Don't know where to begin help please
 

I guess I should start with my history. I have some unknown condition that causes me to have entrapped nerves. I have had four in my left foot, bilateral carpal tunnel, rt arm ulnar nerve, rt arm radial nerve, and my rt rotator cuff cleaned out. I have had all kinds of testing to no avail. I just seen to get inflammation all over then it settles into one area and then entrapped nerve. My Emg's never show too much nerve damage but because of all my symptoms they do surgery. Once they get into whatever body part they tell me afterward it was really bad in there......not what they expected at all. My last surgery was a radial tunnel release......wow that one we a tough one. My arm has had some issues ever since but much better than before surgery. That area started to hurt again. At first I thought it was just a flare....some inflammation. I started the normal course of ice and Advil. It wasn't working so I went to a stronger anti inflammatory still having pain and it was spreading up and down my arm. I was concerned maybe the surgery failed. Then I thought maybe another entrapped nerve in my shoulder blade. The neck really didn't cross my mind as the pain seemed to go up my arm. After trying every trick in the book I was still in pain. I went to my ortho and he did X-rays to look at my neck and shoulder. I was very surprised by the news. The first thing he said was you know there is something wrong here this entrapped nerve issue isn't normal......I think you need to go somewhere like the mayo clinic. Then he said all the pain I was describing pain in my hand, thumb, ring and pinkie fingers, forearm, elbow, back of upper arm, arm pit, shoulder, back, and chest was from all of my nerves being trapped in my neck. He told me I have the extra ribs and he feels I have thoracic outlet syndrome but he can't help me. He is sending me to a neurologist on Wednesday. I think he may very well be right as I seem to match up to everything I have read. I can only assume I am having all over pain because I have had so many previous surgeries in this arm. I am going to start pt even though it has never once helped to prevent surgery in the past. I have contacted a thoracic surgeon and they won't see you with out a definitive diagnosis. They did tell me I will need a angiogram ct scan and a nerve conduction test. I am in a lot of pain I can't find a comfortable position ever it seems like. I live in a rural area I hope these doctors don't send me round and round. I have been down this road before but not so many nerves affected at once. The surgery is very risky and the whole collapsed lung part freaks me out a little. Any advice you have would be greatly appreciated! Am I on the right path to get a definitive diagnosis?

Sounds like you're on the right path. Don't worry too much about a collapsed lung. That is actually a really common complication. I had both sides done at once and both lungs collapsed. I woke up breathing fine and didn't have any pain from it at all. If they hadn't told me it happened, I never would have known.
The surgery is risky, but if you're in that much pain and you're ready to go for it then it's the right move to make. Do a lot of research, make sure you have a fantastic and experienced surgeon, and ask a lot of questions!

Patty,

Surgery is each person's choice but if the quality of life is not liveable, then you might need to consider surgery. People who have bony abnormalities tend to fare better from surgery but this obviously depends on each person's case, the surgeon's ability, etc. I have had the surgery on both sides and had bony abnormalities both times (large bone growth on 1st rib (side 1), enlarged C7 transverse process and extra wide 1st rib (side 2)) and I'm glad to have done the surgeries. Given you live in a rural area, you need to consider traveling to see a qualified TOS surgeon and the surgeons are accustomed to dealing with patients traveling from out-of-state. What state do you live in?

The prior history of surgeries to that arm may impact the level of recovery which is why you really need to see a good TOS surgeon.

With the 1st surgery, I had the collapsed lung (pneumothorax) and complications with lung in the 2nd surgery. The doctors are aware of the potential complications and, in my experience, take any compliant seriously.

I live in GA Emory is an hour away. I guess I could have worded that better. It's just that the doctors in my area seem to work for the basics but if you have something's weird.....forget it! I will see the neuro up here if he laughs in my face I will go to ATL to try and get a diagnosis. Then hopefully to the thoracic surgeon. I don't want surgery but I also know the longer you wait the possibility of permanent damage is greater.