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thoracic disorder syndrome
it_is_what_it_is posted:
i was just told i have tos, i have had 8 surgery on my neck and shoulder due to an accident in91. normally they would remove the top rib to relive the compression, but because of my recognition of should and neck they cant. what they have suggested is doing a bypass. i don't want any more surgery so at this point i said no. dose any one know of any other treatment ? has any one lived long term with tos?
davedsel57 responded:

I've managed moderate to severe chronic back pain for over 30 years. While my whole spine has serious problems. I was born with a condition called hyperkyphosis. The middle - thoracic - section of my spine is excessively curved out ward. This has caused pain, tingling, difficulty bending and walking, and other problems and has gotten worse over the years.

I have never had surgery as I was told there is just too much going on with my spine. I also have other health problems that would put me at risk.

So, basically I guess I could say I have had TOS for over 30 years since my late teens/early 20's. You can read my story to see what methods I use for pain management.

I hope you can find effective ways for managing your pain as well.
Click on my user name or avatar picture to read my story. Blessings, Dave
Anon_12819 replied to davedsel57's response:
I think what the OP is referring to is thoracic outlet syndrome. It is primarily a vascular disorder and is usually treated by removal of the first rib which is not an option for the poster. The doctors are proposing to "reroute" the posters vascular system which is probably the only viable option.
davedsel57 replied to Anon_12819's response:
You are correct:

I have no misunderstanding here. I am simply sharing my own experiences, as the original poster has requested.
Click on my user name or avatar picture to read my story. Blessings, Dave
annette030 responded:
I would get at least one other opinion before deciding what to do. I was told many years ago I had thoracic outlet syndrome, turned out I must not have had it, because I never received any treatment and the pain drifted away. Ask the doctor what all your treatment options are, in addition to surgery. They are supposed to tell you. If it is not an emergency, think about it and talk to lots of doctors and others with TOS before you decide anything.

Ask the doctor if it can cause an emergency and what symptoms you need to be aware of in case that happens.

Take care, Annette
annette030 replied to davedsel57's response:
According to this article, and it goes along with what I knew already, it can be caused by an impingement of the blood vessels OR an impingement of the nerves. I was seeing a neuroligist when I was told I had it, he believed it was due to nerves being "trapped".

Take care, Annette
billyf27 replied to annette030's response:
I have TOS

. There is a lot of others here that offer a lot of help/
it_is_what_it_is replied to annette030's response:
yes, i had both test emg and cardio. the emg came bake neg. however the doctor that preformed it said that the nerve system has to be completely dead before it would show up. i test positive for the cardio. i saw a pt and i am going to being doing exercise designed to open/ take the pressure off the arteries, my surgeon that did the reconstruction dose not have high hopes for the pt. the cardio spec thinks that i should at least give it a try. (i agree) from what i have read about TOS besides the pain the only other risk is to the arm, i have not had use of that for 20 years. i don't want any more surgery, but if i have to i think i would rather loose the arm (so it cant cause me any more problems down the road. so if pt dose not work i think i will just wait it out and see what happens to the arm. thank for all your response.
it_is_what_it_is replied to davedsel57's response:
thanks dave you always give me hope.

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