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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  • dce4165

    Thoracic Outlet Experience

    Hi everyone, I was diagnosed with Thoracic Outlet Syndrome a couple of weeks ago so I thought I would share my experience since I was looking for other's experiences once I learned I had this. I am a 35 year old healthy and fit police officer. I worked out on a regular basis and actually increased my workouts (mostly running and push-ups) prior to this. On a Saturday afternoon I had a sudden...
  • sunny08863

    Thoracic Outlet Syndrome Surgeon in NJ or NYC

    hi , I need the First Rib Resection and am looking for a surgeon who has experience with these surgery ,  Would appreciate any recomendations
  • jordyk13

    Looking for people who understand

    Hi friends,My name is Jordynn and I have been suffering from pain in the neck, arms, shoulders, trap and chest for almost two years.  My worst pain is in the neck.  Everything I read about TOS doesn't seem to attribute neck pain to the syndrome as one of the worst areas of pain.  However, I saw a neurologist in California who said that I have it.  I'm a little nervous because I have been told...
  • deleted_user

    Post TO Decompression Complications?

    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...
  • hollou1

    Could TOS have caused my DVT?

    So the doctors think i have thoracic outlet syndrome on both sides of the body. This month i was diagnosed with a left subclavian dvt. I'm just wondering if the TOS could be solely responsible? ​Prior to the DVT I had not exercised for around a month so it doesn't make sense that it could have been effort induced. ​Any thoughts?
  • kate2232

    What profession doesn't aggravate TOS

    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 
  • Mick16

    My 1st year

    Hi my name is Michael i am 31 and live in the uk.  I have had minor TOS symptoms for years but as I am painter and decorator I thought the pains, tingling and numbness where because of my job and only effected me of a night.  I went to see my GP when it started to effect me of a day time.  He didnt know what was up with me and sent me to physiotherapy.  The first physiotherapist did not know...
  • jjjjs

    Heading to Mass General to see Dr. Donahue

    I have been in PT for over a  year and I am now heading down to see Dr. Donahue.  Anyone with prior or current experience?  Wanting to know what to expect for the first visit.  ThanksSara
  • deleted_user

    after TOS surgery.

    I was diagnosed with TOS in 2007, after almost a year and a half of running around with different doctors, I found a great doctor in New jersey who actually knew what I had and sent me to do all the necessaries tests to make sure that I had TOS, sadly it was too late and I had a chronic case of TOS. we started to get authorization to have a surgery and it was done in Boston Massachusetts General...
  • heidiao

    Facing surgery, have questions...

    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

    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 -...
  • dianneconnelly

    Revision of 1st Rib Resection surgery

    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

    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


    Has anyone had any relief with scalene botox injections
  • k2robinson

    Is it TOS or am I going insane?

    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...