Just wanted to share some of my observations:
My adhesions (or whatever they are) seem to be above the muscle --- in the fat tissue and/or skin layer. It appears that they cause the tightness during flares (I think they entrap superficial nerves/ fascia/ and skin). Also, the tightness seems to be more from the fascia/fat/skin and not the muscle. The muscle spasms seem to be secondary to the "fascia" problem. For example, I have noticed there are superficial nerves above the muscle (just below the skin) that seem to get trapped/stuck. By dealing with the adhesions, I seem to be unsticking these superficial nerves as well as the fascia/etc. Also, if I pinch a tender area above the muscle (in the skin/fascia), the muscle will twitch and release. After I have released and unstuck many things, I am able to do the doorway stretch and I can feel the fascia/superficial nerves/skin unsticking --- I can feel it all the way from my forearm, up my neck, and to my ear. To me, this explains why my nerve tests were negative -- because my TOS seems to primarily be a problem with the superficial nerves below the skin. This was also suggested by Dr. Donahue --- that perhaps TOS is a small fiber neuropathy. (I also wonder if the reason my hand gets red is due to irritation of these superficial nerves and has less to do with larger nerves like the ulnar and median). Perhaps these superficial nerves get irritated and then spit out cytokines and cause things in the fascia/skin to start sticking together. The longer this goes on, the more things get stuck together. Eventually, stretching, etc is not enough to unstick things. Thus the need for Graston and myofascial release, etc.
See this link on the connection between fascia and muscle http://www.ideafit.com/fitness-library/fascial-fitness
I will be getting an appointment with a neurosurgeon to see what he/she thinks. I had an appointment with Dr. Brown, but my insurance didn't cover it and it was going to cost $400 just to ask him what he thought of my adhesions.
After the neurosurgeon, I will ask Dr. Sampson in Santa Monica what he thinks. There are some things for these adhesions I would like to try --- steroid injection, kenalog, etc (maybe PRP). Also, there is 5-FU which could be used with/after TOS surgery to reduce scar tissue. Dr. Elliot Jacobs provides some info about scar tissue on the internet.