@peteruble Wow, you sure have been through a lot. I do appreciate such a detailed post about your treatment history and symptoms. I think you need another opinion about thoracic outlet syndrome. I have TOS, and the activities that you describe that are problematic are all postural things that would increase TOS symptoms because of bending your head forward and elevating your arms. It is tough to find a doctor who really understands TOS and there are numerous compression points that can be involved other that the scalenes. One is under pec minor. One of the problems of any surgery is that is creates scar tissue in the fascia, and with TOS you already have scar tissue and tightness in the fascia, so that can make it worse. The treatment that I do which helps is myofascial release to get the fascia moving again, and to allow the body to be able to resume a normal ergonomic posture. A lot of providers talk about fascia, but do aggressive procedures that cause more fascial issues because the body braces against it or it creates more scar tissue. To release fascia properly takes a shearing force applied firmly but gently and you just wait until the fascia starts to slide. It's a cobweb network that has to change from a semisolid to a liquid. I think your doctor missed the diagnosis which is what usually happens with TOS. I was also told I didn't have it, but I did. My hand used to get blue and cold. It takes time and patience to begin to get better. You will learn things to do at home to self treat by laying on balls, etc.

Mayo is a great place to come for a TOS diagnosis. I came to Mayo Rochester for spine surgery, and they also confirmed my TOS diagnosis in a vascular lab with tiny blood pressure cuffs on each of my fingers and measured the change in blood pressure with different positions of my arm. A neurologist listened to my pulse disappear as I turned my head. I met with a vascular thoracic surgeon. I do physical therapy (long term) with an expert level physical therapist trained in the John Barnes methods. He is the therapist who started this method of treatment. You may want to look through our MFR discussion (link below). The first pages have lots of information links.

Here are some links that may be of interest.
https://mskneurology.com/how-truly-treat-thoracic-outlet-syndrome/
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/
MFR Therapist search http://mfrtherapists.com/

If you would like get a second opinion from Mayo Clinic, you can find the contact information for the Minnesota, Arizona and Florida campuses here http://mayocl.in/1mtmR63.

Healing TOS is a whole body approach and needs to get the fascia unstuck and moving again. It is concerning that two radial nerve surgeries did not help which makes this seem like a missed diagnosis for TOS. Those surgeries also created scar tissue that can add to the problem. Does a second opinion at Mayo Clinic Rochester sound like something you may consider? Have you tried the John Barnes approach for fascial release?