I have stayed away from the elevations since 2009. I am very hopeful that I will begin improving once I turn on my diaphragm pacemaker!! Probably thursday

  210. Nanci Lemanowicz Says:

    Just came across this blog this afternoon. I am a 58 year old female who underwent C3-7 Cervical Laminectomy with bone graft, pins and rods. Developed C5 Nerve Root Palsy shortly after surgery. Surgeon told me majority of times this goes away within 12-24 weeks. Took a 10 day steroid for excruciating pain from right shoulder to right fingertip 14 days after surgery. Stopped all pain meds; oxycodone, OxyContin after 3 weeks. Gradually noticed shortness of breath, fatigue and sleeplessness just 2 weeks ago. Thought I may have pneumonia. PCP ordered chest X-ray. Test showed no pneumonia, but showed right hemidiaphragm paralysis. Breathing test at 60%. Fluoroscopy confirmed same. Started a 30 day regimine of prednisone. Pulminologist stated phrenic nerve may be inflamed. Cannot walk 10 feet without started to feel winded. Anyone else on a regimen of prednisone for same?

    • Steve Crozier Says:

      Nanci, you have all the hallmarks of the condition that we’re discussing here. We’ll keep our fingers crossed that it’s “just” inflammation.

    • Judy Says:

      Hi Nancy, I never took a course of prednisone for my diaphragm paralysis but I have been on it for spinal inflammation since my surgical accident. I hope it works for you. I also developed foot drop from my lumbar spinal inflammation. I had tendon surgery to correct it, but it failed. I am do to have surgery on tendons again in 3 weeks to try to fix that problem.
      I just got back from Nj and had surgery to repair the damaged phrenic nerve last month I also have a diaphragm pacemaker as I have had the paralyzed right side since 2009.

      I do have a caution on the 30 days of prednisone though. I also have a rare pituitary failure. It is a gland in the brain that is called the master gland as it controls all hormones. I do replace many hormones as well as cortisol. It is the stress hormone and I no longer make it. You cannot get whole pituitary failulre from being on steroids, but you can get cortisol failure in your adrenal glands. While you are taking an above normal amount of prednisone, your adrenal gland does not have to produce cortisol as it realizes the body has enough. It may not kick into gear after you wean off the prednisone . then you would need to replace it this hormone is necessary for life. You cannot live without it. Just a caution, it does not happen to everyone. One way to try to prevent it is to wean slowly off the prednisone, just not cold turkey. If you have any questions on that feel free to email me. I work for the doc in the country that many people come to see when they have these rare conditions. My email is sewell4444@gmail.com

      • Nanci Lemanowicz Says:

        Thank you for your reply Judy. I am keeping my thoughts positive, thanks to my husband who reminds daily just how blessed I am to have my health, as much as dealing with my current situation. I was an avid swimmer and bike rider before surgery and really do pray that I am just dealing with temporary inflammation from the surgery. That is why I have no choice, but need to give the prednisone a chance to see if it corrects my situation. As an FYI, I had posterior cervical surgery because the spine was laying on my spinal cord. As time progressed, I could have faced a possibility of living the rest of my life in a wheelchair. That was not my choice. I wish you much luck in your continued healing. Thinking positive is the best thing we can do for ourselves…..Life is just too darn short. God bless!

      • Judy Says:

        Yes, Nancy I agree facing life in a wheelchair is not a pleasant thought if you can avoid it. As my back basically crumbled I was heading towards a wheelchair as well. I did spend a short amount of time in one after one spine surgery where all the screws pulled out and I just fractured at the sites of the screws . It was too painful to put my foot down. I was a mountain trail runner before my injury to the phrenic nerve as well. Now I go on slow , short hikes!! But I would never give up on exercise. All the best to you and let us know how you make out with the prednisone,

      • catpowered Says:

        Judy hope all is well. How are you doing? Did the pacer get turned on yet?

        I also am curious about the pituitary failure. I haven’t been diagnosed with that yet but have had an MRI suspecting a tumor which was negative. The Dr wants to investigate this further because my T level is in the tank. Like less than 40 at one time and less than 50 another. Something is wrong.

