Hi I hope you are doing well. I met with Dr. Donohue near the end of Oct. He mentioned doing a ct scan first then botox injections. Did you have them as well? I was diagnosed by my primary care dr. and having a hard time finding someone to treat me. I live on Long Island. Any ideas? Thank you for your help!

I met a lady recently had surgery done in MGH by him some years ago. She had a injury to her nerve during procedure on right side with a useless arm. I would say unless you absolutely can't live without surgery, stay away from it. while complications are rare but when it happens it affect you for the rest of your life. another point is that in these teaching hospitals the residents do a lot of the procedures while they are monitored but the complication rates are much higher because they are really students that have never done these trying to perform complex procedures. I would request no resident or fellow presence for my procedure.

according to dr donahue, the botox can allow you to participate more fully in treatment to get the area to open up. you may be able to avoid surgery in this way.

Starlight17 I saw Dr. D 2 weeks ago and we discussed surgery. I'm confused as to when you wrote this. One date on the right of the page says 12/12 and on the left under your name it is July 2012. I would love to hear from you. We would do a scalenectomy, take out the first rib and then do the scar tissue. I have had TOS for 40 years and there will be a definite flare up for several months plus the nerve pain post surgery.

irisheyesmilin

Sorry for this post about MGH-but I feel it is necessary...My whole family just got back from MGH and we spent awhile there with the Dr.'s....

After the CT-Angiography with the arms up I was diagnosed with compression of the subclavian artery and Arterial TOS but the hospital failed to take this into consideration. Therefore since they wouldn't operate on me we recieved absolutely no care from MGH at all. Guess I will lose my hand and arm at a young age or need to seek out a vascular specialist for this condition...We are absolutely shocked as we flew the entire way across the country to see this specialist...As well, the reviews were excellent don;t let this hospital fool you. Be careful. Don't waste your time or your money traveling there if you can't tolerate Botox..

Anyone has questions e-mail me....

Did they recommend Physical therapy?

From everything I've read and studied, I would personally consider Dr. Thompson in ST Louis or John Hopkins. I haven't been to either one but from my research, I feel more comfortable with those than others. My vascular surgeon has already mentioned Dr. Thompson in St Louis.

For a vascular TOS surgeon I recommend dr Farid Gharagozloo, he is in Tucson AZ. He did both of my surgeries, I have arterial and venous TOS and currently recovering. The surgeries have relieved the compression.

What about with arms down ? anything?
What are your symptoms - You can make a new thread and we can discuss some ideas for you.
http://neurotalk.psychcentral.com/ne...newthread&f=24


There is a small % of the normal population that will lose pulse with arms up and they do not get TOS...
but sorting that out will depend on your symptoms and pain levels.

Did Donohue actually see you & your test results , or just the MGH hospital staff?

I don't know if he is actually on staff at MGH , or is affiliated and works with the hospital?

Thanks-They did recommend PT- but that had made the problem
worse for the past 2 years....We did conclude however that if the arms were not up-they wold not have seen the compression. My Dr. insisted the arms be up prior to anymore studies.

From everything I've read and studied, I would personally consider Dr. Thompson in ST Louis or John Hopkins. I haven't been to either one but from my research, I feel more comfortable with those than others. My vascular surgeon has already mentioned Dr. Thompson in St Louis.[/QUOTE]

I am waiting for my apt to be approved (insurance wise) with Dr. Thompson. It is a four hour drive but I am SOOO ready. I hope its soon. I will most certainly let the group know how it goes.