Thoracic Outlet Syndrome Thoracic Outlet Syndrome/Brachial Plexopathy. In Memory Of DeAnne Marie.


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Old 01-02-2009, 12:31 AM #1
mfaber mfaber is offline
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Confused Scared to have TOS Surgey?

I have been dealing with Thoracic Outlet Syndrome for a year now and have been doing the doctor shuffle this whole time. I have had xrays,ct scans,emg,mris, I have tried pt twice wich only made it worse. I have seen 3 Orthopedics,1 Chiropractor, 1 Neurologist and a Pain Clinic. Everyone of them had a different diagnosis. I finally have been told I need to have a rib resection surgery to get rid of the pain. I have constant left shoulder,neck and clavicle pain with burning at all times long with numbness and tingling in arm,hand and face at times,sometimes I loose a pulse in my armpit depending on the way I have my arm positioned. My left arm hurts with daily activities along with even walking. This has been such a devastating injury and I would love to just feel normal again! I just can't believe how not to many doctors know to much about this injury ,don't they all study the same book, there has to be something in there about TOS. All my test came back normal besides my Emg showing I had a Long Thoracic Nerve Injury ands still no one was sure what to do with me. I had been told I have everything from ac joint sprain, rotator cuff tear,slap tear, one dr said maybe I just have depression,I couldn't wait to tell her my Emg result,give me a break! I have not worked since I had the injury and would love to get back to normal. Has anyone dealt with this injury and did you have the surgery? I would appreciate anyones feedback.
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Old 01-03-2009, 07:43 PM #2
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*bump*

mfarber is a new member. I copied her post from the New Members forum.
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Old 01-04-2009, 12:41 AM #3
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Hello & welcome,
Oh yes, it all sounds very familiar, sadly so...
It's one of those rare-ish hard to prove conditions.

We have various threads on surgery, helpful tips so look around until more come along to reply.
Have you found our sticky threads for useful info and Drs/PT listings?
useful-
http://neurotalk.psychcentral.com/thread84.html
dr/PT -
http://neurotalk.psychcentral.com/thread135.html
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Old 01-04-2009, 08:35 PM #4
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Hi,

I have had the surgery supraclavularly and had 1st rib and scalene removed in 2005. Would not trade the experience for anything in the world. I am very glad I did it. I also had vascular tos so it was important that I did have the surgery. I have cervical ribs and had an accident at work...I am an RN and lifted a pt up from a toilet (180lbs) basically all by myself with my arm under the patients armpit......felt a pop of muscles....now tos.....I digress....
I am glad I had the surgery in that I had 6mths free from pain!!!!!!!!!!!!!!!! I then went to PT and they totally buggered up the surgery!!!!!!!!!!!!!!!!!!!!
Boy was I ticked but would not trade the pain free and medication free time in for anything in the world. I'd even do it again....if it would remove the scar tissue.

feel free to PM me if you'd like to I'll be happy to answer specific questions about the surgery...it sure as hell was no walk in the park...it hurt like being run over by a truck or train..you get the picture....but it was well worth it!!!

take care,
love and hugs,
Victoria
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Old 01-05-2009, 09:03 AM #5
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I too found the diagnosing stage very troubling. I did not have surgery. Don't know if that was the right thing to do or the wrong thing. I had several doctors who would say "sorry you've got it, but don't do the surgery." It's just so hard to find the right things to help you get through the day. Keep an open mind and try to put things in perspective. It's not something that gets better on its own, although time will change things. Try to manage only what you have to. ask others to help with things that you can no longer do. I don't like asking but it may help others. Most people like to help. For now, accept it and be thankful for their assistance. It won't always be this way. Prayer also helped me through the darkness fo the A.M. hours.

Hang in there.

Quote:
Originally Posted by mfaber View Post
I have been dealing with Thoracic Outlet Syndrome for a year now and have been doing the doctor shuffle this whole time. I have had xrays,ct scans,emg,mris, I have tried pt twice wich only made it worse. I have seen 3 Orthopedics,1 Chiropractor, 1 Neurologist and a Pain Clinic. Everyone of them had a different diagnosis. I finally have been told I need to have a rib resection surgery to get rid of the pain. I have constant left shoulder,neck and clavicle pain with burning at all times long with numbness and tingling in arm,hand and face at times,sometimes I loose a pulse in my armpit depending on the way I have my arm positioned. My left arm hurts with daily activities along with even walking. This has been such a devastating injury and I would love to just feel normal again! I just can't believe how not to many doctors know to much about this injury ,don't they all study the same book, there has to be something in there about TOS. All my test came back normal besides my Emg showing I had a Long Thoracic Nerve Injury ands still no one was sure what to do with me. I had been told I have everything from ac joint sprain, rotator cuff tear,slap tear, one dr said maybe I just have depression,I couldn't wait to tell her my Emg result,give me a break! I have not worked since I had the injury and would love to get back to normal. Has anyone dealt with this injury and did you have the surgery? I would appreciate anyones feedback.
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