Originally Posted by fredebassett

This is my first update in awhile so I hope it offers enough for those sitting on the fence post some encouragement and those new to this site a ray of hope! I’ll do a quick review so it is not necessary or go back and read all the different replies and questions. Back in 2005 I had a subclavian bypass to correct a blood flow issue to my right arm. During this procedure my phrenic nerve was severed leaving me with a paralyzed diaphragm. After reading sights like this and seeing how many people had written looking for help I stumbled across Dr Matthew Kaufman. I called with some skepticism, but felt, due to the complications I had developed over the 5 years since that fateful day, that maybe it was time to take a leap of faith. February of 2010 I flew from Michigan to New Jersey to meet with Dr Kaufman. This came about after Dr Kaufman himself called me to discuss a meeting. This of course was after reviewing my medical records. After a meeting in his office he sent me for nerve testing to see if the procedure was indeed viable. I met with Dr Cole of the Kessler Institute for Rehabilitation. Dr Cole felt that my nerve had not died off completely and was going to send a favorable report to Dr Kaufman. 30 Days later on March 5th 2010 I had the nerve transplant performed at St Peters University Hospital. Now the rest of the story begins. I’m not going to go into all the details again but come up to speed. 5 weeks ago I had some spasms in my diaphragm. This was the 1st real sign of my diaphragm responding to the transplant. I knew when I had the surgery that it was a waiting game. 10-14 months were the estimate for the nerve to grow back. I was getting shocks at both ends of the surgery. Small electrical shocks. I had had some early in the recovery because that is what happens when the nerve starts to “wake up again” At this point I joined a gym and started to push myself. I wanted to find out if this was everything I have waited patiently for. To jump back in time I had digressed to the point of 50 ft and I was all done! Out of breath! Winded! Its been 5 weeks now and I have lost 20 lbs. and have completed four 5k’s to date on the tread mill and will be running in my 1st real 5k April 2nd in Sacramento CA. My goal is to be 35-38 minutes. Now this will not get me an invite to the Olympics but I would hope it would offer encouragement to those who have felt that there is no hope! I encourage anyone that reads this to take that 1st step and find out if you can be helped. My quality of life, though not what it was before my misfortune, is so much better that it was! Now for the last and most exciting news! I went to the hospital today and had a sniff test. I was able to see my Diaphragm move! Yes move! The 1st thing out of the Dr’s mouth after convincing him I need to have this procedure was “Damn! It moved” The Dr that did the sniff test had pronounced my diaphragm dead in July of 2007. The 1st words out of his mouth were. Why are we doing this test again? A paralyzed diaphragm doesn’t get better! It was the 1st time in his career or for that fact the radiology staff had seen this happen. Now I must clarify my diaphragm did not have the movement of my left one so I’m not out of the woods yet but considering it lay dormant for 6 years I’m excited about movement of any type. Will it continue to improve? I don’t know but I want to believe it will! Since this is new territory for me and the severity of my condition when I found Dr Kaufman I can’t say he’ll know either. I also had a Pulmonary Function test today. Mixed results but some improvement in all areas. My blood oxygen is also 100%. That was big! Also the reason I’ve tossed my c-pap. If this has intrigued anyone, PLEASE do not hesitate to write me. I hope I can update this again in the near future with more good news! Ross

Originally Posted by DiMarie

Pherenic nerve damage is immediate and very concerning. The symptoms seem to be another or coexisiting symptom too. THe pherneic nerve traveks to either side of the diaphgram and allows to expane and deflate the lungs. I am not sure about irratation, but damaged nerve is when you need Ox to breath from shortness of breath of the innability to inflate the lung. When I had a friend in NJ had surgery her side effect was a deep raspy voice, almost too hard to speak. She had scar matter post op wrap around the area, a clean up redo was done and did aleviate that symptom.

I would wonder about if you had a breathing tube and damage done from the anestisia? This I heard from other surgeries not a TOS surgery developing and it did take months to have the inflamation calm down.
Post op is not weeks, it is months and years. Not like having tonsils out, an arm break repaired, etc. The nerves for some are fine and others hyper signals, even in some spots permanant feel of novacain numbness.

Do a general search on post op anesethsia side effects and see if anything fits.
Sounds like resting does help you. Becareful chewing, chew everything theorughly, what if you did not feel a too large piece, or too large got stuck .
TOS is always a detective work, not a cookie cutter in the world for us,

I knew of one gal from old forum that had a TOS surgery, first time on this side she had a pherenic nerve paralyzed. Then after a redo on the opposite side the second pherenic nerve was paralyzed. She is on oxygen total for life support, has an aid dog, needs a motor chair to get around and every breath is a challange. w/c was trying to cut O2 for her and we had a campaign to pray and send letters to her representatives to help in the life needed treatment. She was a professional singer too. The surgeon, a top of the top considered surgeon.

Keep us updated,
dianne