I have a question
 

Why do we hear and see news information and talk shows about EVERY ailment in this world except TOS? I wonder why no one knows of this? I feel like we are the leppers of the world. Is it because no one knows what to do for us that they don't want to speak about it? Very frustrated.

Linda

I think this is the case because the symptoms can mimic so many other things; there isn't a true consensus (that I know of) about which tests are 100% definitive for it ( i'm sure this will stir some "stuff" up); the sx vary from person to person. That, and doc's for the most part aren't taught about it, and what they hear from their colleagues isn't true. oh, and for the most part we "look" healthy. I had a "friend" in school for PT who had a teacher say that RSD and TOS weren't really illnesses, that it was all in your head. :holysheep:
arggggghhhhhhhhhhhhhh......

good thread Lin!!

"looking healthy"
 

I've been questioned about pain meds because I look "healthy". I try not to outwardly show my pain because it does not go away. It is not like a broken bone, or after surgery. IT does not go away. I did have 6 amazing years pain free. But while I had it before and while I have it now, it is here.

My husband and I were discussing pain meds. He had surgery. He is healing. I am not. I am told not to exercise. NO PT. Just rest my trap muscle. How am I going to get better! I go for my appointments and am told come back next month. My hubby can wean off meds because he is healing. What do I do.

LinJane,
 

nobody wanted to talk to me about tos, mostly the orthopedic doc that diagnosed it. My pcp at the time, I felt, was perceiving me as a histrionic hypochondriac.

ALL I wanted was one person to listen to me, and perhaps that one person taking a chance with maybe some amytryptillin (sp?). I decided to travel 100 miles thru a big city to my husband's hometown to see the family doc we grew up with, and finally, finally, someone sat down and listened. I had shaded in the places on my neck, shoulders, traps. arms and scapular area.
He looked at that, listened to me (took maybe 20 min.) and then ordered an mri which only showed c-spine stuff, but enough for him and me to feel comfortable trying the elavil (amitryptillin). That night and every night since then I've slept better than I EVER had to that point. I didn't realize I wasn't sleeping well, I NEVER HAD. Possibly some of my relief was just the placebo effect of having someone not absolutely blow me off. He listened, he ordered and I'll bypass the big city anytime for the good old country doc who, despite what they think in the big city, knows his stuff better than any of them. My best to you. :) phoebe

I do think that no one wants to deal with us because they cant fix us.. The reason i think docs have such a problem with us and beleiving us is because its not something you can see in a MRI... and there is no one diagnostic test that says for sure HEY THIS PERSON HAS TOS....

To me if i a doctor cant see it an xray, MRI and so on they dont beleive it is there and therefore they dont want to try and help you because they know they most likely they cant fix it!

Sorry for rambling but just my opinion... .

Pain free hugs :hug: :hug: :hug:

I think those are both good points Linda and Wberry..... People look at you funny when you say I can't do X because I hurt. Then they see or hear that you take X pain med, and think you're just looking for a fix (*cough* ER trip *cough*). I too try not to show the pain, but I'm starting to let the people around me know when I am hurting, so that HOPEFULLY they'll understand - a little.

Wberry- you're right- most docs would to the emg, mri, xray, blah blah blah, not see anything too abnormal and then just dismiss you as a headcase. Where are you located? Keep trying to find those that won't do that. Look at our sticky with Dr's names at the top of the forum. I happened to luck out and get referred to a PM (trained as a neurologist, so double whammy of good luck :D ) who DIDN'T look at me that way, who actually seems to care and listen and wants to help me get better. That, and he is a no-BS kind of guy...good in my book.

