Would love to hear from anyone with true vascular TOS who has had rib resection surgery to help me know what to expect.

Was diagnosed with vascular TOS several months ago. It has progressively and steadily become worse. Nerve pain is adequately controlled with Baclofen, but blood flow continues to be a problem. Have several venous collaterals formed (and more popping up all the time) from wrist, over shoulder, and across chest. Have no radial or brachial pulse from 90 degrees on up (and in some other constrictive positions - like pulled in against my chest).

Would do everything possible to avoid surgery, but doc feels a blood clot will soon be imminent. At last checkup, bilateral BP's showed 150/104 on right and 128/88 on left (more affected side). After cuff was removed from left, wrist and hand turned dark purple for 2+ minutes with venous distention all the way through tips of fingers. He is afraid that next time, blood flow may not restore on its own.

Not to minimize neurogenic TOS in the slightest, but if you've been diagnosed with vascular TOS (arterial, venous, or both) and have had the surgery, I'd love to hear your pre-op, peri-op, and post-op story. Nervous as heck and don't know what exactly to expect because this type of TOS is rare and not well documented.

Thank you so much!

Fellow TOS'er, Carrie