Here is a postingfrom another site that I write on. Hope this gives you the answers your looking for.
Hello to all that have been reading about and have an interest in a paralyzed diaphragm. I have been writing about this and my own journey for the past 16 months. I had a paralyzed diaphragm from surgery to correct a blood flow problem to the right side of my body. During surgery my phrenic nerve was severed leaving me with a paralyzed diaphragm. I was lied to for 3 years and eventually uncovered the problem when I went to a new Dr.
He in turn sent me to the Mayo Clinic, which by the way is a wonderful place, and they corrected the 1st procedure but could do nothing for my damaged nerve. They suggested placation surgery. While I was there for testing to see if I was a candidate we were recalled to home as my wife was diagnosed with cancer. The good news is this story has a happy ending for all.
While sitting with my wife during her chemo -therapy I continued my search for my problem. I had grown worse and was limited in what I could do. I knew that Mayo Clinic offered a solution but not a cure. I had read the results were somewhat limited and after meeting and building a friendship with a person on line that had the surgery I'm glad that I did not. Turns out later on I found out I was not a good candidate anyway.
In January of 2010 I found Dr Kaufman on line. He had performed a limited number of nerve transplants. I decided to contact him. I spoke to his office and they took some information. The next day Dr. Kaufman called me and we spoke at length about my problem and what lead to it. He asked me to gather what records I could and send them to him. About a week after doing so he asked if I could come to NJ. to have some tests run and meet with him to discuss the results. He felt I was a candidate and told me to take some time to think about if I wanted to have this procedure. I took the leap of faith as I was only #13 to be performed and he told me that length of time that my nerve had been damaged was not favorable but I still had some life in it according to the tests that had been performed.
On March 5th 2010 I had the procedure done and Things were worse that he expected. My diaphragm had made it up to my chest cavity, next to my heart , but this explained the other problems I was having. ( always feeling full and not wanting to eat, having to use a c-pap to sleep, not being able to run but 50 or 60 ft w/o being out of breath and many more problems) A nerve was taken out of my right leg and transplanted to the damaged nerve and connected to the diaphragm. when a signal was received the original nerve was cut. Now there is a bit of a recovery period that seems to last forever. Even though the nerve is connected at each end there is a regrowth period that takes 6 -14 months. In my case it was 11months. At this time my diaphragm began to have spasms. I thought something was wrong so I called the Dr office which was very excited because to have spasms the diaphragm had to be getting a signal. went 7 days a week ( over kill most likely) and worked hard on conditioning. In April I went to visit my daughter in CA. We entered a 5k and I finished in the middle of the pack #228 out of 500+. I was very happy. When I returned home I decided to enter a local 5k. I did even better and won the 55 and over group. Now here is where not being stupid comes in. I entered a 3rd right away and got off of my training routine. I pulled up lame and had to walk the final 2 miles. I continued to aggravate the injury and have had to slow things down for 3 weeks to heal.
The happy ending is My wife is now cancer free and we are continuing to work out together. Nothing limits what I can now do. I have repelled 17 stories into a mine shaft. Climbed steep hills, multiple flights of stairs, walked in the mountains on rugged trails. All of this would not have been possible without the care I received from Dr Kaufman. I have not made a complete recovery as of yet and may never do so! But I have so much more that I can do now I cant say that I'm still not doing more that I would have if I had never had this problem. I joined a gym and lost 30 lbs. Probably never would have done that but fate lead me there.
There are many causes of paralyzed diaphragms. For this "I suggest you speak to your Dr. I do know that Dr, Kaufman has helped people that have had other causes than a bad surgery that paralyzed the diaphragm. You will be hard pressed to find anyone else that know this problem and the treatments than him. I looked for 5 + years and he was the only Dr that had a solution.
If any one else need more info do not hesitate to write. I hope this offers not only hope but motivation to call NJ and talk to the Dr. -Ross
Your story excited me there mybe hope . I have been. Dignosed with it too my doctors Lsu shervport said I could live normal life but that's not true for some . Now it got point can't go swimming put life vest on water persure makes were can't. Breath. Coughing now I get Real light headed . But I have been looking for answer to it all . Now had nerve conduction test they say I have neuropathy so I have nerve damage legs arms so there would be no nerve to replace .
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