Well Lin Look at it this way, you will not be placed upon the Hollywood Walk of Shame next to Paula Abul... Yes she required her theraputic meds, but the white powder surely was not "pancake" foundation!!! Than again it may have been the concrete they were planning on using for her star, requirements were each star was to bring their own STRAW ! :pepsi: OOOpps somebody said Coke not Pepsi :Demonstration: I feel bad for her just like anybody else here with TOS or RSD though when you take it upon yourself to self medicate is another issue... not saying that took place either is left best to the new term for the super market tabloids now made fancy ..."paparazzi" enough is enough, may her pain be gone not just physically, but the med jokes... trust me at least you have have some assets, we have no money and little to look forward to, though we realize we have each other, the love of God and the hope of a cure most of all we have a sense of humor and take as wel as give !!!:D :D :D

Thanks for everyones input. I agree if they don't see it, can't fix it, kind of brush you off. I have been lucky to find good doctors. Have Dr. Togut who did a wonderful job on my surgery which I screwed up. My local neurologist is who sent me to him through Dr. Schwartzman. My local doc is great and understanding of pain but I want more. Sorry if I'm asking too much. I know we all want more. I don't want to go to the pharmacy and get looked at like "Your'e here again!" It makes you feel worse than you already do. I've had a pharmacist call doctors because they didn't think anything was wrong with me and didn't want to fill my script. Called another pharmacy and told them not to fill them. How humiliating!

MarkA sense of humor is VERY important in all of this. It's one of the only ways you can get by, besides this site.

Thanks everybody, Linda

"syndrome"
 

Hi guys.....

my 2 cents!

We have a syndrome which as already discussed is not visible on the scans or the tests and we are all suffering SUBJECTIVELY and this to me is our issue.
How can somebody else tell me how much pain I have or should have from a misunderstood and misdiagnosed syndrome.

After all a syndrome is just a collection of symptoms with no real things to see on tests or on us!!! Aside from our posture, our body asymmetry or our faces scrunched up in pain or our house that unless we are fortunate enough to have help to clean up is a bloody mess!!!! I want to hire someone to help but unfortunately I feel that my massages are more important for my sanity than a clean house ...cat hair/???? we have a cat???? lol !!! :grouphug:

So Why......do I put my make-up on before I go out, take a shower (only takes me about 40 min. (plus it feels so good and hot!!) ) do my hair and go out looking good, feeling like poop but I put my mask on so I don't get ostracized by the masses and pointed out as a freak who looks like hell....but then they might get the amount of pain I am in.....however I inherited a problem with having to look good no matter what!!

We are misunderstood and misdiagnosed and missed by our loved ones (as we do lose ourselves in our pain and hell....) we miss ourselves, we miss our jobs and on and on and on....

lots of love,
Victoria

Well, I sent 3 email "get well" messages to Texas Rangers baseball player that had the TOS surgery {Hank Blalock??} - but I suppose those didn't even get to him actually. I never got any reply.
Wasn't really expecting one though.
It would have been interesting to hear how how was doing post op.:cool:


My chiro is not well known or a big name but he knows his business.
The advanced PT guy that was a teacher to PT students he just had his own PT clinic.
I went to both of them independently on my own - I found the PT guy via his nice website that had TOS info on it. {that site is down now for some reason:( }
And the chiro - I totally stumbled upon his booth at the local county fair in 04 when i was in a major spasms flare:) He was so concerned and helpful right then - I felt I could trust him to help me and he did.

Neither one of them has a big name or mega bucks place- but I think that is an advantage- they aren't confined by the traditional Ins/Hospital constraints.

Well I guess I babbled on and got kind of off the topic-:o

But it got me thinking that these 2 guys DID listen to me and not blow me off. They actually did a lot more of the physical testing than any of the Drs ever did, and much more in-depth testing than what was done by the "traditional" PT/evaluations rx'd by the Drs.
But maybe most of all they really seemed to care about helping me to get better.
Not just -make an appt, see the dr for a few minutes and say a few words and poof see ya in a month. I hated that! most of that run around was for the w/c baloney..

hmmm I guess I still can get wound up about that:o

best of luck to all of you going thru that system:grouphug:

