Broken Wings,

I'm curious, do you have venous and arterial involvement as well as neurogenic? If so, do you ever get concerned about the possibility of vascular blockages?

I feel similar to Emmie, the more I learn about the surgery the less inclined I am to get it. Unfortunately like Emmie I have vascular involvement as well and don't know if I will end up having much of a choice.

It is hell to live with...

You do have to modify to a tolerable point. I guess that's an individual thing too.

like, damned-if-you-do-and-damned-if-you-don't feelings.

First cardiothoracic surgeon, in Lexington, Ky -- name escapes me right now -- performed a doppler. I stopped beeping when I raised my arms over my head on the doppler, bilaterally. He told me I had TOS and he did too. Offered bilateral rib resections only, six months apart. I asked him to do them at the same time... he gave me a funny look. I knew I was in trouble.

and BTW, he told me he would gladly cut me and fix me but he wouldn't testify for me. I thought that was funny because I hadn't asked him to and I expressed that to him and he said "It's always about the money." He did not examine scalenes, mention scalenes nor touch my pecs. That would have been such a failure. I'm so glad I didn't jump on the table for him. My pain level was 8, 9, 10 at that time. I was desperate but not that desperate.
From that, I gathered it was vascular.

My arms are cold. Keeping them fleece warm is an amazing treatment modality for pain relief.

I understood Dr. Atasoy to say the "cold" was because of neurogenic TOS. I then gathered I had both.

I also have cervical disc bulges and herniations, which are bad on paper but very good considering the improvement with PT and epidurals and other modalities.

No doctor ever gave me the impression mine was a lifethreatening condition. Concerned but no need to panic vibe.

I'm the one with anxiety. I'm the one feeling my pain, though.

I have told several health care providers that gave me an attitude, and I could stand up for myself that day, that if they were dealing with what I had to deal with here, they would not have their job. NO WAY would their boss put up with an employee with my problems. And then they had the worried look on their face for a moment.

Although I do know some degrees of TOS are lifethreatening, but that's usually diagnosed in the ER from injuries, usually severe and other areas of the body and immediately taken care of.

Or if extremities turn colors. Well, mine have turned a few colors but they were drug related incidences, trying to relieve TOS symptoms. And even those incidences, my good friend doctor, if I'd call him at home or go visit him again and again for problems with TOS, would ask if I had breathing issues and I said no, he would instruct me to take Benadryl and if I had to take a Tylenol just to take Benadryl with it. Actually, that was a pretty good cocktail the first time I tried it. I slept for 2 days. Or, I completely lost 2 days of my life.

As far as vascular blockage occurring now, nah, no worse than it ever has been and I lived through it. absent a new event, of course. I'm predisposed for -- oh, I don't even want to think about it.

I believe over the many years here I've actually sprouted some collateral blood vessels - known as angiogenesis. Here's a link for that: http://en.wikipedia.org/wiki/Angiogenesis

I think therapy played a role in that, and time, and LED and infrared lights, Kinesio tape, stretches, water....

I'm not aware of TOS being used as a "CAUSE OF DEATH" on a death certificate.

Although I'm just a lowly human and totally not worthy of His love, peace and comfort, I do believe in God. I'm not afraid to die.

I'm complicated by many factors. So I guard to protect my existing abilities and strive to become stronger. I want my own muscles to hold my bulges and herniation in for me. My scalenes won't allow me to tone up the neck right now. Seems like the more muscle mass I lose (not a lot but noticable), the less pain I have. not good for neck stability though. baby steps. will work on posture and lower body and abdomen. I'll get there. I'm such a work in progress.

pressing on...

I've ordered the CircleGlide from HSN and can use that at my workstation. It will help with my thighs and core. Right now, the gripping is not making me happy. I never started anything that I didn't have to struggle with at first. I won't give up. I'll work up to it.

here's a link for that: http://www.youtube.com/watch?v=s23phI-7FRM