Junior Member
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Join Date: Oct 2013
Location: RI
Posts: 9
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Junior Member
Join Date: Oct 2013
Location: RI
Posts: 9
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TOS referral
Quote:
Originally Posted by winic1
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.)
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I have traveled the same road tho I had surgery with Dr. D last week. Pec minor tenotomy. Had that option not worked, I would have gone to Washington University in St. Louis or Baylor...TOS is getting tons of press with overhead athletes now commonplace seeking treatment. Not sure why...many stories of missed diagnosis and poor care despite easily accessible medical info online. The suffering is real. The pain mimics stroke and MI symptoms and the second you get ruled out for both, docs and their staff can't get rid of you fast enough...only adding to the frustration and sadness in being disabled.
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