Originally Posted by finz
I am one of the TOS/RSD/fibro combos. There are quite a few of us, as JoMar mentioned.
I have neuro TOS. I spent several years being pooh-poohed, being told it was all in my head, with the only treatment offered being PT with weightlifting that made everything so much worse. Years of spending 12 to 16 hours a day with ice on the area trying to numb it to get some relief.
About 4 years into my struggle, after finding this forum and suspecting my issue was TOS, I founf a vasc surgeon who made the dx and sent me to a neurologist to start me off with appropriate conservative treatment, including PT with myofascial release. That made a critical difference in my L arm symptoms and with my arm and neck range of motion. No surgery needed....woo hoo ! Now I can do gentle stretching to keep my ROM. As long as I don't overdo things (and even routine housework or grocery shopping is overdoing things), my L arm is okay. Unfortunately, I was left with what feels like a burning golfball just to the left of T1, RSD, and fibro.
I'm glad you did not have surgery for neuro TOS. I did not have that singular variety of TOS unfortunately as my blood vessels were being pinched or rather, quite vehemently squashed, by the rather large first rib and bands of fibrosis and other areas of impingement.
I had every diagnostic exam/test available to rule out or rule in TOS. I also saw and got treated by and am still being seen by a neurologist and saw 4 Physical therapists. My hatchet knife pain that was 10/10 above my scapula was not going away, because it was pain from a pinched/squashed nerve. Every diagnostic test was confirmatory for TOS in my situation, it was not a mystery that took a long time to diagnose in my situation, it was very obvious in my situation. I did not have mild TOS disease. If I had the means to have had the surgery earlier, I believe my outcome would have been better. I had to go for too long with damage and fat displacement around the brachial plexus nerves in numerous places. Fat around nerves is protective as you may know.
I don't like posting in forums because I don't like having my personal health history or decisions questioned or attacked or criticized. Everyone is unique and hopefully they make the best decision that is best for them! :-)
I made the right decision for my body. That is the best that each of us can do. It is only the evil insurance people who criticize because they are the penny pinchers who are paid to do that.