      • Judy Says:

        Hi Catpowered,
        I started using the pacermaker 3 weeks ago .I don’t feel anything when it is on. I have it on during the day and not at night. I already have a mask from sleep apnea and that is enough to worry about at night.
        As for pituitary failure, I work one night a week at my endocrinologists clinic for hard to diagnose endo problems. I first flew from Ga to Ca to meet him in 2005. I knew something was wrong. I was tired, told my friends at work that caffeine didn’t work any more for me . I was an obsessive runner and knew my times were slower. I had high bp and was sent to a cardiologist. I did the second best of anyone he had ever seen on the treadmill stress test. He said seeing I ran so much my bp should be low and he decided it had to be an endocrine problem. He had me see my HMO’s endocrinologist. Well that is the beginning of a pain in the ass tine . Endos, almost all of them know about diabetes and maybe some about thyroid disease. That is it. / they tell you that you are normal. They don’t even test the correct things for thyroid disease. I went through a few endos got out of my HMO system and finally flew to see DrFriedman in Ca. all the research articles pointed to him. He is an expert . Often patients after seeing a bunch of endos in their area and being told their MRIs show no tumors , come to see DrFriedman and he will find a tumor on the film. It has to be a 3-tesla I am blanking on the other part. Anyway , then they have surgery to remove the tumor. I have no tumor. You can also get pituitary failure from a good bang to your head. Also if you bleed a lot in childbirth it can damage the pituitary gland. If you want to email me about this, I am at sewell4444@gmail.com I am having foot surgery for the second time trying to fix this foot drop on Monday so I will be hanging around not being able to go anywhere and will be able to communicate freely.
        I now replace, 2 types of thyroid meds, estrogen, testosterone, vitamin D, cortisol, growth hormone and I forget off hand what else. It makes all the difference in the world.

  211. Pique Says:

    So, is your phrenic nerve healed at this point?

    • Steve Crozier Says:

      Nerve study showed that my phrenic nerve is working normally. This was about 10 months post-op. Note that that does *not* mean that my diaphragm is working normally.

      • terry selb Says:

        Well I find that information intriguing about your phrenic nerve test result. Have previous results shown this same in the past? Does this mean your diapragm is parpalized for some other reason? Just interested, not trying to ber nosy.

    • Steve Crozier Says:

      With my usual caveat that I’m not a doctor, just a patient….

      When we say “paralyzed diaphragm,” we really mean “damaged phrenic nerve,” at least early on. When the phrenic nerve is damaged, it can’t fire off the diaphragm, and so the (hemi-)diaphragm doesn’t work. Since the interesting part to the patient is the diaphragm, we take a shortcut and say “paralyzed diaphragm.”

      However, since the diaphragm is a muscle, it atrophies over time if it is not used. If one’s phrenic nerve is damaged, the diaphragm is not being exercised, so it atrophies. Now you’ve got two problems: a damaged phrenic nerve and an atrophied diaphragm.

      Dr Kaufman fixed my phrenic nerve, apparently successfully. However, it had been about 4 years since the damage, so it’s likely that my diaphragm had seriously atrophied. That is why we do rehab…to exercise it back to shape. Whether or not that works appears to be related to length of time of phrenic nerve damage, the individual’s physiology, etc.

    • Judy Says:

      Steve, I wonder if that is why DrKaufman really wanted me to have the diaphragm pacemaker to strengthen my diaphragm muscle. It does make sense. I really didn’t want any external plug, but went ahead and changed my mind the night before surgery.

    • Nanci Says:

      I am still on the prednisone, down to one a day for the next 8 days. Follow up with the pulminologist on 5/23. I seem to have more energy but still have shortness of breath on exertion. In the pool everyday, nothing compared to my pre surgery, but getting some exercise albeit slow.

