Originally Posted by vthomas
SO I have a question for y'all...
Since you guys have been successful and I am just starting in the process of PT and I refuse to even let the option of surgery come into play. My PT has lots of TOS experience but says I have the worse flares he has ever seen especially for my age I am only 24. We can't even get to working my muscles my nerves are so inflamed and tight. Did any of y'all start at this point?
I was where you were earlier this year. I had a cervical fusion surgery last year and I did not want any more surgery!
Like you, I became so inflamed and tight that therapy was not helping. When I started getting even worse from therapy, I found therapists who specialized in TOS and keeping folks out of surgery (Drs. Ando & Spousa). Unfortunately, they were not able to improve me (my 1st rib would not budge) and surgery became my last resort.
When I started consulting vascular surgeons, I learned that I had arterial compression in the stick-em-up position and venous compression with my arms overhead (positions I had been exercising in recovering from my cervical fusion). In surgery, the surgeon found that the costoclavicular space was extremely narrow. I had a ton of scar tissue and the brachial plexus was actually fused to the rib and had to be surgically separated and repaired (neurolysis). No amount of conservative treatment would have reversed this. I am getting back to my normal self because of both surgery and therapy.
My point to this long post is that avoiding surgery at all costs is the right approach. However, sometimes surgery is necessary and you need to do your due diligence regarding your condition and explore all avenues. You have to be your own advocate in researching and navigating this journey. Every case of TOS is unique in some or many ways, so you can't simply follow someone else's path.