Originally Posted by pixified

Hey everyone. I went to get a second opinion about my TOS yesterday and had some additional testing done. The positional ultrasound of my veins showed that laying down they are perfectly fine, but when I just sit up (with my arms at my sides), very little blood gets through them. When I raise my arms to 90 degrees they are totally shut. A CT also showed that my arteries are starting to narrow at the thoracic outlet and dilate on the other side. The surgeon wasn't concerned about the veins and assured me I won't get a clot. He said I shouldn't pay attention to the tests, that is his job, and that my symptoms aren't worrisome enough (I have some hand swelling and small visible veins on my shoulder). He also said the artery damage isn't significant right now and that it is a slow degenerative process.

He sees a lot of patients for this and has done hundreds of surgeries. He also takes an individualized approach to surgery based on what each patient needs. I am seeing him in 6 weeks to follow up and if my symptoms are worse we can discuss surgery. I have bilateral TOS so I'll have to have 2 separate surgeries if I decide to do it!

I am totally terrified that I am definitely going to get a clot or develop and aneurysm, and personally I feel like my situation is urgent, but don't know what to do at this point. Do I get a third opinion, or try to stay calm and wait for the 6 week appointment? I mean regardless of what I do I will have to wait at least some length of time for the surgery. I am starting to feel totally hopeless and like a ticking time bomb. I just don't know what to do. I mean the fact that I will have to at some point have two invasive surgeries that require a long recovery process is scary enough, but the severity of my situation is more than I know how to handle.