[Jamie617]

Hello Everyone,
I'm new to the forum and wondering if anyone here has been seen by any of the doctors at the mayo clinics for TOS symptoms? My neuro feels that this would be the best place for me to go. I have a left cervical rib which is causing extreme pain. Thank you.

Jamie

[Jomar]

Hi,
I just have time for a quick post tonite.
I don't recall anyone going to mayo lately, but I'm sure some might have..
I see they have TOS info on their site.
http://www.mayoclinic.com/health/tho...ur-appointment

here's our drs & PT listings sticky thread -
http://neurotalk.psychcentral.com/thread135.html
and our useful info sticky thread - tons of links, articles, polls, etc
http://neurotalk.psychcentral.com/thread84.html

[watsonsh]

I ahve heard that Mayo is not a top treatment center for TOS.

I think the tops are likely the Denver docs and then here in LA there are a few really good ones. I also believe there may be some at baylor in Texas.

Where are you located?

[(Broken Wings)]

Originally Posted by Shelley

I ahve heard that Mayo is not a top treatment center for TOS.

I think the tops are likely the Denver docs and then here in LA there are a few really good ones. I also believe there may be some at baylor in Texas.

Where are you located?

I would throw Dr. Atasoy's name in the hat. He's world renowned. He's located in Louisville, KY. I think he performs his surgeries at the Jewish Hospital. Very good hospital. I do believe in him. I just got to him too late and was, at that time, still very confused by Dr. Powell's statements to me, "that I did not have TOS, work hard on PT, God bless you."

Dr. Atasoy has guided me and been very patient with me. He has been correct in what he has told me. He's offered to be there anytime I need to talk to him. and he now will also say I'm not a surgical candidate. I've done well under his care. I get help and relief from his care and advice. I asked him questions. He gave me answers that are true for my conditions. He also asked questions. very intutitive person. It does make a difference what your doctors tell you to do or not to do. He's a great healer even though he would rather have done bilateral rib resections and scalenectomies.

I will provide more info on Dr. Atasoy if anyone wants it...

[Jamie617]

I live in Montana and we just do not have access to medical professionals here who are very voiced in TOS.

I did travel to Denver and met with Dr. Brantigan and he said that I am certainly a canidate for surgery.

I am 40 years old and really was fairly symptom free until about 4 years ago. It began, like so many of your stories, hand and wrist pain, elbow pain and then shoulder pain, followed by numbness, tingling, a frozen shoulder, much PT, numerous cortizone shots, and then a huge lump showing up on my neck which my GP thought was a tumor. A MRI confirmed that it was actually a cervical rib. I was so excited to finally have an answer until I learned that it was not so simple. I visited 6 doctors in our area, all of which were unable to help me before I took matters into my own hands and traveled to Denver.

I got lots of information from Dr. Brantigan, (finally) but I have a few other conditions with may complicate the surgery. I have epilepsy and another loose connective tissue syndrome. Both my husband and my nero. feel that it may be important for me to go to Mayo Clinic to have them take a look at the "Big Picture".

I am concerned that this is not the best place to have the surgery and was hoping for some first hand information. Thank you to anyone who may know anything.

Jamie

[watsonsh]

Sounds like Mayo is close to you and because of complications you might need a facility that can track multiple issues.

Given that I would actually say look into Johns Hopkins. They have top TOS odc there and can handle the other issues like Mayo. But I understand if it is not doable because of the distance.

Othersise you might try Los Angeles and UCLA. Dr Gelabert. UCLA is recognized for TOS and has top neuro and rheumy depts. A top teaching school is a good bet