I was wondering if I can speak with someone who was diagnosed with strictly the arterial/venous TOS or who has the vascular and neurological form? I have been to several doctors who have been no help. I realize this is a support group and I am glad I found it but I notice its hard to talk to people who have the vascular form of TOS?

Anyone out there with vascular tos? If so, can you tell me your symptoms, how you were diagnosed, whether you had surgery, and what your doctor explained to you with stroke risk. The reason I am so overly concerned is because most of my pain is confined to my right temple and right neck and I know its my circulation that is causing this. I am not sure if I should be as worried as I am? I have researched exhaustively and cannot find anything on stroke risk. Perhaps its because I dont understand TOS so much and am not sure how fast the damage to vein happens... any advice or knowledge you can share, I would appreciate it. Thanks and hope everyone is feeling well.