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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jordyk13 06/08/2017

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 my other doctors that that particular doctor "diagnoses everyone with thoracic outlet syndrom." I'm not sure if I truly have it or just other symptoms. I am out of work on unpaid leave and fighting with disability companies to hopefully get some financial assistance during this horrible time. How have your experiences been with disabilitya and workman's comp? Previously I plaid years of basketball (not sure if that would be too repetative) and I work in office managment and administrative so tons of computer work. I keep wondering if I need to switch jobs. Have any of you found a type of work that allows you to survive with this condition? What modalities of treatment have helped you? My neurologist has a TOS vest to help keep the body in the right posture and position, but it is very expensive and I'm not sure if it would truly help. I would love to hear some of your input from people who understand. It is hard to live with such a horrible condition that people don't understand.

Thanks in advance for any input you can offer!

Sincerely,

Jordynn

Imlosingit 08/04/2017

Hi Jordynn. I was diagnosed with TOS about 10 years ago. I had to go back and look it up to remember what is all about. Didn't realize how much I forgot. And that there's a nonspecific type. One where you get the symptoms but the cause is unsure. As far as I can remember and see, is that if you don't have the serious one that needs surgery, PT is the treatment for it. I remember I did about 10-12weeks. I had front and back so it took more time. You can go on line and type in exercises for TOS and print them out. You should check with your doc first. You just need to make sure you do them correctly. Easy things to do. But important not to over do or go to fast. No jumping from 10 to 20 in a weeks time. Even if you feel like you can. I tried it, didn't go over well. So that's my advice to you. Doing the PT helps alot. Along with anti-inflammatories. I was taking 800mg of ibuprofin twice aday. you'll still need to stay away from long term repetitive movements. oh and posture. Try to have good posture. I wish you well. Pain is never easy, if you don't know how to make it go away.

givelovegivejoy 08/15/2017

I was diagnosed with both forms of TOS 11 years ago, but fortunately have never had the vascular symptoms reappear from the initial time. I would experience pain in all the places you describe including my elbows, hands and fingers. I DID have neck pain, often in the front, but could also be in back. In the front it felt almost like being choked. Also have had short sharp pain in my head, always on right side, my dominant arm. Key is not doing any tasks that aggravate condition for any length of time. Reading, computer use, writing, any task where your arms are raised for an extended period.

I did get worker's compensation eventually, but that only goes so far. Trying to figure out work is hard because there is no persistent labor with arms or office work. You may have lost a significant part of your ability to earn money. I know I did and that was extremely hard part to accept.

jordyk13 08/15/2017

Thank you both for your replies. One of the hardest things for me to accept is that I don't even know if I have all the right diagnosis. I have never had vascular or pulse issues. The doctor says mine seems mostly muscular which is unusual. My physical therapist said there seems to be something else going on in my neck. However every spine doctor I saw previously had no idea what was wrong with me and just said I had a straight forward neck and needed to relax. I am trying so much now and have in the past. Sometimes I worry if I'm doing too much or not enough or the wrong things.

Are you both suffering every minute of every day? Or do you have breaks in pain? What helps you?

Thanks so much

livin-on-a-prayer 08/30/2017

Hi - I was finally diagnosed with neurogenic TOS in June 2017 and I have just had surgery August 1. I had to leave my work as a pastor in March after dealing with the undiagnosed and daily pain that started in August 2016. I presented atypically with knife like pain in my right scapula/trapezius muscle and right temple headaches that couldn't be touched with medication. Also numbness in the fingers on my right hand on waking. The pain was sometimes horrible in the AM depending on how I slept and then would get worse as the day progressed with sitting in meetings and computer work. I tried a standing desk, PT, massage, medications, chiropractic, neurology chiropractic, a million steroid shots in various places in my neck and shoulder and scapula. Rotating ice and heat helped. Medication helped - muscle relaxant, gabapentin and Percocet. For the headaches we finally realized they were occipital headaches and began treating them as such. Watching my posture and posture shirts helped. I tried everything and visited every doctor I could until finally ending up at vascular surgery. Surgery was August 1 and still waiting to see if it worked. Can't write well or use computer. Pain now is surgical in nature. Use medicine, PT with massage, ice, rest, sleep in recliner. .
It has been an awful experience and I pray it ends soon. I pray you can find some relief.

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