Originally Posted by Laur3d

I think at this point we've all realized how unique we are and how uncommon TOS is. Many of us are better versed than many medical professionals. I actually had a resident call me an "urban legend" and med school myth. I really just wanted to say thanks to everyone who contributes, even though most of the time I don't comment. Besides the tips and advice it's a huge comfort to know you are not alone.

Here's my story in case is provides insight or comfort. I started having horrible pain in January in my left shoulder and back, which quickly encompassed everything from my sternum to left arm. I was (mis) diagnosed with rotator cuff tendinitis. Thinking back I realize I still had full range of motion, but they're supposed to be the experts! So, I went through 4 weeks of physical therapy- no improvement. Then March 2 I came home from work and felt a tingling I my left arm. I immediately felt it swelling. Within 4 minutes my entire arm from fingers to shoulder had swollen 3 times and turned completely blue. I could tell no blood was leaving my arm, but was rushing in. After an ambulance ride and night in the ER I was admitted to the hospital. There were two blood clots in my upper shoulder/chest region. Two days later they ran the catheter and balloon angioplasty. Two days after that I had my (first) first rib resection. I am 33 and we had no idea. It was not until this we discovered I've had TOS my whole life. My surgeon, who has been a God send, was able to see on my CT scan the problem. He could tell the scalene triangle was smaller than it should be. He immediately knew we were going into surgery. About 2 months later my right side started experiencing escalated symptoms as well. I know you are familiar with the pain I'm describing. I had the right first rib resection surgery May 2. They also stretched the tendon, which can be known to cause additional compression. These are two major traumas in a short period of time. While people will hope for a speedy recovery remember most of them have not gone through this. It's most important to listen to your body. There is scar tissue at the base of my neck from second surgery which has been causing lots of pain. My left side healed beautifully. Keep in mind every experience is different, as is every surgery and all pain. It is very real and has been a whirlwind life changing experience for me. I am back at work part-time now. I've been blessed to be on disability. I still have to manage my activities and know my boundaries. One event too many in a day can cause a severe flare up. My therapist has advised, while painful, this is actually a normal part of the healing process. I hope you all are well with less pain. I am here if I can help- or just listen. This site has done so much for me. Thanks

Originally Posted by Catalinagarciac

Laur3d, thank you for sharing your story!

I have VTOS also, but mine is afecting the artery, not the vein. My main symptom is the "white hand", it gets really pale several times a day. My hand does not recieve enough blood due to the arterial compression. As you, I also had clots, on three main arteries of my right arm, and I also had the surgery with the catheter and ballon. My VTOS is caused by a cervical rib, which I will have removed the 1st of Sept!! I am very optimistic about this surgery. I will tell you how it goes.

Originally Posted by chroma

Can you share what symptoms you experienced when you had clots in the arm? Also, how did they detect the cervical ribs? x-ray, ct scan, something else?

Thanks.