Thoracic Outlet Syndrome Support Group

Hello everyone.

I would like to introduce myself as I am new to this group, and I am hoping that someone out there can offer me some encouraging news.

I am 25 years old and was diagnosed with TOS about 3 months ago, although I have been suffering from the pain for over a year with no answers. I was so relieved to find someone who understood my pain and knew what it was. That releif quickly turned to despair when I started doing some research about this condition.

So far almost all the stories I have found online are of people who were able to find no relief, who ended up never been able to work or live a normal life. This scares me so much. I was in school for 6 years, and have only recenly started my first job, which I LOVE! But I am terrified that unless I can get my pain under control, I may lose my ability to work, and I don't know what I would do.

I am 6' tall, and after what I have been reading I am sure that poor posture is playing a role. I am seeing a chiropractor and massage therapist on a weekly basis with no significant improvement. My chiropractor wants me to try PT, so I will be starting that soon.

My family and coworkers do not understand what I am going though. They liken my pain to a "pulled muscle", and that if I just rest for a few days I will be fine. They don't understand that some days, nothing will stop the pain. Even just sitting and doing nothing can at times be painful. My boyfriend is excellent and does everything he can to help me, but I feel so bad that he has to listen to me complain all the time. I just want my life back.

I have been researching the surgery option, but again everything I read is leaving me SO depressed! So many people end up worse afterwards, that I think it would be a last resort for me.

So anyway what I am wondering is if any one out there has managed to find relief, and what has worked for you? Are people able to carry out a 'normal' life? I need to find some hope, some inspiration to get me through this. Everytime I search online for info, I end up even more and more depressed, but I refuse to believe that there is such a debilitating ending for everyone affected with this condition.

Thanks for taking the time to listen to my story! I am happy to have found this group :)
Posted on 03/29/09, 01:03 pm