Hey Di
I have no idea how this happened, but yes being a fireman in a big city an going to many fires sure didnt help my health. Yes the smoke we take in, all equipment we carry an we bang into thing, slip on ice, fall over things it does take its toll. The bottom line is I have this condition. Nick

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

Hey All, There is help out there for phrenic nerve damage. Thanks to Ross an Jerry 2 people that talked to me about Dr Kaufman. I was told by my pulminary Doctor to go home an live with it. I am sitting in hotel room in New Jersey just had surgery May 20 when I woke up after surgery it was like someone took a brick off my chest. Had some decompression from old injury done to nerve and a graft done from my serial nerve in leg. Just from decompression feel great relief. Hope to fly home tomorrow an looking forward to a better quality of life. Any one out there with phrenic nerve injuries there is hope. Nick

If you have phrenic nerve damage, would you have a decrease in oxygen saturation levels in your blood? Would it be possible to have damage or irritation and still have 100% saturation?

Interested in others experience with this test and true damage or significant irritation.

Anne

Jan 2011 I had surgery to remove a cyst off my pericardium. Recovery was wonderful until 5 days later when I had difficulty breathing. The Sniff test confirmed that I have a Paralyzed Right Diaphragm. It did show slight movement though.
Its been 5 months, and I think the nerve is healing (perhaps over zealous thinking). I keep trying to lay on my back without having pain or pressure, and some days I can for short periods of time. This week I was able to lie on my back for 1/2 hour comfortably. After training my lungs again, my oxygen level is almost normal so breathing is only difficult with heavy exertion. I have shortness of breath on climbing stairs and bending over. My main problem is sleeping. I can only get 2-3 hrs at a time before I wake up. And I sleep on one side, then turn to the other side. I do have reflux and Hiatal hernia due to the pressure from the diaphragm. I am only 52 and was very active prior to this.

It is nice to know that there is a procedure that can get the nerve working again. I will wait at least 16 months after surgery to look into this, as I prefer to give my body the chance to heal naturally. If the healing does not happen, then I will look into this procedure.

I saw your post and I think there could be a connection to sons problem. You mentioned you had a severed Phrenic nerve in your right arm. I did not even know that the Phrenic nerve was in that area. I am vrey curious now because my son who has a horrible breathing issue that causes him to gasp in for air all day and night long until he goes to sleep exhausted complains that his right arm hurts from time to time. I am trying to get someone to address my sons situation for what it is. The Neurologist doesn't believe this breathing isssue is related to his TS and is medicating him with different drugs. He believes that it is anxiety related which I can believe but not to the point that he cannot exhale without his diaphram catching his breath. If you are still here can you please tell me what you think from my experience. Thank you. Sarah

Hi just wondering how you are getting along, I have same issues cant breath go ballistic when they ask me to lay on my back as i can not breath. Been to 3 hospitals in same city, 3 different pulmanologists all went to same school same class all covering each others @$$. They said my sniff test was fine and lung would get better over 2 years later i did sniff test then repeat test blowing thru a straw which revealed paralysis.
3 Drs mad cause they did not authorize. reguardless they have no remedy and just told me to deal with it most people get along fine with just one lung/diaphram, i also take pain meds but they dont want me to use them cause they can suppress resperation??? cant even get them to do a phrenic emp test to see where problem is? Answer NO Nothing ever resolved sometimes i get severe nerve pain in my neck and my breathing seems normal not short of breath can walk/stairs etc most times difficult to walk to bathroom stay in bed 23 +hrs/day Pray!!! thats our only Hope

Hi David,

Can you please give me an update to your condition? I have phrenic nerve palsy from a scalenectomy, and I am having a hell of a time with this paralyzed diaphragm crap. I am 36 years old, and wondering what to do next. Plication may be one of my options, as it nerve reinivertion.

Thanks David,

Jeff

Hi,

I am curious to find out how you are doing? I suffered phrenic nerve damage in June of 2011 during a scalenectomy, and now have a completely paralyzed right side diaphragm. It has been rough on me, since I have a lot of trouble breathing now. The wheezing i have drives me nuts, as does the crackling. My father had severe emphysema and COPD, so I stayed away from cigarettes all my life since I saw the damage they did to him, and here I am now...Great!

I live in Canada, and finding a surgeon that does your procedure is not easy. I am working with an excellent team right not, too bad it took the medical system 5+ years to treat me though.

I have been told that diaphragm plication is one option for me, and nerve transplant is the other. How are you doing now? I have lost 40% of total lung volume based on tests from 2006 and post surgery 2011. Lying dpiwn is torture, my wife sometimes ties my shoes. I am turning 37 on Sunday, and devastated about all of this. I have a 2 year old son that I was looking forward to playing sports with, but that's not an option right now. I want to have the surgery soon, but at the same time, I want to make sure I proceed with the right one, if I am given the choice.

Thanks for your help....

Jeff

Can Ross be reached in any way?
Thank you,

Jeff