  212. Judy Says:

    Nancy I wonder how you are doing. I didn’t notice before , but you say you swim every day. Most of us are not able to swim . It has something to do with the pressure and the diaphragm, Maybe some one will get on here and explain . Before my accident in surgery, I used to swim a mile about 5 days per week. I loved it. the first time I headed into the pool since the surgical accident, I jumped in and thought I was going to drown. I didn’t know what was wrong the only thing I could do was back swim. I know I looked bad and shocked when I couldn’t swim and one man said I should just walk in the water until I learned how to swim!!! I have swam my whole life. I just gave up at the pool. Havent been back. then on here I read about others having the same problem and realized it had to do with my diaphragm.
    I am in so cal and DrKaufman is coming this month. I will be seeing him on June 24th

    • Nanci L Says:

      Hi Judy,
      Been a while since I’ve been on, but just received a couple of posts in the past few days. Are you not able to swim because of the breathlessness on exertion? I guess I need to correct myself. I have not been able to swim. But, I am able to put a belt on, and deep water walk. Up to 60 minites most days of the week. I’ve been to follow up with Pulminologist and Surgeon last week. Both keep telling me to be patient. Surgeon told me of all his patients, I am the only one he has seen with diaphragm paralysis. Either he is full of shit, or really being honest. Not much has changed since my surgery on 2/22, but I feel like I have more energy. I’m so sorry that you are having trouble swimming, but if you love the wAter, try changing it up a bit. We need to think positive here and realize we could be worse off. Good luck Judy!

      • Judy Says:

        Hi Nancy it is not the being out of breath , I still go hiking, I am just slower than even the kids. It is more like a feeling of drowning . I see no one else commented but if you look back over the posts you will see one from a parent that wanted to swim with their children, I think others joined in to explain it. Oh I know I thank my lucky stars that my medical conditions can be managed. Not at all the way I expected middle age to be as I was a super heatlh nut and exercised every day and fed my kids and myself healthy. Aside from this problem, I also have a really bad spine that has been operated on about 13 times. I am now fused all the way through with the exception of C 1 . I also have a rare condition where my pituitary gland stopped functioning. the pituitary gland is known as the master gland and it controls all hormones which basically control life functions. I replace all hormones. It is difficult to keep them all balanced as Mother Nature would. Sleep apnea and Gerd too. Osteoporosis do to the lack of growth hormone which is one of the pit hormones. As a child we need it to grow tall, as an adult we still need it for bone strength and a lot of psychological reasons as well as cognitive function. I have a lot going on, but know it could be a lot worse.
        I sure hope you do continue to improve. I know after having about 21 major surgeries since 2007 that surgery takes a lot oout of you, it does take a while to recover each time. TAke care of yourself. Keep us updated on your breathing
        judy

  213. AM Says:

    New to this situation at and the options. At 62, short of breath on a flight of steps (recovery of normal breathing taking 3x as long as the time to climb the stairs). Have just been told that there seems to be left side Phrenic nerve damage – and this must be the difficulty behind the left lung not inflating. All sorts of scans this week (It’s expensive). I appreciate the blog and wonder about both information about reaching Dr. Kaufman (should this ever be needed) and about phrenic nerve replacement techniques and developments. Thanks

    • Steve Crozier Says:

      AM, glad you found us! You can find information, including contact info, about Dr Kaufman here: https://www.looknatural.com/matthew-kaufman-md/. As to the techniques and developments, Dr Kaufman himself is probably the best source. Those of us here are (mostly) patients of his. We have had various surgeries over the years, and I think the approaches and techniques continue to evolve.

      With my usual caveat that I’m not a doctor…have you had a sniff test? I believe it’s the definitive test for a paralyzed diaphragm (due to phrenic nerve damage). Curious as to what all they’re scanning…

  214. Peggy Valotta Wicker Says:

    In 2012 my nerve was severed during heart surgery. You have given me hope that I will be able to breathe again and live an enjoyable rest of my life un-tethered from my oxygen!

  215. Bridget Says:

    Thank you so much for writing this! I am the parent of a toddler who had open heart surgery last week and we learned yesterday that our sons left diaphragm is either stunned or paralyzed. We are still in the hospital and there have been multiple conversations around plication. The thought of permanently changing the diaphragm of my 2 year old and putting him back into surgery makes me extremely uncomfortable. Thank you for not only doing your research but giving me a different perspective while I am working with medical professionals who want to make quick decisions while he is still admitted and in their care.

    • catpowered Says:

      I am not doctor but I’d wait. I have a good friend that last October had a right lung transplant and lost right diaphragm function. It took a few months but it came back. Now if they can look and see where they definitely know where the nerve was cut or damaged that is a different story.

