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.