I started with sharp, stabbing pains in my sternum and the ability to pop my ribs from my sternum, then I had my left hand change color (blue veins) and pain in my last two fingers. That was three and a half years ago, and after the problem became so bad--i.e. sharp pains up my neck and palpitations, I went through a battery of testing to see if it was my heart. All tests were negative, except that the occasional arrhythmia was detected, but not enough to even be treated. I found that using a neck and back brace sometimes helps, and that I have TOS on both sides of my body (although worse on my left side) after a vascular test. My heart rate is good, my veins are supposedly perfect, and my blood pressure is low to low normal on both sides of my body.

I'm so frustrated because, after years of being tested for everything from a pulmonary embolism to heart problems, I finally saw a vascular specialist who said it was TOS but that no one in Orlando treats it. Now I'm supposed to go out of network and pay for care and testing several hours from my home. How can this be my only option? Does anyone know of someone who sees patients for TOS in Central Florida? Also, has anyone else had palpitations from TOS? I'm still not sure if that's what I have and I don't know where to go from here.