      • Brenda Says:

        Brigette I would also wait…. A year ago this June I was diagnosed with left paralyzed diaphragm (phrenic nerve). Just this past June I had a pulmonary function test, chest CT scan and a “sniff test.” The sniff test showed that my diaphragm is no longer paralyzed, my pulmonary function was normal and the CT scan showed no issues. It was a very long process of a year, but Thank God I am healed!
        Mine was caused from a interscalene nerve block for shoulder surgery. The catheter for the block was inserted in my neck and left there for over 36 hours where numbing medication was going in every so often.
        I feel almost guilty telling you guys this because I wish this could also be true for each of you!!! Praying healing will come for all those afflicted with this health issue🙏🏻. I know how it feels and how hard it is to live with.😥
        God Bless you Brigette and I pray for healing for your sweet toddler. ❤️🙏🏻❤️
        Brenda

      • Nanci Says:

        Glad to see you are on the mend Brenda! That is a comfort to me to keep thinking positive, and that I may have light, being although dim right now, that I may recover as well. Good luck to you!

      • Brenda Says:

        Nanci
        Thank you so much for your well wishes. It means a lot to me.
        How long have you had a paralyzed diaphragm and do you know what caused it?
        I hope and pray that you have healing also. I know exactly what you are going through. It isn’t easy but don’t give up hope. I think my healing was a miracle. Miracles still happen❤️
        Take care and good wishes to you.
        Brenda

      • Nanci Says:

        Hi Brenda,
        I’ve been thinking about you a lot these past couple of days because, like I said before, you really have given me hope that my phrenic nerve will start to work again. I had posterior neck surgery in Feb. and developed C 5 nerve root palsy right after. Was healing slowly, infection at cut site, but not feeling up to par. In April, went to my PCP because I thought I had pneumonia. X-ray done, and the next day fluoroscopy confirmed right diaphragm paralysis. I think I had this all along, but was on those horrible meds and just laying around. Surgeon has no answer, just that I should be patient with the healing process. Pulminologist told me 50/50 chance it will come back. No one has anything positive to say. In the meantime, my life has taken a 360. Can’t even ride my bike for more than 10 minutes. No elliptical, no fitness classes. The only thing I can tolerate is piddling around with a belt on in the pool. Talk about getting your metabolism going….There are so few of us on here that have this problem makes it frustrating to find any useful information. Depression was never an issue for me, and now I’m dealing with it, big time. I’m sure every one of these bloggers is dealing with that as well.
        How did you deal with this for the past year? What kind of answers were you given? Was your nerve cut or were you told it was inflammation of the nerve? That is what I was told? Seems no medical personnel wants to discuss this issue. Talk about feeling isolated. I appreciate Steve’s blog on the surgery issue, but that is not the route for me. I feel like I’m suffocating sometimes.

      • Dee Says:

        I hv no idea what my diaphragm is doing but… am walking a lot of mornings at 530 am… before heat sets in and going 3 miles with NO issues.. went to swim yesterday ,, swam a lap and had NO breathing issues…my pulmonologist has no answer… most lung doctors think we all have COPD. Let me say this to all listening … when you do a sniff test at your local hospital… it is a joke .. they are robbing you and your insurance company of money… they have no idea of what they are doing ..TO ALL OF MY FRIENDS ON THIS SITE…. please please as you breath in .. whether hiking walking or swimming concentrate on using your diaphragm …..I am no doctor. but since it took my doctor a year to discover that I had a paralyzed diaphragm… I might be just as good.

      • Brenda Says:

        Nanci
        Sorry I haven’t gotten back to you sooner. I have been on vacation.
        I cannot tell you that I did not have moments of despair and depression. I did. It’s quite a shock to have a diagnosis where there is so little information and help. I was sent for various CT’s, MRI’s, nerve conduction tests, sniff test, etc. I went to my primary first and then from there saw a spine surgeon, a neurosurgeon, a pulmonologist, ( he said if it was caused by nerve block it would have a better chance of healing than if it were from an accident, etc). I also had a nerve conduction study but not of my phrenic nerve. No one had any answers. It was very frustrating and left me feeling helpless. I know and understand all of this. Your family cannot even understand what you are going through…….

