Quote:
Originally Posted by chroma
Thanks for sharing. And on this discussion forum, we love details, so no problems there. 
I don't have Ehlers Danlos, but do have TOS. A vascular MD diagnosed me, but told me that my chest pains couldn't be TOS, but I disagreed. If your subclavian artery shuts down then your circulation backs up and just like the neurologist said, you're not getting enough oxygen. I even had my heart cramp under my sternum. Not fun when you're in your 30's and not expecting something like that for another 30 - 40 years!
Your chest pains are gone after the surgery, right?
Mine went away when I started propping my arm up with pillows or books to get the shoulder girdle up and the collar bone away from the first rib. I could feel warm circulation come into my hand. Aaaaah, feels so good.
Like you, my bad side is the left side.
I'm curious about your shoulder symmetry. When you stand facing the mirror square, is one shoulder lower than the other, and which one? Well really I'm interested in what it was before the surgery.
There has to be a reason why some TOSers get chest pains from poor circulation and others do not. I have a speculative theory, but I'd like to hear more from you first on the above two questions. |
I hear you! I certainly didnt expect to deal with these issues in my teens and early twenties! But yes, my left side was lower than my right said Pre-op. I have scoliosis so my body is unfortunately far from symmetrical. Post-op it is even lower. I can't keep a bra strap on that side it will immediately fall off my shoulder if I move.
I'm glad you find some relief by changing your position. That definitely did help me at times. I'm sure the positioning of our shoulders plays a role in why some of us have chest pain and others don't based then on whether you have arterial or venous TOS. I have both which makes sense to me that I would have chest pain. They told me I was such a clear case of TOS which surprised me that some of the doctors didn't really think the chest pain was related. I think this is an area that has a lot of potential for research.