hi, dianna

i heartily welcome you to our little family on the TOS forum here at neurotalk. in answer to your question, yes, i think you will find out rather quickly in fact, that you will get waaaay too much information here about that TOS dx. miles to go before you sleep, poor child.

bottom line? if you read carefully (look at the stickies and watch for links posted to the threads themselves at times also) you will end up with a lot more questions than answers, dianna.

but they will be the right questions to ask the people on your tx team as you carefully put that bunch together (and it DOES take a team). most of the mistakes in the world, get made because the wrong question is being asked.

you're in the medical profession and clearly there's a lot that does not need to be spelled out for you here. but one thing i do want to say to you, and that is that you will need to keep an open mind, because there are many preconceived notions and a great deal of outright prejudice where TOS is concerned. all of it does a great disservice to the suffering patient, in my experience.

that orthopedic surgeon you mention might be one example. not convinced, you say? could that be because TOS is not an orthopedic problem, per se, and s/he simply does not have the direct clinical experience with TOS to confirm or rule out the dx in your case, never having encountered another one like it? or is this person, perhaps, somewhat of a skeptic, or maybe just maybe we're looking at sour grapes! - this dx would mean losing your business, for one thing. TOS is not a profit center for orthopedic surgeons, i think we can all agree on that. it affects a lot of systems in the human body, but the spine isn't one of them (generally correctable by TOS surgery at any rate). so hmmmmm. oh, well! not your job to convince anyone, would be my thing. move on; you have more important things to do.

OK - to be fair, it can be rather hard to distinguish between actual neurogenic TOS sx and "TOS-like" sx caused by, say, cervical ridiculopathy. but there is another distinct possibility here that you should be aware of, i'm afraid, and that is the possibility that this surgeon does not believe that TOS even exists in the first place! don't personally understand that stance, myself - these people generally believe in nerve entrapment disorders like carpal tunnel syndrome, cubital tunnel syndrome and so forth but somehow have themselves convinced that neither nerve nor blood vessel entrapment can take place in the thoracic outlet. go figure, dianna. get back to me on that one! (i'm just kidding.) now, i'm not saying that's the case here, because obviously i don't know - but i have personally encountered these nonbelievers and that "wall of nonbelief" delayed my own TOS dx by i don't even want to tell you how many years (and i don't have the so-called "disputed" form of neurogenic TOS, dianna, i have true neurogenic TOS [!], replete with hand atrophy). so, beware, is all i am saying.

i mean no disrespect to any of your treating physicians, but it's not uncommon for the landscape to change a bit once we get the TOS dx. if it makes sense (the ortho would be off my team, or at the very least benched for the season!). and if it helps, a vascular surgeon is the right type of specialist to make this dx for you. and, personally, i do not see the need for a second opinion at this juncture, dianna. most of the top TOS docs are vascular guys (one chick, at johns hopkins, ya know she's gotta be excellent, right?) maybe it's just me, but i don't think you'd be here if you weren't pretty sure in your heart of hearts that the vascular surgeon is correct. TOS can and does mimic a whole host of other diagnoses. that's part of the monster, all right.

but the dx, once you get it, IF it's accurate...sure explains one heck of a lot. am i right? what diagnostic tests and procedures have you had done thus far? i think you're good for now (unless W/C tries to fight the TOS dx and forces your hand, which is entirely possible...). your sx certainly resonate with me, and i hate to tell you that, for this is not a fun dx to have, nor an easy one to tx. but i do like that the rx is to try PT for 6 months, that sounds absolutely like the right next thing to me...

ah, but therein lies the rub. this is the hard part and also t.h.e. key. v e r y few PT's have the right type of training to know how to work with a TOS patient, dianna. in this country i think it's less than 10%. somewhere i have a list of the questions you're going to want to ask before you sign up with any PT, but for now i can think of one very good one (and it is in tam's post too): do you use the 'edgelow protocol?' it's sort of a trick question, if you will, to let you know if the facility you're dealing with even has a clue who peter edgelow is...(you can google him and find out more or perhaps there's a link attached to his name up in the sticky - he's located in northern CA, up in hayward, sells a TOS kit, a mini-kit, or you can purchase items piecemeal, call medical dynamics in santa rosa, CA @ 1.800.945.0302 to order his stuff if you're interested). there are other TOS PT protocols besides edgelow which are quite good, certainly, and ways to approach this, like hellerwork, feldenkrais, any type of postural or bodywork combined with PT/OT would be good - but the latter must needs be TOS-savvy; can't emphasize that enough. the wrong kind of PT or OT can not only NOT help a TOS'er, it can be extremely DESTRUCTIVE.

we call it "shake and bake," dianna. it should be all about core stabilization for those deep neck flexors, breathing exercises, releasing and rebalancing the dread scalene/subclavius/pec minor muscles at first.... before you move on to strengthening the mid-traps and rhomboids, learning gentle nerve glides, etc. nothing should cause you pain or make you more symptomatic. NOTHING SHOULD CAUSE YOU PAIN OR MAKE YOU MORE SYMPTOMATIC. we typically don't do well with "traditional" devices like weights, therabands, traction, UBM's, rowing machines, etc. exercise great care here (pun intended). ultrasound, TENs unit, moist heatpacks, coldpacks, all good. to tolerance.

what part of the country are you located in? do you have a good PM doc? that might be a good next step for you, i think - and could also be a great way to find the right physical terrorist. oops i mean therapist.

anyway, welcome to you. i look forward to getting to know you better. i'm sure you're aware there's a W/C forum on the neurotalk board for issues related to the legal aspects as they come up.

happy reading!

alison