        If you read this whole blog you know that I believe my diaphragm was paralyzed by an inter scalene nerve block for shoulder surgery. It took a year for my phrenic nerve to heal and it was a very long and slow process. The nerve can only heal 1″ a month so that makes sense. I believe that a catheter for the block that was placed high up in my neck caused it.
        In the beginning I felt like a fish out of water, like I had to think about my breathing all the time. I started walking on my street which has a pretty steep incline and I started doing proper deep breathing when I inhaled. I breathed air deeply into my belly (like a newborn who breathes properly). As women we try to hold our tummy in and do not breath properly. Then I would exhale and blow out all the air I could. It seemed to help and I figured that perhaps doing so would make my right side stronger and compensate somewhat for the left diaphragm not working. It did help some and I was breathing a little easier.
        I never gave up hope and I put my faith in God. I had many people praying for me. I also told myself in my most difficult times that it could be so much worse… That I could have a horrible painful cancer or some other terrible disease. I didn’t question why. I was grateful to still spend time with my family and friends, especially To spend special time with my son, daughter-in-law and grandson.
        I tried to stay positive though I can’t say I always did. We all have our moments. My advice would be to stay as busy as possible. Do not isolate yourself. Do crafts or something that will get your mind off of your malady.
        I have done enough research to know that it is likely your phrenic nerve was injured when they did your cervical surgery. The phrenic nerve goes through C-4 and C-5. It’s too bad your doctor won’t admit that it happened. It does happen from time to time. From my experience the doctors all stick together and will not say anything about another doctor. The medical “rule of law.” Sadly.
        Nanci I will be praying for your healing. It’s only been 4 months so do not give up hope!! Stay positive and try to be thankful for the small things. It helps!❤️ I would stay as active as possible and listen to your body when you are tired.
        My son and his family ( who live in another country) were here for Christmas. (First Christmas ever with our 10 year old grandson❤️)
        I didn’t let it keep me from doing anything. We did a lot of walking.
        I was determined to make the most of every moment. We went sightseeing to an underground lake In a cave. The walk down was fairly steep but not difficult. Coming out I had to stop 3 times to get my breath…….that was in December. But I did it!!!
        In June after CT scan, pulmonary function test and sniff test pulmonologist hold me that my diaphragm was no longer paralyzed.
        Joy beyond compare and I am grateful beyond words!!
        Nanci Praying you have strength, courage, and healing.
        If you have any questions please don’t hesitate to write. I hope I have not discouraged you. It’s not my intention at all.
        Thinking of you
        Brenda
        BTW where do you live?

      • Nanci Says:

        Hi Brenda! First of all, I thank you so very much for your lengthy response about the issues you had with this crazy condition that we both have shared in. I can tell you honestly, if I knew that I would develop this after cervical surgery, I would have suffered through all of my pain to avoid it. Never would I ever have imagined dealing with this in a million years. I never even heard of it before my surgery! I agree with you though, I do need to count my blessings every day that I am otherwise a healthy woman for my age, no high blood pressure, diabetes or any major health issues. I don’t sweat the small stuff anymore. I wake up every morning and thank God for one more day.

        I guess what frustrates me the most, is that there is zero support for this condition. No one to talk to with similar effects, issues or how they even deal with it. Makes me feel isolated sometimes. It is so true that no one can understand what we are going through, unless they have dealt with. My husband gets frustrated with me because, at times, I get flustered and take it out on him. I did find a Facebook page for paralyzed diaphragm members, and I asked a few questions to the group, but not much more. The hardest part of all of this, is that I used to love to exercise, get my endorphins going. Now, all I can do is walk short distances, and piddle around the neighborhood pool with a belt on in the deep.

        I thank you again for your encouraging words. I’m trying to stay positive, use my Nebulizer and spirometer just as the Dr. instructed. I go back for follow up with the ortho surgeon and Pulminologist in September. I live in Leland, NC, but resided in Raleigh for 16 years. All of our Drs are with Duke, so we decided to stay with them. Just an FYI, my email is jll52nfl@ec.rr.com. If you’d like to keep in contact with me instead of going through this blog, that would be great! Thanks again and blessings to you on the long awaited return of you breathing normally!! Take care, Nanci
        PS…did you take any flying trips when you had this condition? I’ve seen on this blog that some had problems. I spoke with my Pulminologist and he stated since my oxygen is at 97 I should be fine.

