JPSF,

That's really interesting to hear, and troubling. Dr. Ellis, in Berkeley, has a theory that the nerves are "sick" and that they make the nerves nearby sick as well, which is why many of us experience TOS as progressive even though, technically, it's not supposed to be.

I had a high degree of confidence in Dr. Avery though I was skeptical of the surgery. I thought he was cautious, thorough, explained the difficulty of working in that area of the body and urged me to go into a different line of work since working as an attorney had caused or contributed to the problem in the first place. I didn't think he was wearing rose colored glasses about surgery. But it was hard to not try surgery when nothing else was working AND there was an 85% success rate.

I am still tempted to try re-do surgery because nothing else has worked and I would like there to be a solution. However, after 12 years of having my nerves going haywire, I'm not sure if surgery could ever work anyway. Dr. Avery said that vascular surgery was like unkinking a garden hose. Once you unkink it, it works fine. As for nerves, he said, "They can't take a joke."

I relate so to your statement that it's nice to not feel crazy, but there is no solution. I have felt that many times coming out of doctor's offices. I can't help but feel like surgery just isn't a good solution when it's success is so unpredictable. In any other profession, the powers that be would say, your approach just isn't good enough yet. I give Dr. Avery credit, at the very least, for being honest about the limitations of what he can offer. I hope you find something that will help you.

Take care,

Kelly

Since TOS isn't enough fun my son saw the pictures of Debbie Gibson 2 weeks ago all over the net. She came forward because she was getting bullied about her appearance and she wanted it known she had Lyme Disease.

I had a bite and a bulls-aye last January. It didn't really bother me but it was really ugly and lasted about 3 months. People would say you need to get that checked. I was 3 months post major shoulder surgery on the side I have major nerve damage and it was the least of my concerns.

It now explains why I have declined so rapidly. My pt's comment was that one evil or another but that this is better than my neck disintegrating and that was her concern. Lyme disease symptoms line up with TOS. It is another area where most doctors tell you nothing is wrong and insurance fights you every step of the way.

We thought getting a reason was going to be the light but looking at sites on the net make it clear it is as tough a battle as TOS. Crazy huh.

The other Bay Area doctor that is now listed for TOS is
Neil D Rudo
236 San Jose St
Salinas, Ca 93901
1-831-424-7389