Originally Posted by ShaggyChic_1201

Hi Alison, you described the joy of TOS so well that I could tell you were a fellow sufferer. I also had both TOS & CRPS. After 9.5 hours of surgery to untangle 7 poor entrapped nerves, the artery and vein, and remove the middle scalene muscle, I came out of anesthesia hearing the surgeon saying, "well, that was the definition of a mess"

Like many, I had a hard time getting diagnosed with TOS, in part because all my arm pain was attributed to CRPS. Finally technology caught up with me and I was able to get a neurography, which is like an MRI for nerves. That was what definitively diagnosed the brachial plexux compressions. After years of being told it was in my head, or to push through the pain, finally there was a neurosurgeon saying, wow - you must be in agony. The 7 years it took for diagnosis made things such a mess.

It is now 8 years after that life altering surgery and I may be back in the same boat. As you said, the tendency for nerve compression increases, and I've already been unfortunate to have needed outpatient surgery to release nerves in my foot and both wrists. I am in a CRPS flare, but my symptoms could also herald the return of TOS.

I'm having my shoulder re-stabilized in the hopes that once the bones aren't rattling, everything might calm down.

Sorry - didn't mean to hijack thread.

OP - Since you are unsure of where the nerves are being compressed, I urge you to investigate the neurography. I'd offer suggestions, but my only experience is with Dr Aaron Filler and folks in San Diego. My data is outdated, so I will be researching to. Perhaps I'll post it if it's not already a sticky in the other forum. Best of luck and non-painful hugs (((U)))