      • Steve Crozier Says:

        Nanci, I only see one person in these comments who mentioned a problem flying, and quite a few saying they haven’t had any trouble. I think your odds are good that you’ll be OK.

      • Judy Says:

        I have flown across country many times and have never had problems with it. My o2 was closer to 93

      • Brenda Says:

        Sorry Nanci. I see that you are from NC. I live in TN.

    • Juanita Says:

      Please be sure you or anyone has been cleared of Pompe disease.

  216. JJ Says:

    I was diagnosed with diaphragmatic paralysis last year after an accident. I was all set to have the surgery done until reading this blog. I expected to find more stories of success given the claimed 70-80% success rate (i.e. clinical improvement – movement in the diaphragm shown by a sniff test, or an increase in lung function via proper lung function test scores). Given there are 200 people who have had this done, I was hoping to find more support for the procedure. At $150-200k why have no other pioneering nerve surgeons may have offered a similar procedure. However, I’m struggling to find anything but this blog, which doesn’t reflect the success rate from what I’ve read.

    • terrance j selb Says:

      I have had this condition for a little over year now and I can tell you from previous posts (including my own) that you will be hard pressed to find but a possible handful of individuals who have indicated scientific and medically accepted standards of an improved condition from this surgery. I have done exhaustive searching to find ANY other plastic surgeon that performs this procedure and have not found anyone which does raise serious questions about this procedure.
      My principal objection is that this doctors’ website gives people a misleading belief that this problem is resolvable through his exclusive surgical technique. At best there should be a clear disclaimer that this is experimental, at best.

      • Judy Says:

        I want to leave a reply first for JJ and also JSelb. My damage occurred to my right side during a thoracic spine surgery. I stopped breathing in the recovery room… It is all a story, but it happened in 2009. I used to be a mountain trail runner and always have been an obsessive exerciser. In 2014 I think is when I found this blog. I then contacted DRKaufman’s office, I was hoping to have surgery here as he does operate in Los angles. Unfortunately I could not find any doc to do the diaphragm EMG I was scheduled for one, but when my apt finally arrived the doc walked in and said I don’t put needles in diaphragms , because of that I missed the surgery date. I had 3 reconstructive spine surgeries last summer and when finally able to move and think, I followed up with DRKaufman’s office. My lung capacity had been around 42%. Some of this is do to my neck position. I had the surgery by DRKaufman in March of this year, 2016. He is such a wonderful caring doctor . I wouldn’t care if it was experimental. He wanted me to have a diaphragm pacemaker. I looked them up and the idea of a plug in me was not the least bit appealing. when I finally met him the day before surgery I declined the pacemaker, unless he could not get to my phrenic nerve as we all thought the damage was in my chest. The night before I decide after talking to a friend that I had flown across country to this expert I should accept everything he had to offer me. I told him the morning of surgery to go ahead with the pacemaker.
        My chest looked fine, he and a wonderful cardio -thoracic surgeon could visualize the whole thihng. In stead of just proceeding with the pacemaker, DrKaufman decided to explore my neck. Sure enough he found the damage and did a nerve graft. We all know that nerves gow very , very slowly. I expect it would take at least a year to see the difference. Now the [acemaker is supposed to be temporaty. Once the nerve regenerates, it will be sending the signal. Wed I just got the highr set transmitters. Well an immediate difference, it is easier to breathe. I feel really horrible mow without it on as when I am getting ready to shower. I would never had even had this improvement if it were not for DRKaurman. He never forced me to acceptthe pacemaker just explained how it would help me. By the way he is wonderful explaining things.
        I am happy I did this surgery. He did stimulate my diaphragm min surgrey and got an excellent response and has great hope of my improving. the waY I feel now is already so much better. I have a pulse oximeter , it has been about 93%. I used it yesterday just curious to see if there was a difference. It went to 99%. I have not ever seen that. So yes he has success stories.

