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Originally Posted by Scaredsilly
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.  |
I was diagnosed with paget shroetter's in August of 2011. My symptoms started with a blood clot lodged in my subclavian vein. The pain that I was experiencing was mostly in my shoulder but radiated to my upper chest and into my neck. The risk of the blood clot being mobile (if you were to get one) are very slim, they tend to lodge in the scarred narrow area of the subclavian vein in your shoulder. I have done quite a bit of research online and discussed these issues with my surgeon and the pain in your temple wouldn't be considered abnormal.