This is the link someone gave me on my thread its like maybe three posts down. It has a list of Drs. grouped by states. Some of the links are outdated or missing a letter as I found out when some mail was returned to me with incorrect addresses lol. But it has some great Drs on it.

http://neurotalk.psychcentral.com/thread159707.html

I have had one vascular surgeon who was referred to me via my general practitioner- she had heard he was very good (but very far away) in Minnesota who specializes in cases like ours give me his opinion. I mailed him my test results and CDs from the initial ultrasound and the venogram. He said surgery would take 2 hours. Said I needed rib resection, scalene release and vein repair. Told me to stop taking my coumandin (which I do still take)
Our conversation was cut short and I didn't get any more details, yet.

I contacted another Dr. in Denver, whom I heard only positive things about on here. He was only too happy to offer advise and opinion to me. Very nice and personable man. If he wasn't so far away I would have gladly seen him in person. He gave me his opinion today (as much as he could without seeing me in person with only diagnostic test results, the paper documents, not the actual CDs) and no exam. He said the vein is shut but has discovered new pathways for the blood to go which almost makes up for the clot being there. I have never heard of this before, but what do I know. He said that is why I can see my veins more prominent on the right side of my chest and my upper right arm. He said I could live the rest of my life like this just fine. IF the vein decides to recannelize or reopen, then at that point I become the perfect candidate for another clot, and that's when something such as surgery should be done. He suggested another venogram in 2 months. He also said if my discomfort from TOS is very bad then that could warrant surgery and at that point they would repair my vein also- since they are already in there. My discomfort is not quite at that level yet, especially knowing now how uncomfortable recovery may be. So yes I have two very different opinions now, though both done strictly over the phone.

Sooooo, I heard about this other great Dr. in Baltimore at Johns Hopkins. Contacted her she was kind and helpful, put me through to her secretary only to find out neither the Dr or the hospital takes my insurance. Bummer.

After that, what I did was I entered my insurance name on google. Came up on their website. Looked under PROVIDER SEARCH. it asked me to put in what type I entered VASCULAR. I put in within 50 miles. Gave me a list of like 50 Drs. I just went through each one. Googled each name. Some names took me to their direct website which told a little about each dr and some sites listed their interests or specialty. There were a few that had "thorasic outlet syndrome or Pagett Schroetter" those Drs I called on. Out of about 50 there were 4 or so that specifically stated these interests. Those are the ones I called and first question I asked the receptionist is do they see many cases like mine and does the Dr know a lot about TOS and Pagett Schroetter. The three that said yes I made appointments with. I have one Nov. 3, one Nov 8, and one Nov 14. I will bring my CDs and paperwork and I'll tell them I'm there for 2nd opinions, and I wont tell them what the previous opinions are, so as not to sway them either way. It took me all afternoon to do this and I was ready for a glass of wine when I was done. lol

Yes from what I've read on here the post op doesnt sound fun. I have a little one too and am active in my 30s. I am looking to avoid surgery very much so, but if its necessary then I guess its necessary.

I hope this info helps in some way, and that I didnt overwhelm you at all.