      • Judy Says:

        Hi AM, I’m sorry you find yourself in this position. I just had surgery after having this problem since 2009. Now I just have to hope and pray that the nerve graft works. I have flown in commercial airlines many times, no problems. But I went to altitude , 8,000 feet to Mammouth Ca with my 2 daughters in late March. I had a pretty hard time breathing. I have a little pulse oximeter and my Oxygen was only at 80% up there . All I had done was walk from the car to the room, which was close. WE only spent a few days up there, but I was very happy to get down the mountain. At around 4.000 feet I could breathe again ok. It is sad as I love being in the Sierras. I will now worry about how you breathe up at high altitude. I did come home and research portable oxygen. they do have some small ones, but around $1500 and insurance does not pay . I have to pass on that unless I find I will need it for the rest of my life. Best of luck to

        I’m not sure if an MRI will show damage. The usual test I a sniff test , which is breathing under fluoroscopy and an EMG of your diaphragm. It is also sometimes difficult to get a doc who can perform either one of those correctly

  217. AM Says:

    Steve, Thanks for your blog in its entirety. It takes an advocate and some denials to finally get scans approved. Here is the process they’ve followed:

    My main doctor referred me to a Pulmonologist who ordered 3 tests: A CAT scan to rule out disease, PFT’s (very tiring) The PFT has resulted in unrelenting coughing- (uggh- distressing for family to listen to) and the tiredness saps strength. and the Sniff test (Fluoroscopy). The Pulmonologist referred me to a Neuro-surgeon (some might choose and orthopaedic surgeon instead).

    An MRI for cervical spine and chest is scheduled for Mon.
    The Neuro-surgeon wants to trace the path of the Phrenic nerve to see where it might be or have been damaged. I will write again after I learn more.

    I teach and have not been able to do all the hands on, outdoor climbing I’ve done in the past, chalking the out of breath and slow pace to getting old as well as attributing the exhaustion at the end of the day to how demanding teaching is. I have been trying to hide how little I can do by avoiding activity in front of others. Truly, I am not THAT old and really would like to hike again, to chase my granddaughter and to inspire students by working outside with them. Luckily, on a walk with my son, he noticed my long breathing recovery time after a slight uphill and made me promise to get checked out.

    We have a family wedding in early August at a high altitude- and must fly there in various sized planes – both pressurized and un-pressurized. I’d like to prepare for this if anyone has any ideas, experience or pointers. It has been great to read that many have experienced NO problem flying.

  218. AM Says:

    Judy, Was the EMG the final diagnostic test that determines what type of operation was done? Did they also do a contrast dye MRI to find out where the nerve was impacted or was that not possible because of your spinal surgery. I am not looking forward to feeling so very tired in waves. Do/did you work? How did you handle that? Sorry for so many questions- I can’t understand why this is so ‘new’ or why it has fallen between the cracks on the diagnostic front.

    • Judy Says:

      AM, I don’tthink the Emg determines the type of surgery , more the extent of the nerve signals and their strength I did not have any MRI’s for the paralysis. Dr Kaufman did order a ct scan of my chest as that is where the damage to the nerve was assumed to be. He was looking to see how much scar tissue was in my chest to get a better idea of if they could actually get in there and do any freeing up of the nerve. I don’t think the damage or maybe even not the nerves can be assessed with an MRI. The problem in the chest is the phrenic nerve goes in between the heart and the lungs. That would have made it pretty dangerous and why the cardioi thoracic surgeon in Ca did not want to operate on me. THat is how I ended up in Nj as the cardio thoracic surgeon there said he would put a camera in first and see how much damage there was before he attempted any surgery. As far as woking I was a special education teacher , itinerant teaching the visually impaired and blind. I needed a hip replacement in 2008, I was told not to come back the following year. It really sucked. As it turned out my back kind of fell apart after that so it was the start of many major surgeries in me, which I hope are at their end. I am so exhausted pretty much all day ,I do need to go back to work, not surre what I will be doing, but I am broke and owe lots of medical debt. I just had my sleep med doctor prescribe, nuvigil which Is a med that helps stay awake. It is only used for those who work at night and those wih sleep apnea. I do have sleep apnea so I got it approved. I will need to take this to stay awake at work if I find someone to hire me. Don’t worry about all the questions. I am happy to answer.

