Can I add just a few more thoughts??
I had the surgery done with Dr.Schneider going in with the idea of doing/removing as little as possible. He ended up taking the rib as well as the 1st and 2nd scalenes; the rib because he wasn't able to get the amount of space he wanted (my subclavien was compressed also) and both scalenes as the nerves were so intertwined that he was unable to save them.
I am glad that I chose to have the surgery, because I was in so much pain, I didn't think I could go on living that way. I still have severe limitations, but the pain at least is managable.
If I were able to take the pain, I think I would have waited, hoping for a new, less invasive, surgical technique, or hopefully something that didn't require surgery at all.
Since my surgery I met someone at Kaiser (by chance!! I couldn't believe it!) who developed a clot in her arm from her TOS and had it dissolved in the hospital; she still had not had surgery. She was holding out as long as she could.
The other thought I have is what is the likelihood of you getting RSD/CRPS on top of everything else after all of your surgeries?
And I do think Di is right about trying to allow your body to have time to heal after all that it has been through, at least for as long as you can before you tackle something else so major.
Has anyone suggested a long term daily p.t. program like Peter Edglow's or Sharon Butler's that focus on gentle stretches and treatments that open the passageway and hopefully can relieve the compression that way? Dr. Ellis had me do Edglow's program for 6 mos. (Edglow asks you to commit to a year to a year and a half) to see if I could get some more space that way to avoid surgery. I made some progress, but not enough. I didn't feel like I could take the swelling tightness and pain any longer.
Anyway, I hope that you are doing better now that some of your other difficult health concerns are behind you.