hi and welcome, sorry we had to meet like this.

if you've just been to a TOS specialist, then i'm afraid you may be back at square one. while i agree that myofascial release and cranial-sacral therapy are good methodologies in terms of what works for a TOS'er in the world of PT, if you have JUST gotten that dx then the chances are that the practitioner you've been working with up until this point is one that either is not specialized in how to work with one of us, or has not been utilizing a TOS protocol with you. if you've not been getting better, suspect the former! (they ALL "say" they know how to help TOS'ers; very few do, just FYI...)

this is not to pass judgment on your PT. it is an unfortunate fact that, in this country, anyway (i am assuming you are in the US), less than 10% of PT's receive the training necessary, let alone the practical experience, to know how to work with someone suffering with an injury like this one.

it is very important to find out, first of all, if your TOS sx are primarily arterial, veinous, neurogenic, neurovascular, or a combination of the foregoing. as has been said, there is a risk of a blood clot forming if your TOS is primarily veinous. if it is arterial in nature, i believe the danger is of an aneurysm developing. i'm not trying to scare you and presumably, the TOS specialist you consulted with went over all of this with you during your exam. the good news is, if you ARE a candidate for TOS surgery, then your prognosis is much better than that of a primarily neurogenic case if yours is mostly vascular.

i also agree that it would be hard to imagine a case of primarily vascular TOS without at least some neurogenic compression going on; it all goes together in a very tiny space, anatomically speaking, and it's all a matter of degree. but from the little bit of information you've provided, it sounds like - and i hate to say this - you are at the beginning of the journey. i know that's probably not what you want to hear.

has the doctor ordered any additional diagnostic tests for you, to confirm the TOS dx and if so, what are they? many times electrodx and/or a scalene block will be ordered, for example (i think few places in the US offer botox injections into the TOS muscles, but los angeles is one of them, johanna...we are lucky in that aspect!), to determine degree of neurologic deficit, as an indicator of whether someone might be a good candidate for surgery, etc.

but more often than not, unless there is vascular compression serious enough to threaten a clot or an aneurysm or you fall into that 1% category of true neurogenic TOS (which you've already told us you do not, as yours is trauma-induced), any good surgeon would want you to pursue a proper course of TOS-savvy PT for a good 6 to 9 months before even considering surgery as an option.

you can always get a second opinion, and if you're bound and determined to get the operation, you'll find some idiot willing to cut you open! (kidding! i'm only kidding! how does that old saying go?

"the trouble with carrying a hammer around is, pretty soon everything starts looking like a nail...."

but i am dead serious when i say, please stick around and do some reading and lurking here before you decide anything on the surgical front. TOS surgery is a major ordeal and a hard recovery and not something to be entered into lightly. you may very well want to consider traveling to have it done by one of the top docs, as beth has said. johannakat did a thread pretty recently on how she chose her surgeon, which you will find in the 'doctors and PT' sticky in the uppermost part of the forum. or use the 'search this forum' function, you'll find lots of stuff from past threads.

but johanna's obviously lost her mind now and not to be trusted. so don't listen to anything she has to say from here on out.

(surgery next week are you out of your F'ing mind my good woman? what about our roadtrip for god's sake; here i thought we were waiting for you to recuperate and peel yourself off of that couch...

shelley talk some sense into YOUR friend, would you puleeeze!!!!)

sorry, welcome, welcome, pull up a chair... don't pay us no nevermind we've just all gone 'round the TOS bend. plus we're on major drugs!

hope you like marlboro men

oh, and i wanted to ask you whether you have a pain management specialist on your tx team, as many here find that invaluable in addition to a good neurologist (some of us have been lucky enough to find a PM doc who IS a neuro, actually), i personally don't like to see anyone struggling with a big decision like whether or not to get TOS surgery done with pain levels raging out of control. it is supposed to be an elective procedure and calmer heads need to prevail. definitely not a fix-all or something that will take all your pain away, by any means. won't even get you out of PT....damnit

bottom line? i hope you don't have to have TOS surgery. there are many who believe TOS to be a soft-tissue problem - if you find the right PT who's to say wonders cannot be worked, but the key is you must get actively involved at this point in designing your own treatment plan and get into a killer headspace to fight this thing. if the dx is accurate you are in for bumpy ride. the good news is, look around the forum - this is your support group! the bad news? look around the forum; this is your support group!

alison