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.

Thank you for sharing your story. I started getting left sided chest pain a few years before TOS came into the picture. I became concerned one night in particular and went to urgent care for an EKG, etc. All were normal and told I had Costochondritis, an inflammation of the costals where they connect into the sternum.

It would come and go over the next years and then TOS appeared along with constant costochondritis. From what I've seen on forums, this type of chest pain does seem to be a fairly common symptom. Was mine a harbinger of things to come?

I no longer have it and I think it's due to PT and breathing exercises, possible expanding the area and making the joints more mobile. When I did get the jolting pain above the heart, it did seem to be positional, but I don't think it was vascular related for me.

hi!

sorry i cant type much

i have eds and some version of tos but i have nto really had "chest pain" just pec major pain and spine pain. my ribs have burned when my spine is very irritated. my ulnar nerve is very irritated bc my shoulders arent stable (theyre hangin off my neck) and i have a lot of neural tension. my vascular sx are very mild in comparison. i am doing a lot of pt

people (LADIES should i say) who have eds i think are predisposed to tos. neck instability and shoulder instability just leads to tos, imho

Thanks for your reply. I don't talk about this much so it was nice to see so many quick replies. I am glad to hear that you have seen relief with PT and controlled breathing. That was definitely my first try. I think you are right that the instability of the neck and shoulders can influence the likelihood of it I just wish I could find more research on the connection!

Although, believe it or not the novel I wrote was the short version. My thoracic surgeon initially thought the pain was chostrochondritis as well. He tried to do a CT to rule out cancer and confirm. He did the test where he held my sternum basically and pushed in while I coughed. He could see discomfort so he still thought costrochondritis. I tried to say it was a totally different pain then what I was referring to. Eventually we figured it out and determined that was not the case. I'm glad you are doing better but if it comes back make sure you stand up for what you know about your body because I am so glad I did since that's not what I had. Did yours feel like extreme pressure towards the left side of your chest at times? It was a tough thing to describe because it felt more like being kicked my a horse or sat on than rather than a stabbing specific pain.

my ribs sublux all the time, im surprised i dont have chostrochondritis *knock on wood*

Thanks for the response Sarah21.

So my speculative theory is that if you have ATOS on the left side with a depressed shoulder, you are basically crimping your circulation close to your heart. Then you get the heart attack like symptoms since, in both cases, your heart is not getting enough oxygen.

I am familiar with costochondritis although I did not know what the name was for it until Anne4tos posted here. I developed it after TOS and I think possibly in response to extreme muscle spasms which were themselves in response to my ATOS episode from hell. Anyway the costochondritis pain and the artery backup pain are very different feelings. The artery problem is deep under the pec and/or under the sternum. The costo is right there at the sternum where the ribs connect. Besides location, the feel is just different.

Fun, fun, fun!

P.S. If you're in the Los Angeles area, it was Joyce Wilkinson PT who helped me with the costo. One session knocked out 80% of it.

intercostal pain

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.