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.

0 Online


What jobs can we do without causing pain? I am a social worker but filing, stapling...incease pain.



Hi! I had that same question long time ago. I had bilateral TOS and I can understand how you feel. I can't cashier because it just made it worse. I was put on the switchboard but yet had me do filing and typing which makes it worse. I think just answering phones will do while getting some therapy, massage, etc. Giving it a lot of time to heal, I think is the best therapy of all. I'm still working full time, dealing with pain but manage to make it thru every day. It is very hard. I have some thoughts of just quitting my job but how am I going to support myself? It's hard enough for me when my arms are down. I have to switch tasks, take breaks, do lots of stretching and lots of managing pain. I try to live life to the fullest but when pain sets in it is very very hard. I give myself a pat in the back everytime I make it thru the day! Just take it easy, know when to slow down or stop when things starts to aggrevate. It helped me a lot. Take care and hope to hear from you.

Hi, I just wanted to say, I'm going through the same situation of not knowing what type of job I can do that won't aggravate my symptoms. I'm a nurse and all my jobs require some computer work. I'm having to consider other options too, so I don't have a specific answer for you, but wanted you to know you're not alone!

I have been taking Neurontin for a month and it helps to bring the pain down to a manageable level. I have to take an extra pill, when I'm working at the computer all day. I use a microwaveable heat pack on my shoulders when I'm working and do stretches every hour and move around alot more than I use to. Hope that's helpful!

I am a nurse also, was hurt in two different accidents in the same day while at work over 4 months ago. I first had whiplash and cervical strain with c5 and c6 herniation. That then evolved into Thoracic Outlet Syndrome. I have been in PT since the beginning of November. I cannot work as a staff nurse as no matter what I do, it affects the pain, numbness and weakness. I just started taking Lyrica but the side effects are getting the best of me. I was a very active person before all of this. It is very hard and frustrating. I am learning to take one day at a time.

I hope I am sending this to jessabel,kar, and RN.
I am happy/sad to hear what/how each of you are dong.
There is a program called Dragon that can type what you say. I have it and have found it takes way more patience than I have to make it work for me, but for you RN's it might work. I see so many jobs for RN's for being the head of Case Management or the head others at Hospice...
I am very lucky that I can type slowly. I have been told that my perosnality is a big part of my problem. I am high energy, was very physically active and am tightly wound. I was told by my OT and massage therapist who both have special training for TOS to do yoga, meditate, stretch, use the hot tub moreand do 4 exercises 10 times per day. I am trying to do the yoga and meditate.
I injured myself building stone stairs, damn overflows, shoring up hill sides about 12 years ago. I just reinjured my self 5 months ago peeling green chilies no joke 45 min each day for 3 days.
The only jobs I can now see myself able to do is shceduling or case management with a Home Health Care Agency or ansering phones like one of you mentioned.
My proffesion is a huge part of who I am, I am TRYING to look at doing something different as a new door opening.
With 4 of use we must be able to think of something for each of us.

Thanks for sharing what's helping you and how your doing. I am taking yoga and meditation too. I can relate to so much of what you share.

I've heard about that voice activated program and that it makes alot of mistakes. A doctor I worked with tried using it, but gave up because it took so much time to fix the mistakes. I have come to the conclusion, I need to seek other employment. I realize I will never get better, if I keep doing things that exacerbate my symptoms. It's a scary place to be, as I worry about not being able to function at any job now, as my pain is constant and unrelenting at times. I am trying to take it one day at a time too. I tell myself, in this moment I am safe.

Thanks for everyone's sharings!

Wow, RN4life, you sound like me! I am also an RN and I just had surgery for a herniated disc at c5/c6 about 7 months ago. I am still in so much pain in my shoulder, arm and hand and I just saw a physicatrist and am scheduled for a EMG in 2 weeks and Im suppose to start PT next week. From the things that he said and the symptoms I have been having sound just like TOS. I work as a case manager and I spend most of the day on the computer and it exacerbates my pain so much! I have been thinking about my future as a nurse and I am really getting scared. I cant lift over 25 lbs so going back to hard core nursing is out of the question. I did dialysis prior to this job and no way could I do that again. Anyway, I am a member of several groups on this site so I just thought I would see what the TOS group was about. I am almost certain that this is what is going on with me. So, cervical spine problems can lead to TOS? They have been treating me for cervical radiculopathy and it is getting worse instead of better. I cant feel my pinkie, I have pins and needles plus the burning now and my hands have a tremor and it is getting more and more difficult to type. I have been in severe pain for almost 2 yrs now.

Hi everyone,
I am facing an uncertain future once again, after having bilateral pectoralis minor tenotomy as my first course of action to being diagnosed with bilateral neurogenic thoracic outlet syndrome, after living with the condition for 4+ years. I am Canadian, and live in Montreal. I was diagnosed with Neurogenic TOS 8 months after the pain started, which was later rejected by follow up doctors. I was so convinced I had TOS, that I decided to travel to St-Louis to meet with Dr. Robert Thompson, who is the director of the TOS Society in America. He easily diagnosed me, with classic symptoms. Unfortunately for me, a lot of damage has been done. I had surgery on April 11th, 2011, with hopes that it would give me enough relief to nt need to do the bilateral supraclavicular decompression surgery. It cost me a lot of money, but I finally feel some hope. I am in a lot of pain now. I also had a bloodclot complication following surgery. My rehab is going slow, and I feel worse than I did prior to surgery some days, or some hours of the day. The hard part of the rehab is doing the exercises at home. I have to be more dedicated.
TOS has been a nightmare, and I think part of the most painful part is people not believing or understanding the level of pain we suffer.
I don't know if I can consider working anywhere right now, that's how crap I feel. This email is taking every ounce of energy my body has in it.
Good luck to all of you suffering with TOS!
Posts You May Be Interested In:
  • nana012

    I have cancer

    I had to have a lung biopsy, and I have cancer. A very rare form that doesn't have any standard treatment. There just isn't a lot of case history for this. It is epithelioid hemangio endothelioma. The cancer support group doesn't talk every day. I can understand why. I'm waiting for the oncologist to call back for an appointment, and will hear in the next few days. Who knew. Ha!
  • irishwriter

    come unwind in the bp lounge

    theatre and I are there already. I'm having a very berry tea with crackers, cheese and cherry tomatoes and she's having a joint with some beer and we're both on really comfy recliners on thick pile carpet. we need some help with the decor if anyone is around??