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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  • heidiao

    Facing surgery, have questions...

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    Hi everyone, I am new to this group and am glad to have found a place to get some questions answered by other patients, instead of Drs.    I have been symptomatic since I was a child with my left arm veins bulging and arm turning reddish purple everytime I play piano, do dishes etc.   This February, my arm started feeling swollen, tight, heavy constantly so I headed to the ER on the advice of...
  • rdotjr23

    TOS without Hand Problems

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    Like many others in this group, I've struggled with pain and failed attempts for relief for three years. On my own, I recently saw a local thoracic outlet syndrome expert. He's a really good surgeon, but was perhaps too quick to diagnose me. In order of severity, my symptoms are (all on the right side):- Neck Pain (where the neck meets the back).- Chest tightness/pressure- Light Headed -...
  • kate2232

    What profession doesn't aggravate TOS

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    I am on disability for the TOS. I want to go back to work, but the pain is still bad even after my surgeries. What professions do people with this syndrome have? The doctors say this doesn't really get better, you just have to work around it. I just want to know in what ways are other people working with this condition?thank you 
  • Has anyone had a successful revision surgery of 1st rib resection due to ongoing TOS symptoms even after transaxillary rib resection? I had a local vascular surgeon do a 1st rib resection in 2011. From day 1 things were never right. Issues have progressed and I recently went to the TOS clinic at Mass General, to find out that the surgeon left a huge chunk of my rib in there which continues to...
  • papasfritas

    sister with TOS in chronic pain

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    Hello,I'm new here, but not actually for myself, but for my sister. She has been suffering with TOS (neurogenic, I think) for the past year. She tried many medications, including ketamine, but none have worked. She cannot take opioids because she cannot keep them down. Finally, she had a first rib resection done a few weeks ago. We were hopeful until this morning when she woke up and the pain had...
  • deleted_user

    botox

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    Has anyone had any relief with scalene botox injections
  • On June 6th, I fell out of my bed onto the back of my neck. I believe I have a whiplash type injury. Immediately, I had pain in the neck. I got back into bed to lie down, and I started having shooting pains in both arms. I took ibuprofen and proceeded to ride 52 miles of hills on my bike. It hurt to try to turn my head either way, and 44 miles in, I started having stabbing pains near my shoulder...
  • markb2

    Thoracic Outlet Syndrome

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    About MeMember since October 24, 2014 I wanted to join a site where I can relate to others with the same issues that I have been dealing with for years. Most other forums haven't had postings in several years. This forum seemed to have the most up to date contacts. I'm 54 years old and was diagnosed with 4 herniated discs in my neck when I was 35. I was a gym rat for many years and working out...
  • deleted_user

    Post TO Decompression Complications?

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    Hi everyone, name is Dave and I'm new to the group. Thanks in advance for all of the consideration and support!I have bilateral neurogenic TOS and I'm about 8months post-op from a thoracic outlet decompression with first rib-resection. I required this operation unfortunately due to nearly 80% compression of my artery at theoutlet...severe pain, weakness, blood flow issues, and feeling dead cold...
  • I was diagnosed with TOS a few years ago, after dealing with it for several years while the doctors took a very long time figuring out what it was. Once we finally got the diagnosis of TOS, which the doctor discovered through some simple tests in his office, he had me do physical therapy for a few weeks, and then I haven't done anything since. I also have writers cramp and constant tennis elbow...
  • deleted_user

    Is it TOS?

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    Hi,In august last year, I was sleeping and I woke up because my right arm was "dead". I had no feeling or movement. Nothing at all. It was not a tingling sensation but the feeling that the arm was "dead". It lasted around 15 minutes to feel it again. I was so scared!! I had shortness of breath. I was in shock. After seeing some doctors. I was told that I had had a transicient ischemic...
  • Hello there,I'm 19 years of age and have been diagnoses and treated for neurogenic thoracic outlet compression syndrome. Unlike a lot of cases my thoracic outlet only compressed my nerves, not affecting my blood vessels. When diagnosed I was told this is fairly rare, but more common in teenage females, I was around 16 when diagnosed. As a result of the syndrome I have lost around 70 - 80% of the...
  • deleted_user

    TOS or something else?

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    Hi everybody I am new to this group. I have been to state to state, doctor to doctor, and told that I have thoracic outlet syndrome. I was also told I don't have thoracic outlet syndrome. Anyways, I am in constant pain, as I am sure many out there are. I was looking to compare symptoms and see if I do indeed have TOS or if I should continue seeking opinions, and even surgery for the TOS....
  • deleted_user

    new here 12 years post-op

    6
    Hello everyone! I am new to this forum. This is the first time I have talked to others who have been through the same thing as me!I am 12 years post-op bilateral rib resections. I have never talked to anyone that is like me so this is very exciting. I wanted to talk to other people about TOS but I think the whole situation just traumatized me. After my surgeries in 2002/2003 I just went back to...
  • I am a 33 year old male who recently went to the ER due to my hand tingling, going numb, and turning white. After a ultrasound and CT scan I was informed that I had blood clots in my radial, ulner, and brachial arteries. Furthermore, the doctor explained to me that I have extra ribs coming off of my 7th vertebrae and that I have a condition called Thoracic Outlet syndrome which most likely caused...