Thank you so much! I think you might have already given me those names, but I had forgotten. I'll definitely see if I can somehow get referred to at least consult with them. Did you already tell me the names in Denver? I'll check back to the other post. I didn't think they'd talk to me on the phone about it - that's cool.

UCLA isn't really that far considering what it's for - even Denver is close enough, huh? Will let you know what I find out.

I think the denver doc that will do a phone consult is Dr Richard Sanders. THere may be contact informatin for him up in the stickies above.

Will probably be easier to get a consult with Dr Ahn before Dr Gelabert. UCLA can be a lng wait

Hey gals,
if she has copies of her films, test results & reports can she send them to the any of Denver guys?
So they actually have something to look at?

I can't remember if that was done by some in the past, to get a little more info from the docs there before making a trip.

yeah Jo I think several people sent their reports to Sanders for a consult. Great idea

o2bponca-
sorry to hear that there's so much going on. it is overwhelming! I was referred to a thoracic vascular surgeon by my pain mgmt doc (who is a neurologist also) to get his opinon on surgery. He thought it might help, but was hesitant to recommend surgery for me b/c the problem seems to be neurologic. I saw him about a year later for a follow-up, and we came to the same conclusion (for now) that non-surgical treatment is a better alternative for me. ANyways, to answer your question, a thoracic-vascular surgeon is just a doc that specializes in this region of the body. When the doc i saw would operate on a TOS patient, he would operate in conjunction with a neurosurgeon.

good luck.... there is lots of good information around here, and welcome!

I have had three surgeries (two rib resections and one scalenectomy) with Dr Ahn and really like him a lot. Very technical, very smart. Don't let them send you to his junior partner- see HIM. One of the very best in TOS surgery in the country, right here in our own back yard. Don't miss the opportunity.

Dr Sam Ahn
University Vasular
1082 Glendon Avenue
Los Angeles, CA 90024
(310) 209-2113

Vascular cases often have better prognosis for recovery than neurological. ihaven't read up on your situation too much, but that is a general rule of thumb...of course there are no guarantees in life and all....

Good luck

Johanna

Hi Johanna -

Thank you for your post - will check into Dr. Ahn. Still hoping, by some miracle, that a doc will say I don't need surgery, but I just don't know. I'll still go see Dr. Ballard at St. Joseph in Orange on Tuesday just to see what he says. Depending on that, I may have to "pick your brain" for your surgery experiences. Are you "healed" ???

Carrie

Carrie- "healed" is a relataively vague term. A 'successful' TOS surgery as commonly defined by the surgeons, is one in which your symptoms inmprove by 50%. I think for most people with neuro symptoms, you try to live with it and then when you can't any more, you opt to try surgery. In my case, I have absolutely no regrets, and I knew i would never be able to accept that level of pain and function without trying surgery.

My 3 surgeries all offered me some improvement, especially the first one, but I would hardly call myself cured. I have remained out of work since that first one, about a year and a half ago. If I didn't have small kids and good disability insurance, maybe that would be different, but at best i might be working 50% of my previous hours. Some of the very worst pains have gone, but my back, which is really prone to spasm, is unchanged. This is my most limiting factor. My arms are actually pretty good, now. My arms used to be the first limiting factor, then my back...now it is the other way around.

I have since gotten an additional DX of fibromyalgia, but I do not really know if i had it before surgery or not. I definitely had a thyroid problem that i didn't find until after surgery. I am still thinking that someday i may have a 4th surgery (scalenectomy on the other side) because it seemed to help my back, but I worry that i am tempting fate...having had three good ones, and there is no guarantee it would help. All in all, though, getting thorugh the surgeries is a cake walk compared to living in pain every day...

I did all this knowing I had an excellent, experienced surgeon.....which also helped. Dr Ahn will be very straight with you about what improvement you could expect to achieve.

happy to talk more any time...just PM me.
Johanna

So, any word on Dr. Ballard's thoughts?