New Member with TOS
 

Hello to all !!!

My name is Carrie. I was recently diagnosed with Thoracic Outlet Syndrome on the left side. My angiogram showed complete arterial and venous occlusion with arm abduction - and also nerve impingement, all caused by the clavicle and first rib butting up against each other.

My follow-up appointment with the vascular surgeon is not for two more days, but he did say after the procedure that the only way to fix it was to remove the first rib. This is very concerning as I am a wife and mother of five. I run too small businesses, one of which is a transcription service (typing, typing, typing!). From what I've read so far, this surgery is debilitating with an extensive recovery period - also, I may not ever be able to type again. IS THAT TRUE?

I realize that everyone's experience is different, but I'm trying to come to a general consensus in deciding whether or not to proceed with such a drastic measure. Dr. says the alternative is blood clot(s) and possibility of stroke and/or other life-threatening conditions.

Right now, my symptoms include moderate to severe shoulder pain, complete arm aching and heaviness, numbness and tingling in my hand (especially 3rd thru 5th digits), and weakness in that arm (also, pain when I life anything with it, or "tweak" it in the wrong direction).

Does anyone have a similar situation? I'd love to hear from you. Don't know who to talk to as my Dr. says the condition is relatively rare and, in fact, he refuses to perform the surgery because he doesn't have enough experience with it. He is referring me to another surgeon in Orange County (California). Does anyone have ideas for GREAT surgeons for TOS in that area (or L.A., Riverside, San Bernardino, or San Diego Counties)? I've heard there are good docs at UCLA for this, but don't know any names.

Looking forward to any and all responses,

Carrie

Hi Carrie,
Did you find our TOS forum yet?
I'll copy this first post of yours to it for you -
http://neurotalk.psychcentral.com/forum24.html.

Hi Carrie,

Welcome. :hug:

Several of us in the So Cal area see a neuro named Dr Sheldon Jordan in Santa Monica.

Some of the local surgeons are Dr Ahn, Dr Filler both private and Dr Gelabert at UCLA.

I see that Jo just gae you the link to the the TOS forum so I look forward to seeing you there.

:hug:
Shelley

Welcome to Neuro talk, you will find lots of helpful and kind people here, do not hesitate to post your questions, again welcome to NT

Hi, O2bponca...
 

I've had a few friends with TOS, but I've never really understood the condition myself. I hope that yours is not too bad. I am glad that you decided to check out our forum. It's a very friendly place, and there's a seperate forum for TOS. I'm sure the members there can help you out a lot.

Anyway, good luck and best of wishes, O2bponca! I will constantly wish that your problem finds a cure! :)

Hello and welcome to NeuroTalk. Great to see you have come to be with us. Just let us know if we can be of any help. We are all here to assist each other as possible.

Again welcome, looking forward to seeing you around.

Darlene :hug:

Thanks for the info!
 

Thank you so much for these doc names. Will make a note and check out the TOS forum right away. Have a great holiday!

Carrie

hello carrie ... as you can see ... there are lots of friendly and supportive people here ... although i do not have any answers for you, there are lots of people here who will have answers ... feel free to post and reply ... i hope to see you around ... again ...