Hi Everyone,

I am 23 now and was diagnosed with TOS when I was in junior high school. I dealt with it for years and as far as I knew at that time the only treatment was physical therapy, which I did. My arms would tingle, go numb, turn blueish, feel disconnected, and be painful. The left side became worse as time went on. I have had knee issues since as long as I can remember and have had surgery on both knees. My shoulders also subluxate and my jaw does as well. Needless to say I was a little preoccupied so I didn't pay much attention to my TOS. I was finally diagnosed in the last year or so with Ehlers Danlos syndrome, the hypermobility type. This is a genetic mutation where your body does not produce enough collagen. There are many times of Ehlers Danlos, but I have the type that mainly affects your joints so that your musles are too lax, you have joint pain, and your joins slip out of place or dislocate easily. This type also affects organ walls and can cause you to bruise easily and have sometimes very fair fragile skin. This is a fairly rare condition as is thoracic outlet syndrome but it was nice to finally have a diagnosis because I always felt like I had so many issues that seemed to be unrelated and I thought I was going crazy.

A few years back I started getting random chest pain when I would wash my hair. It was not too bad and I again felt kind of crazy with this random chest pain. It got a little worse and I realized that the chest pain only happened when I had my arms up so I casually adjust life to never really have my arms up. I flipped my head over to wash my hair etc. However, the pain started to get much worse and started happening when I just lifted my arms at all. I continued to ignore it thinking who is going to be able to figure this one out (except of course Dr. House, who unfortunately is not real). Finally it got so bad that I almost called an ambulance during an attack because it wasn't stopping and just felt like a horse was repeatedly kicking my in the chest and my left arm would be symptomic. This kept up so I thought it was time to say something. I told my primary care physician since it was rapidly picking up in frequency. She said she thought it was probably nothing but she would do an EKG. I figured the EKG wouldn't show anything so I was calm. It showed I had an arrythmia and she told me I needed to see a cardiologist by the end of the week.

Luckily my mom is a nurse and got my in with a good cardiologist. I saw him and he said he was going to do further testing but he believed the chest pain was related to the TOS. He ordered non-invasive vascular studies and had me where a Holter monitor for a day. The studies were pretty clearly showing my TOS, worse on the left side. The doctor said he wanted to then do an MRA to see what we were dealing with and that he was hoping he could just have his partner put in a stent to open up the blood vessel to stop this from happening. He said worst case scenario I may need a first rib resection but he didn't think that was likely. I went ahead and had the MRA. Meanwhile, I had just graduated early and was looking for a job. The same day that I got my first job offer, at the job I wanted, I got a call from the doctor saying I needed a first rib resection. I asked if this was something I could put off for a bit so I could start working. He told me it was not an emergency where I needed to come in right away but that I did need to get it done as soon as possible.

What a roller coaster from there, I saw his partner a interventional cardiologist, which I believe was only because I was an interesting case since a few other doctors came in to check this out. That's when they told me I was lucky to live near Boston or they would be flying me out to get a surgeon there. Off to Boston I went. The thoracic surgeon said that he hadn't seen chest pain as a symptom of TOS so that concerned him a bit. He had me see a neurologist. I did so and he confirmed that the chest pain was a result of my TOS and was likely from everything crying out for oxygen when the blood flow is cut off.

I went back to the thoracic surgery and was booked for the next available surgery. To make my what is turning out to be long story short, I had my left first rib resection, my lung did collapse, and I was in the hospital for 4 days. The next six weeks were long, hard, and painful and due to my chronic joint pain I usually have a high tolerance. After those first few weeks thing have really turned around, all of my symptoms, including the severe chest pain that I was having many times a day, have all subsided. My arm feels like a part of my body again. I do have some loss/change of sensation on the inside of my arm, which I was told might happen since my surgeon went in under my armpit (amazing what he could). I am okay with this entirely for the amazing results I am seeing.

I apologize if you did not want all that detail but before surgery I found myself reading these things and having so many questions so I tried to make the information available. I am wondering if anyone else has had similar issues, whether it be having chest pain/tightness and having TOS or having Ehlers Danlos too? Since all of these things are so rare I'm trying to figure out if there is any correlation or if anyone else had experienced chest pain since it is listed in a very small amount of literature as a symptom? Any insight would be appreciated since I am curious. If anyone has any other questions about the surgery/recovery or anything please don't hesitate to ask because I found reading things online before surgery to be helpful. Hope I didn't bore anyone! Also, if anyone is looking for a great surgeon I would be more than happy to share a name with you. He is not exactly Mr. Friendly for sure but he is an excellent surgeon and I am extremely satisfied with my surgery.

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

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.

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 have Ehlers-danlos Syndrome and believe I have TOS. Since EDS is a genetic connective tissue disorder caused by a defective collagen gene, it makes perfect since. I read that TOS is often caused by tissues, muscles, and bone compressing the nerves and blood flow. And that treatment included physical therapy to stretch out those tight tissues and muscles. Well I believe in the case with EDS, stretching out will not help us as the cause of our TOS is due to excessively stretched out ligaments causing our shoulder joint to drop and compression of the Thoracic space is causing compressed nerves and restricts blood flow. This may be why chest pain is another anomaly.... EDSers have issues with all our connective tissues being laxed such as the connective tissues between the ribs. Our vessels and arteries also balloon under pressure such as blood pooling due to gravity. Lots to think about. Doctors need to look for Zebras when they hear hoof beats
My brother was recently hospitalized due to a huge blood clot between his colar bone and upper rib. His symptoms began after doing pull-ups. The ER doctor told him it was from smoking! The doctor never even considered TOS or EDS. My brother was put on blood thinners to disolve the clot. Since the cause was not addressed, this is bound to happen again. I have numbnesa, discoloration in my arms, Raynaud's, and autoimmune disorders. If I wear a back pack, my arms will turn purple. Many EDSers in online support groups have numbness and Raynaud symptoms and all though there could be many causes such as autoimmune disease and Chiari, it could also be from TOS!