  219. Dee Says:

    been awhile since made any comments,,, my trainer tells me I am improving every week… can do planks and sit ups etc that could not do last OCT… Did do an 8mile hike sat and had no shortness of breath.. but it was very minimal incline… so that being said I need to try to things before the end of summer… one… hike with some serious elevation gain and try to swim..I use to coach swimming.. Once I see the results…will report either way… back to the group.. Last time I tried to swim at the Y it was awful. one lap and I was whipped HV not been back since..ONE bit of advice which has NO medical backing only my thoughts and those of my trainer….When breathing in concentrate on using your diaphragm , you should see your abdomen expand…. keeping doing this to try to exercise the diaphragm that is not working…its better than doing nothing??

    • catpowered Says:

      Good for you Dee. When do you have a follow up sniff test to detect movement in the repaired side?

    • Judy Says:

      It all sounds good Dee. One thing I am really curious about Is swimming. I was wallkkng my mile and a half to the train station for physical therapy today and it is hot and I was wishing I could swim. the last time I tried that , I thought I was going to drown and so did a few people watching me at the gym. One person suggested I try walking in the water until I could learn how to swim!!! I used to swim a mile every day. It has something to do with the pressure and the diaphragm , I don’t know how to explain it. Nor do I remember the explanation.
      I am breathing a little easier since I saw DRKaufman in Ca a few weeks ago. He determined that my diaphragm pacemaker was at a setting that was too low for me. I have my new ones the transmitters I guess and am just using the llower one, I can tell the difference from when I turn it off.
      I am finally going to see one of the therapists he recommends at UCLA in a few weeks. I have been going to a speech therapist to learn how to breathe through my diaphragm as you mentioned

  220. Nanci Says:

    Just wondering if anyone is having a hard time breathing with all the humidity in the air. I live in NC and breathing has been quite difficult these past few weeks. I use my nebulizer throughout the day, but the breathing is still labored. It’s been 5 months since my neck surgery, and I’m still trying to stay positive…..

  221. Dee Says:

    nanci .. Gordon and I both live in NC ..I am having no issues with breathing due to the humidity …. but I had the surgery two years ago.. I live in Statesville. Gordon lives around lake Norman…His breathing has improved greatly.. not sure how much better mine has..

    • Nanci Says:

      Dee, I definetely notice a difference in my breathing on hot and humid days. My breathing is more labored and I need to add another nebulizer treatment into the day. Allergies don’t help this condition either. One step forward two steps back.

  222. Cathlin Stewart Says:

    Thanks to Steve, I too found Dr. Kaufman. Unfortunately, my phrenic nerve palsy is caused by residual scar tissue left from a grapefruit sized tumor (nonHodgkins lymphoma) right in the center of my chest (circa 1995). Dr. Kaufman will not attempt surgery as currently it would take the equivalent of open-heart surgery. Bummer. I told him to holler if he can ever enter my chest with a scope method. My diaphragm is still getting nerve impulses, just not enough to create muscle response, and it has atrophied high in my chest. BUT adaptation is good. I can push myself to jog a minute/walk a minute for up to an hour! That is the best I’ve done physically. I do have sleep apnea from the palsy as well. I also have heart failure from chemo and radiation (heart ejection went down to 30% but is back up to 40%). I had breast cancer in 2009 and had to have more chemo! Anyway, this condition is something you can live with. I’m just sad I can’t backpack with a sleep apnea machine…

    • Darren Says:

      Hi all, just come across this post after searching through the web, i contacted my doctor after feeling short of breath and really struggling to tie my shoe laces, also a we a sing sound while sleeping noticed by my partner and keeping her awakeb , after trying all kinds of tablets was told i had pneumonia, i had all kinds of tests and eventually was told i have a collapsed diaphragm and sent away as there is no cure and told to excersise to strengthen other muscles , this hasn’t helped much and i struggle to lift weights in the gym like i used to, im 48 male and thought life would never be the same until reading this, im thinking of contacting this surgeon and i must admit reading this article has also scared me after reading the diaphragm may move into the chest and cause other problems, does anyone have the contact details for Dr Kaufman please ?

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