Welcome Celi!

So sorry to hear of your ordeal. My situation is similar in the sence that I developed a blood clot in my subclavian vein (they called this 'effort thrombosis due to Thoracic Outlet Syndrome) and had surgery almost 8 months ago. However I just recently got my blood test results back and do not have any mutations or genetic abnormalies that otherwise caused the clotting and I never had any symptoms of TOS before my arm swelled due to the clot.

The good news is since you have venous TOS your chances of the surgery being sucessfull is pretty good. Mine was! I do not live in pain every day and although it takes awhile to recover from the surgery (took me about 8 weeks to feel really good and regain my strength) and I am back to my old self and am able to do just about anything I want. The only complication that I had was, during the rib resection surgery, the plan was to patch the subclavian vein - unfortuanatly my surgeon found the damage to the subclavian vein to great to just patch up and a stent could have collapsed in no time. I have since lost all blood flow through the subclavian vein, which was a big disapointment. However the other veins in the throacic outlet area have compensating well, not 100% but they are doing a good enough job of getting the blood out of my arm.

Again, even with the one major complication I had, I am pain free, sometimes the arm and the shoulder is a little uncomfortable, but I wouldnt use the word 'pain'. I am also able to once again do all the sports I love (mountain biking, snowboarding, skiing, etc.) and have no restrictions in my day to day activities.

Have they done a thombolysis and put you on heperin at the hospital? My immediate concern for you is the blood clot and if they have at least desolved it for now.

Let me know! And think positive!

Anna