honey, i know just how you feel. i think a lot of us do. and i know how grateful you are to have that husband of yours, who is so understanding and supportive - many of us (myself included) have to live alone with this nasty TOS monster -. if we had friends and colleagues once, they're long gone, same for husbands, lovers, etc. it's not that they don't love you or don't want to know what's up with you, aren't concerned about your health or anything... i think they honestly just don't "get" it. it is not in their experience to suffer this kind of pain, or to have something that a doctor cannot fix. and it scares them on a very deep level to think such a thing might even exist, truth be told. so they don't even want to know about it, and it's safer for them to pretend that it's all in our heads or something.

i honestly don't think you will have to wait as long as you think for dr. B. think of it like a waiting list at a good restaurant, rach. they always tell you it's gonna be longer than it actually is, right? that way, the people who aren't really serious about dining there will usually find someplace else to go and wander off. the ones whose hearts are set on that particular establishment are left pleasantly surprised to find their names called within 10 - 15 minutes, after being told they must wait at least 45 minutes to an hour!

but he is not the only surgeon out there and if you feel you need the operation sooner than he is able to oblige you, then you do what you must to take care of yourself. but bottom line, rachael - we all need to face the fact at some point, that surgery does NOT take the TOS away! it is not a "fix" and it's not like you can go get that rib resection or scalenectomy or whatever done and bam! your sx will disappear, just like that. just doesn't work that way. i wish it did, believe me! and i guess for some people, whose cases are primarily vascular TOS, or whose dx's were extremely timely or whatever, the surgery can bring a very good result.

in most cases, however, it is just a part of the answer... and you will still need to keep searching for the right things that work for you to lessen your sx so that you can lead the life you want to afterwards. ergonomics, PT, emotional support, meds, lifestyle changes, etc., the list goes on and on...

but to address the pain and frustration you have right now, and we've talked about this before, rachael - it may be time for you to be switched over to a long-acting opioid. demerol is not a good choice for chronic pain patients, for the reasons gibb gave you in the other thread. we certainly don't want to put your internist on the defensive here or anything, but topomax is not going to address the pain issue, plain and simple. that med is for the nerve sx and/or migraine h/a.

no, what you need is a narcotic like opana ER or MS Contin, coupled with a short-acting one for breakthrough pain, like opana IR, roxicodone or dilaudid. then a muscle relaxant (not a benzo) would be good to have as well: zanaflex, flexeril, or skelaxin are good choices as far as that goes. if you are not sleeping, you might need lunesta, ambien or something like that (but i would try adding effective long- and short-acting opioid meds, a good muscle relaxant plus the topomax first - you may find that you don't need anything else-).

no apologies needed, rachael. we know how scary and how frustrating this is. TOS is a wicked taskmaster and you are right when you say there is so little understanding. you probably know more than your doctors or anyone else around you does at this point. hard to accept that, but it is true. sadly.

are you still in PT? because a good program, working both with a professional who knows how to help a TOS'er and at home, can make a big difference while you are waiting for your surgery. and, of course it goes without saying that after your surgery you will need this person as well.

i am so sorry you are having a hard time. i feel just as angry, resentful and hurt as you do sometimes and it is perfectly OK to express those feelings here. we all get discouraged, TOS is a very difficult thing to live with and can make even the smallest task seem impossible sometimes. but this is the one place you don't need to explain yourself, rachael - because most of us have been right where you are. so hard to keep smiling and some days you shouldn't! just let it out. this sucks.

keep calling that PM doc's office to see if they can't get you in earlier on a first-visit cancellation. maybe that would be an option. or perhaps your internist would be willing to consult with the PM doc and prescribe more appropriate pain meds to treat your sx in the interim - might be worth asking.

whatever you decide to do, rachael, know that you have a lot of support here. if you have any questions or anything, ask away, OK? and hope your weekend is as nice as can be, in the meantime. i sure know how you feel-

alison
"Be Brave"