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.
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.
February 14, 2012 at 9:59 am |
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
February 14, 2012 at 1:38 pm |
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.
February 20, 2012 at 10:44 pm
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?
February 20, 2012 at 10:53 pm
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.
February 20, 2012 at 11:19 pm
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.
February 29, 2012 at 10:13 am |
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
February 29, 2012 at 10:51 am |
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!
March 2, 2012 at 12:14 am |
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.
March 2, 2012 at 1:58 pm |
Good luck to you, Steve. Let me know if I can be helpful.
March 3, 2012 at 4:26 pm
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.
March 3, 2012 at 4:35 pm
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.
March 2, 2012 at 7:53 pm |
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…..
March 6, 2012 at 10:01 pm |
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.
March 15, 2012 at 4:59 am |
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…
March 15, 2012 at 10:47 am |
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.
March 16, 2012 at 2:45 pm |
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.
April 25, 2012 at 4:09 pm |
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.
July 14, 2012 at 8:27 pm |
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. .
July 14, 2012 at 9:39 pm |
Jill, all the best luck to you.
July 14, 2012 at 8:45 pm |
oops sorry that should be 12/21/2011 not 2012.
September 18, 2012 at 4:50 pm |
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?
September 18, 2012 at 4:56 pm |
Hi, vona. I will reply by email. Don’t want to get too personal here, and don’t want to mislead others with my personal situation!
October 16, 2012 at 7:45 am |
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.
November 7, 2012 at 4:56 pm |
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
November 7, 2012 at 5:35 pm |
Eric, I think a call to Dr Kaufman might be useful for you. Thanks for your kind words, and I wish the same comfort for you.
November 12, 2012 at 12:53 pm |
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!
November 13, 2012 at 8:17 am |
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!
December 12, 2012 at 1:01 pm |
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!
December 12, 2012 at 1:26 pm |
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.
December 12, 2012 at 1:44 pm
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.
December 12, 2012 at 2:17 pm
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!