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Hi, I have only just come across this forum and would like to know if anyone else here suffers from vascular thoracic outlet syndrome? I have POTS and suspected EDS (waiting to see geneticist). I have been having severe shoulder and arm pain and have been diagnosed with VTOS as I have subclavian vein stenosis. Dr wants to do rib resection surgery but I am wondering if that will really help if this is caused by EDS. I live in Australia and have had many medical conditions for the last 25 years. I am now 40. Looking through this site I am having so many a-ha moments and connecting the dots to what is really wrong with my body. My 14 year old son is also suffering from terrible POTS symptoms at the moment and we need to find help for him.
I have thoracic outlet syndrome but couldn’t get a referral to investigate further. Was told to see a therapist. 😛
I never thought to link this into the overall picture as I was in a demoralizing job with high stress. I looked up vascular TOS specifically and the magical word popped up “thrombocytosis.”
You said yours was stenosis – but what is the cause of the stenosis? Doctors sometimes jump in and just *fix* or write a prescription and bypass the root. If it’s chronic low-grade illness-based muscle tension, then surgery doesn’t make sense. If all of your veins are narrowing (meaning it’s a vascular tension sort of issue), it would be worth getting a second opinion for sure.
Look up Thoracic outlet syndrome stretches. One makes me pass out in blissful agony – extend your arm and put your palm flat on a wall, either fingers up or fingers down. Again, I have almost no clue what I’m talking about as “connective tissue” and “collagen” never hit my radar ’till I hit this site. I figured it was ‘my fault’ for anxiety and tension.
I find I blame myself for a LOT of things (rough upbringing), and have been blaming myself for all aspects of this deteriorating health. It’s so crazy. I’ve noticed as I start to stand up for myself, I get an “aha!” as I realize some long-standing issue is also part of “it” – whatever is wrong with me. For instance, I knew, but somehow didn’t *get* this obvious one: since last summer, my sense of smell has been either gone, or I smell chemicals. A fresh load of laundry smells toxic to me, and I never thought it was related until I stopped blaming my diet for all the fungus issues I have (immune system is wasted). My prior doctors made me crazy lol.
Best of luck.
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