and whether someone has had TOS surgery or not -

i think it is really important to keep in mind here that there is a HUGE difference between those of us who have vascular TOS (i.e., arterial or veinous), versus those suffering primarily from neurogenic TOS, in terms of what we can handle physically and how well each of us can expect to recover in rehab.

don't want to sound all "doom and gloom" here, by any means - i'm just saying that if your case has a big neurogenic aspect to it... caution really is the order of the day.

very, very few PT's understand what to do with neurogenic TOS'ers. it is a much different picture if you are recovering from vascular TOS... your prognosis is way better and you can do far more without the delayed flare-up reaction that some of us others get, from the most basic of "exercises." our neurovascular systems are in a constant state of hyperexcitation to begin with - which is why the constant muscle spasm in so many cases.

edgelow and butler have worked hard to come up with TOS protocols for that reason. suparna is another one (can't recall her co-author's name precisely, think maybe it's jack bellamy?). paula ashbaugh in denver has a post rib-resection TOS protocol that she's been generous in the past about faxing... her contact info is up in the DR's and PT sticky.

this is very tricky stuff and must be undertaken with proper guidance, awareness, education - all of that good stuff. and patience (not something TOS'ers are known for-) i find that extremely hard to come by in a "normal" PT facility, and i live in a major metropolital area. but i have true neurogenic TOS. i do think it's another story if your case is vascular, and even if it's neuro or mixed... perhaps if you're in better shape and have a timely dx and the very good fortune of finding someone most excellent who DOES know what they are doing in a PT facility... you'll be OK there. this has not been my experience over the years, is all i am saying.

'shake and bake' PT can be one of the most discouraging, not to mention downright destructive aspects of a tx plan gone wrong for a neuro TOS'er!!! so if you do choose to go to a professional PT'er, make damned sure they at least know who sharon butler and peter edgelow are. ideally, an open-minded PT would be willing to implement one of these excellent TOS protocols, or at the minimum, take and use suggestions from each of their programs that the two of you find in the process work well for YOU. for YOUR case of TOS.

because in the end, each case of TOS - whether it's neuro, vascular, or neurovascular - presents so very differently. part of the controversy and part of the challenge in tx is to find out what works and what doesn't, without becoming someone's guinea pig or being labelled "exercise intolerant," when the proper protocol hasn't been considered from the get-go.

i'm getting dizzy and so had better get off of that soapbox now...

lots of luck to everyone - and don't forget to breathe!

alison
"Be Brave"