Hi everyone, my name is Sarah, I am 18 years old, and I have been dealing with thoracic outlet syndrome for what has felt like the longest 2 years of my life. When I was first diagnosed I went to physical therapy for a month and afterwards felt completey better. I was doing gymnastics at the time, but was forced to quit due to the growing severity of my problem. I ended up needing shoulder surgery for a different issue in July and since then my TOS has been worse than ever. I am constantly feeling that dull achey pain and have lots of swelling in my hand, arm, and neck. The part I hate most in the coldness and tingling in my hand, but recently I can't even open up my hand all of the way. Sometimes I even get these terrible headaches which my doctor believes is a symptom of my TOS.
I have been struggling a lot mentally recently because I am still in high school so of course my parents are the one's dealing with all my doctors appointments (I have only just turned 18). I have tried seeing neurologists, internists, orthopedics, chiropractors, physical therapists, and a vascular surgeon. Nobody is able to help me get better, I have also tried lots of medication from gabapentin to steroids: no change. The vascular surgeon says it looks like I am going to need the surgery but my dad is saying that we are not doing that. I am getting insanely frustrated because it is my pain yet I have had no say in the treatment process.
I am really hoping to be feeling better by the time I move across the country for college, but at this rate it doesn't seem like I will get there without surgery. There aren't really any TOS specialists near me that I've been able to find, but I've been begging for him to take me to the UC Davis TOS treatment center which is about 5 hours away from us.
Just found out yesterday I will be needing rib resection surgery. I have a a few surgeries already. Would anyone pls provide me with any information on the surgery.
Hi, im having yet another sleepless night with severe pain and came across this group. I had no idea there was a support group for this but Im glad there is. I know how helpful it is to have a problem and be able to somebody that can relate. I had TOS flair up a few yrs ago and steroid injections helped. It was supposed to be for a bulgind disc in my neck which turned out to be coincidence but it...