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.

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110 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.

  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…

  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…

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