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'm mostly VTOS with very little NTOS. Most of my head symptoms were caused by TMJD. Both my TMJD and TOS seem to be largely caused by muscle tension, although that may not be the whole picture.

I don't know the risk of stroke.

I always share my tips here so you can look through my posts. You need to start trying stuff like scalene stretches, first rib adjustments, relaxation audios, etc. to see if they help--provided you have already seen the appropriate health care providers to get all the correct tests.

Good luck.

How do you know your circulation is causing the pain? I have both Vascular and Neurogenic TOS. I also had a cervical fusion (ACDF) 1 year ago. Nerve pain & muscle tension can be a compounding cycle. I have had pain that I just knew was myofacial that turned out to be nerve pain or caused by nerve pain. I have pain like you describe on both sides but I believe it to be the neurogenic component, not vascular.

If I were you I would find a physician nearby with experience with both forms of TOS. Where are you located? Any university health systems in your area?

Make sure you check the sticky threads.

i have vascular tos. i asked my doc about stroke risk, and was told there is no risk. i have pain in my shoulder, neck, elbow, arm, hand, leg, low back, basicaly my right side.sometime i wake up with half my face numb. temple and neck pain would make me think stress or headache...all of which tos can contribute to. a lot of helpful people try to give me ways to ease the pain. vascular pain is hard to ease the only think i have found that help is to avoid EVERYTHING that cause me pain.
and people without tos dont seem to understand that. i am scheduled for a surgical consult. im not sure if i will have the surgery or not, but if im already miserable, how much worse could it get right? lol good luck to you

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.