Holles Don't give up. I was diagnosed after a clot in my subclavian vein moved to my lung. The first vascular surgeon I went to see said I had TOS but didnt do much in the way of test's for a more formal dx with all the facts. Check the doctors list above to find a Dr close to you. You might find that a neurologist useful also to check on the nerves as well. Good luck. Your not alone there are many of us who have been on the TOS round about.