Hey All,
Just found this site from talking to Ross. My story is have left side phrenic nerve damage for over year. Found out about month ago after many tests an to the point that my doctor said it maybe in my head. " Really" cant breath lying down, why cant I breath when I go tie shoe, my endurance very bad, not good when you are a fireman. They sent me home said live with it. I am 59 am ready to retire but not like this. In my research which only started in last few weeks as any one knows with this condition there is not many alternatives. Live with it or try very new procedures out there. Like what Ross did, or Bricko or Casey who fell off the end of world. Funny didnt hear from him after surgery if he even had it done. Bricko tell us more many people are waiting to hear. i am waiting for call from Dr Kaufaum to see if I qualify. He has only done this surgery 20 times I would say that is cutting edge. My GP thinks I should move a little slower, he dont have this problem. He says there is no documentation out there by this Doctor. Which I agree there should be some thing out by now about this procedure written by him. So confused here, If any other person had this done let talk. Thanks Nick

Hi Nick,
I just wondered if part of the phernic damage is a result of your job. The hoses are so heavy as is most equipment you used. Scar matter could have become an issues as is a stretch injury to the nerves.
The phernic nerve comes through the scalenes in the neck, I know fire guys like to keep fit by lifting weights along with all the work lifting.

This sounds like something work related. I would find someone able to recreate the symptoms to narrow down the cause.
TOS is a group of symptoms not one injury or diagx to cover all, but many individualized complex issues.

The chest wall against the ribs,, especially if you have a narrow opening between the first rib and collar bone, if there is muscle build up of the neck, a fall or injury to stretch the arm, much like zingers from football when the arm is caught and pulled back.

The inability to get a good breath also may be from the years of smoke and fumes. They damage the lungs and then when a contributing factor as the phernic nerve not getting the diaphragm going good can contribute.

Just throwing some other thoughts out there, But I would not accept one label on a complex issue/injury.

Welcome to the site there are many knowledgeable friends here with many different ways they have TOS or phernic nerve damage.
di

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

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

I have a friend who has the same problem as you and is having a horrible time breathing tonight...can you contact me via email**because I have questions for you? Thank you!

In November 2011, I had a sharp pain an inch above my belly button towards the middle of my abdomen below the left ribcage and then the next thing I know, I had a weird sensation a small degree of numbness near the left temporal area.

So later, as this pain subsides, the nerve dysfunction and the breathing problem (left dyspnea that exists below my left rib cage) began to gradually appear and I at first didn‘t notice my neck was affected until I could feel the stiffness (and the sensation of numbness was gone after my GP prescribed my with xanax but at times I would still feel a bit of weakness in my left temple because the left side of my neck felt stiffer).

After a bit of searching online, I am suspicious the spinous processes of my upper neck are the culprit. My hands can also feel them being a little abnormal, I can rub the affected areas against my fingers as if they grow to be little nodules ( i mean the left/right spinous processes) <(I'm not sure the exact terminologies.)

To me there is a possibility (to me) the origin is neurological and stems from a pinched/compressed nerve below my left rib cavity (towards the side) and it works its way towards the middle and to the back of my neck which I think is the case. Maybe what I experienced is a flaring of the phrenic nerve?

I do remember before I felt this nerve dysfunction and this
breathing problem that exist below my left rib cavity,


p.s. I am 19. I am from Hong Kong.
My MRI shows that

There are no significant visceral mass or other lesions seen in brain, head and NECK, thorax, abdomen and pelvis.
No evidence of left PHRENIC NERVE PALSY.

I should have a neck x-ray?

I have gotten my X Ray and the only abnormality the report says is I have mild scoliosis of the cervical spine convex to the right side. The only explanation I can think of is the somewhat unusual, kind of like 'bone inflammation' that I feel in the parts with the first facet joint that especially stiff at the part left to the spinous process.

And my suspicion of phrenic nerve damage still remains in question as I stated from the post before this. Anyone can exchange ideas about these kinds of issues via e-mail?? You can pm me your e-mail. That would be very nice.

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