sorry we had to meet you like this, but glad you've found us. too many of us come here having had unnecessary surgeries... i guess i'm glad i never was able to find a surgeon willing to operate on my neck (i'm like you, that was my worst sx, for years and years - oh, what am i saying, it still is!)

to me, one of the worst things about TOS is that it can mimic so many other disorders that it leads a lot of otherwise competent docs down the wrong path for a very long time. meanwhile, we suffer - or are not believed when we try to report the amount of pain we're in! it sucks, it sucks, it just plain sucks.

what part of the country are you located in? if you are near a major university with a teaching hospital attached to it, perhaps there is a pain clinic there you would be willing to give another go. because in my experience, the good ones offer a whole heck of a lot more than just meds. (actually, it's hard to GET meds from the ones i've been to!)

but seriously, the right kind of PT (you need someone trained to work with a TOS'er, very important), a pain psychologist, maybe a support group in addition to regular follow up visits after an initial evaluation by a competent PM doc now that you have a confirmed dx of TOS (i am assuming it has been confirmed by a TOS specialist? is that correct?) just might be worth another shot, to try and get some quality of life back.

many here have had TOS surgery and if you stick around you will be reading about that. not the answer for everybody, of course, and unless your case is vascular or has reached a certain stage and/or is a certain type of neuro TOS it may not be something for you to contemplate. or not just yet, at any rate... but having said that, many of us do find that a consult with a top TOS doc (usually a vascular surgeon) can be very informative. it can lead you to other specialists in your area and other modalities to try, for example. they're not ALL eager to cut on you, contrary to popular belief! nor should they be... only if it's going to truly decompress the neurovascular structures and allow your poor body to start healing.

there is a lot of information in the stickys up top, as i'm sure you know, and within the threads and posts themselves you will find support and gain the benefit of others' experience with TOS. each one of us is different, of course, and much of what is here you will need to take with that proverbial grain of salt... but we mean well!

i hope you join us. the search bar (including the advanced search function) will help you to call up older topics and poster threads, respectively, if you're interested - by key word or by name. they're located in the upper righthand portion of your screen. more than you ever wanted to know about thoracic whatlet? syndrome (that's what i call it! since no one ever knows what we're talking about anyway, right?)

pull up a seat. sounds like you've earned it.

and welcome home.

alison
"Be Brave"