Hello, I am so happy to have found this forum, and I apologize for the long post...
I am a 47 year old female who has been having symptoms of TOS since about age 10. My main symptoms had been bulging veins and change in color of my left hand and arm when I would do activities such as play piano, do dishes, etc. These symptoms never bothered me much and would disappear as soon as I would shake my arm out, and often would disappear for months at a time.

Earlier this year, the symptoms started coming on more often and with more severity to the point where my arm was almost constantly affected. I decided to go and have things checked out and was admitted into ICU due to having a large clot in my subclavian vein.

The attending Dr. broke up the clot and placed in a stent which "crushed" in less than two weeks being that it was placed between my first rib and clavicle. I decided at that point to see another physician who then weaned me off the blood thinners and said that my condition was mostly uncomfortable and not considered life threatening. Never was the condition Thoracic Outlet Syndrome mentioned to me by either doctor.

Six months later, my symptoms came back full force. Again, I was admitted to the hospital with a large clot in my subclavian where the stent was placed. This time I found a vascular surgeon who explained to me what was causing the clotting and his recommendation is decompression surgery via the supraclavicular approach. The clot has been broken up and I am currently on Lovenox while waiting to make my decision.

I decided to get a second opinion and saw Dr. Hugh Gelabert at UCLA. His approach is the transaxillary approach. I liked the fact that Dr. Gelabert has done so many of these surgeries, well over 950, and he was very calming and reassuring.

I have no pain whatsoever (with the exception of a burning due to the stent pressing on my clavicle), and being on the blood thinner, I am symptom free. I am super fearful of nerve damage during the surgery that will make my quality of life worse.

Can anyone give me input as to the success rates of the two different approaches? Also, I am totally open to seeing if there is therapy I could do to avoid surgery altogether. I do have TMJ and was also told by Dr. Gelabert that my posture and shoulder height is not symmetrical. Finally, would remaining on blood thinners long term be harmful? I am active and want to maintain my lifestyle.

Any input would be so greatly appreciated!