I have vascular TOS on one side due to injury (fracture), repair, scarring, excessive calcification. Have been told rib to clavicle spacing is fine, not the problem. I have a history of strong keloid formation, this was not the first time it showed up.

Have seen a number of doctors, have received suggestions of just rib removal, don't touch anything else, remove rib, muscles, scars, rebuild clavicle (why? "we just do"), botox, arteriograms, venograms, been warned not to ever have surgery because of the scarring issues, been warned not to have surgery because I am showing characteristics of CRPS already, been working with a pt who has been doing a very good job of mostly holding it at bay, but am still slowly slipping downward. (Oh, and then there are the two local vascular surgeons (same office) who say it's not vascular at all, they don't believe the MRA, the CT, the ultrasounds, the symptoms....but we'll just forget them...)

I am in the Northeast, but location doesn't matter. Dr. D. in Boston is not an option. (Don't ask, I'm tired of telling, and it only upsets people. He is just not an option for me.) So who would you recommend, given that this is vascular, not neurogenic, traumatic origin, complicated by scarring, not anatomical, basically an atypical, difficult situation? I can go anywhere in the country if the situation will be right for me.

(I also have vision problems, making searching and reading old posts difficult, is why I am asking for leads instead of researching it myself.)