Thoracic Outlet Syndrome Support Group

Thoracic outlet syndrome (TOS) consists of a group of distinct disorders that affect the nerves in the brachial plexus (nerves that pass into the arms from the neck) and various nerves and blood vessels between the base of the neck and armpit.

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sj1953 01/21/2018

Hi. I am new to the group. I was just told 2 months ago I have Thoracic outlet syndrom. They did balloon going though my leg. It helped for about a week now hurting again. I have read about it and still little confused. Wanted to see if anyone else had same Symptoms I been having. I have had Migraines in back of head for about 20 years. Will get really bad when try to lay downI had Carpal tunnel surgery on both hands. And sharp pain on left side of my neck for about a year. In October Starting getting worse I would get dizzy lightheaded Would have to sit down really quick even if it is on the side of the sidewalk until I got my balance then it got to where I would actually black out for a few sec. my left arm hurt so bad and chest hurt I will start shaking and arms jerks on it’s on. Really scary thing. My husband said I will have jerks in my sleep.I can hear my heart beat on one side of head same Sadie head ache is They sent me to heart doc and Neroligist and did see small mass in head and thinning blood vessels in my head they did other test and that is when they said TOS. Sent me Vascular surgeon and he did the ballon. He said both sides of my neck was really bad and other places. Like I said did good for about week no head ache o heart beating in my ear hands not could or hurting and no jerks awake or asleep. But then it all came back slowly but now all is back. My doctor did test again and said yes it is bad but wants me to do PT and if does not work will do surgery. But PT makes it hurt worse and I can not do it. I am scared of surgery just seems like it is really bad and want to make sure that I really have this and it will work b4 going though all that. Has anyone had the same symptoms I am having and what helped you. I can not keep this up. I am only 45 and if I do just about anything I am in pain and all symptoms come back. I was hanging a picture above my head the other day and got so light headed and dizzy almost feel off the ladder: I am normally very active and going nonstop but now I can not

Imlosingit 04/01/2018

I think you have something else going on in combo with your TOS. I have had similar symptoms that you described. I usually get brain fog also. Though I never blacked out. But have sat on sidewalks.

Imlosingit 04/01/2018

I believe you, me, have Nerves being pinched somewhere. For me, I have had to many other overlapping injuries after being diagnosed, so I’m not able to find out. Was told to trail and error my way through the exercises one at a time to see which ones work and which ones don’t . It totally sucks but it’s all I can do. If you have only seen 1 neurologist, check out another one. I went to 3.
Nerve damage, compression etc... are very difficult do deal with and find the solutions needed. For docs as well as patients.

I hope you found help.

walterTOS 04/03/2018

I had all of the same symptoms as you. Literally to the description. Everyone thought the dizziness was not realated. I had surgery and now 24 months later feel 95% healed. Please message me with any questions. Happy to help

Denib1 04/15/2018

I was told 4 years ago since then had physio carpal tunnel ops on both hands cubital tunnel ops on both elbows as I have it both sides they have tried every thing I to get neck pain and headaches and pain down both arms pins and needles and numbness await my operation on the left side of my neck it is called thoracic outlet decompression so I know how you feel there is a lot of people that do not understand

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