Hello everyone,

I am new on this forum. I've been diagnosed with Thoracic Outlet Syndrome, specifically vascular TOS. I've had MAJOR symptoms and problems for many years now. I just turned 30 years old and I've had TOS since I was 21 or so and I've had serious, major symptoms since I was 24 or so. So it has been going on a long time.

I am about to have surgery on Dec 4 at UCLA. Actually, I had a first rib resection surgery that was done about five years ago. Many, but not all, of my symptoms returned after six months to a year. Recent imaging shows that my resected first rib grew back and is now causing compression again. The doctors are saying that this is one of the only times they have seen this phenomenon happen.

The first time they went in under my armpit. They resected the first rib but left the scalene muscles alone and the cervical rib (I have congenital cervical ribs). This time they will go in from the front and do a more thorough job removing the scalenes, cervical ribs and first rib.

I don't know how many of you are familiar with Dr Collins at UCLA but he is supposed to be one of the very best radiologists for diagnosing TOS. I've had two extensive workups with him and he clearly demonstrated compression of my subclavian veins and arteries and issues with my jugular veins as well.

I am working with a very good neurologist named Dr Agnew in Santa Barbara California. Unlike last time I had surgery, I will be extremely diligent working with him after surgery, doing physical therapy and making sure that the results last and I stay well.

What I am very concerned with though is the severity of the symptoms I am experiencing. It feels like I have a blood clot, an aneurysm, a pulmonary embolism, dissection or other life threatening problem. The issue is that I have been living with completely crippling vascular symptoms for FAR longer than I should have. I am worried that the tests that have been done have underestimated what is going on.

Frequently I feel as if I am going to have a stroke. Frequently I feel as if I can't breathe, I feel a pounding, throbbing sensation in my chest and neck while my hands feel cold and damp. My hands never get blue or anything like that, but my arms clearly get swollen and heavy.

In my chest I feel a pounding, swelling and it feels like I can't really take a deep breath.

In your experience, is it very important to know for sure if there is a blood clot, or damage to a vein or artery before they do surgery? I have had a great many tests and I assume they would have looked into most of these things, but I am still worried about it. I definitely trust Dr Gelabert (surgeon at UCLA) and the doctors who are helping me. I assume that if it is clearly a more extensive problem than they anticipated once the surgeon gets in and looks at my thoracic outlet, he will just modify his plans and fix whatever problems he sees?

Have any of you had blood clots, aneurysms or damage to the veins or arteries from long term TOS compression? How did you recover?

I appreciate the help.