Thoracic outlet syndrome

I wondered if anyone was diagnosed with thoracic outlet syndrome.  I had surgery for this in the 80's.  Was tested for many things at the same time Ra, etc.  Numbness in arm-hand and chest pain were some of the symptoms.  I've never heard of anyone else having this.  It did help me as I could not even start my car with my right hand which was the one affected.  Just curious.

Puppylover

They call it Thoracic Outlet Syndrome but its the inlet that is having the problem. They used to do surgery for it allot, but it wasn't very effective in most cases because the nerve entrapment's weren't at the spine, they were usually somewhere between the neck and shoulder muscles, the surgery often did more harm then good. Once they figured that out, a whole lot of messed up surgery's latter, they went to physical therapy exercises if it takes 6 months to a year or more to fix the problem. That doesn't mean it would take that long to get some relief.

Now they focus on stretching exercise to get the neck and shoulders backward and get the pressure off the trapped nerves. They are very simple exercises, stretching the scalene muscles in the neck several times a day, standing in a doorway with your forearms braced against each side of the door and slowly leaning forward where its pushing the shoulders back and holding the stretch for a minute or better.

They find most people with this problem have computer posture, where their shoulders and head have been leaning forward for many years.

The exercises for Thoracic Outlet Syndrome seem to work pretty good, but it takes a long time to retrain the head and shoulder posture backward where it belongs.

Search Thoracic Outlet Syndrome Physical Therapy and you will probably find a Physical Therapy website showing these stretches.

Note: This is not medical advice or directed to you personally. It is simply what I have found out about this syndrome and what they currently do to treat it.

My doc thought I had it but another disagreed.  My hand turned blue in certain positions and my pulse would groww very week.  I  was having severe back spasms that he though may be causing muscles that wrapped around some nerves and blood vessels toconstrict.  Was the first time I heard of it.  It lasted for months. but once the spasms calmed my hands stopped turning blue.  Just one of the many bizarre things that happen to me!

Puppylover,

I have the same thing but mine stems from having a horrible spine. I've had 4 cervical disc surgeries and have my second plate in my neck now. I have chronic chest pain from it and have to have a stree test and echo every 2 years because of it. The chest pain will almost cause me to drop to my knees but knowing that it isn't a cardiac condition doesn't really help when it is happening. We can get some weird stuff, can't we?

Nurse2

puppylover ,its great how animals can distract your pain also sense when your not feeling well !golden retreivers are so sweet Ihave a dr appoint today ,soon getting surgery for thoracic outlet ,the pain meds help but every day iam still in pain ,so I  cant wait ,I probley should incress my pain meds but hate the way i feel on them.just wanted to say hi and your lucky to have such a nice dog

I can relate to the stories here. Thank you for sharing. I hope that my story will help someone.

I was diagnosed with TOS nine months ago, and never did I imagine it would take this long to recover. I figured I would find the solution, work it hard, and I would be better in a couple of months, yet I am still struggling with this problem, though it has improved since I was diagnosed last August. I am confident I will get back to normal eventually. Doctors have assured me it takes a long time to recover, to be patient.

I was a daily newspaper reporter for nearly 12 years, and my body began exhibiting signs of TOS during my last months at the paper, but it was nothing major. Some wrist pain. However, I left the business to pursue other interests and took a few months off, with little keyboard use, and it went away. When I began freelance reporting again last summer, it came back with a vengeance and overnight, with burning pain radiating down my arms and into my hands. My fingertips were numb. It hurt to even lay a finger on the keyboard.

An orthopedic surgeon diagnosed me -- all my years of hunching over the keyboard, stressed out on deadline, had caught up to me (I had developed forward neck, meaning the natural curve was gone) -- and recommended physical therapy and massage therapy. I eagerly made appointments for both. I went to two physical therapy sessions, and scoured the Internet for information about TOS, of which I had never heard before. I took copious notes and developed my own little recovery plan based on suggested exercises. I'm glad that I did because the physical therapists at the place my insurance covered were absolutely overwhelmed, and I was one of three or four other people they were juggling at the same time. They were of little help, and on my third visit, the therapist told me that, based on my personal plan, it seemed as though I was doing everything I could do and there wasn't anything else they could do to help me. So I left.

But, the pain didn't go away. I had good days, and then it was back, which was really frustrating. Before TOS, I worked out five days a week, including lifting weights. I hiked and kayaked. I couldn't do any of that anymore, and pain, combined with frustration about my limitations, had a significant impact on my emotional well-being, making me depressed and/or agitated toward everyone, depending on how bad a day it was.

I took a job that required me to do a lot of computer work and reading/editing, which required me to look down a lot, which aggravated my neck. I spent the following months looking for what I hoped would be quick fixes, while continuing massage therapy, which provided temporary relief and allowed me to continue working. I went to a chiropractor/acupuncturist, but the treatment was going to cost $1,600 AFTER insurance coverage. I couldn't bring myself to do that before trying less-expensive solutions. I saw a yoga therapist who specialized in TOS, and he developed a gentle routine for me, but I didn't dedicate myself to it because of long workdays. Then I decided perhaps I needed meditation to help me loosen my shoulder muscles so they wouldn't press on the nerve bundle. In short, I was on a merry-go-round of potential solutions and becoming increasingly desperate.

Here is what has worked for me up to this point: Yoga and the good posture and breathing that it promotes. On days when I am conscious of my posture and breathing from the time I wake up, I have very little to no pain. The book that has helped me is "Healing Yoga for Neck and Shoulder Pain" by Carol Krucoff. It describes TOS well and provides a list of exercises meant to provide relief. I go to a yoga studio once a week to ensure I am doing the poses correctly.

If I had to point out one thing that helped the most, it would be breathing properly, through my diaphragm, instead of breathing shallow and letting my upper body do all the work. It took me a while to learn how to breath through my diaphragm, and I place a small sandbag (the kind used at yoga studios) over it to help me focus in that area. When I breath through my diaphragm, it gives my upper body a rest, which allows the muscles in my neck and shoulder to relax. That, in combination with good posture (chest out and up and shoulder back -- mountain pose is great for this), allow me those good, pain-free days. Also, a good night's sleep is crucial. When I don't sleep well or get little sleep, my body is tired and doesn't want to cooperate.

I have finally accepted that there is no quick fix to this problem...not that acceptance makes me want to scream in frustration any less. I still have mild to moderate neck and chest pain most days, and my nerves bother me at night, but I do think some of that may be psychological: I am afraid of the pain, so I trigger the pain. I have to keep trying.

Best of luck to each of you in your recovery!

Hi Lookingforasolution. Thank you for your post. My TOS resulted from an injury and it was actually my physical therapist who discovered it. I had to suggest it to my doctor, who then checked it and ordered all the tests. My doctor couldn't figure out why I was experiencing so much pain so I'm thankful for such a great PT. My TOS stemmed from a neck injury a few years back and after finally having everything confirmed I've committed myself to daily stretching to help alleviate the problem. I only want to do surgery as a last resort. My PT set me up with a foam roll that I lay on lengthwise and put my arms out to the side. It's a Great Stretch and it really helps open up the chest area. I am also suffering from Fibromyalgia. The Fibro specialist I see says he does have a lot of patients with TOS as well.... Is there a connection? I don't know.

Thanks for the recommendation on the book, I'm going to pick up a copy. I had to quit doing yoga due to cost and the last session I had of Gentle Yoga left me in pain for a week! I'm going to start slow again. I've also cut out inflammatory foods and that helps with staying slim too! Last but not least, meditation. I'm hoping that a daily routine of all the above will help get me back to feeling good and managing my TOS and Fibro symptoms.

Also, to anyone out there who is seeing doctors over and over... Take charge of your health, start eating healthy, get off the meds, do some form of yoga, stretching, etc daily and try to keep a positive mind. I spent a year on pain meds and muscle relaxants and I will never go back there again. Start slow, but find the strength.