Hi guys, the same goes for us Aussies too. My physio told me I was just being lazy and a ortho surgeon told me I just didnt want to work. Then my hydrotherapy physio just stopped meeting me at the pool. We met every Thursday for 6 months then I went to a lesson and he didnt show, then I went to the next one and he didnt show either...no phone call no nothing. That was 4 months ago. (Yes he was in practise with the physio that told me I was lazy, so I presume they had a bit of a chat about me). I have no support in Australia! My local Dr just brushes me aside and gives me pain meds. I havnt even met anyone with TOS down here. Its sooooo frustrating as everyone keeps saying you look "normal". Little do they know the thumping in my head / neck that I can get on a bad day with every step i take or the pain from each breath I take. Had my whinge. Hope you are all pain free today. Ozzy

prayers and hugs
 

Hi Ozzy,

Wow you have been through a lot of garbage!! I hope all works out and you find somebody to help.....guys didn't Tonya from Oz have a good doc?????

Haven't seen her here is she on BT??? not sure anyhow perhaps this is a way to help Ozzy???????

Ozzy Tonya was in Oz think she was on this forum..or was it the other help me guys.....I am sure she had a doc...KNOW how big OZ is and not sure whre she is so not sure if this will help....but lets hope someone who has a memory will help me wiht this one....

Until you find help prayers and blessings from Calgary canada!!!

Love and hugs,
Victoria

OzzyThat is a shame to have someone just give up on you. Doesn't help morale. That's why, at least this support system helps us know we aren't alone and we understand. We all have different symptoms and pains but are going through the same thing. Take care. Linda

Trap muscle
 

Linda, I can relate to how tos is never discussed or written about. In the 6 years I have had tos, I maybe have seen it written about twice and then it is always described as being 'rare'.

Have you tried biofeedback for your trap muscle. Biofeedback can be used to train muscles to relax. Frequently, people especially with tos tend to raise their shoulders up alot and biofeedback is a way to curb this tendency. I know that I tend to raise my shoulders up alot which makes my symptoms worse.
Jeanne

Trouble Down Under...
 

hey ozzie,

i was thinking maybe if you PM towelhorse, he might be able to help you find some good TOS-savvy practitioners in australia. i realize the 2 of you may live thousands of miles apart, but maybe by putting your heads together and brainstorming a bit... well, you just never know.

i believe towelhorse is a workers comp case, too. i could be wrong. but he definitely has what we yanks refer to as a "can-do" attitude and that will stand anyone suffering with TOS in good stead. it pays to be creative with this nonsense we have going on physically. then when you add to it that legal crapola you guys have to deal with it, all the obstacles thrown in your path by big business in collaboration with the government... oh, best not to get me started on that subject.

i've been reluctant to even post on this thread, for fear i'll go off on some sort of tirade and not be able to stop! i think it was towelhorse who posted recently something to the effect that it seems rather suspect how they pretend there is all this "medical controversy" surrounding the TOS dx...

is it REALLY all that controversial, or is it just cheaper to pay a bunch of whore doctors to testify to that effect than it is to pay out on the myriad of labor claims that big business is flooded with in terms of RSI's - including but not limited to TOS - suffered by injured workers?!?!?!?

it's a political football/nightmare that affects ALL of us TOS'ers and how (and whether) we are treated by medical professionals, WHETHER we as individuals are involved in any sort of litigation or claim (W/C, SSDI, LTD, auto accident, etc.), or NOT!!!:mad:

and whether we have indisputable evidence of nerve injury or compression or not, as well.

politics and money, my friends. sadly, i have come to the conclusion that that is what underlies the so-called "controversy" here. of course, the lack of a clear diagnostic test, the high surgical failure rates, the chronicity, the fact that TOS is so intractable to to tx... all of that does not help and the lack of public awareness, not to mention the ignorance within the very medical profession itself re TOS, is appalling. and it somehow works together to keep us all feeling like mushrooms, doesn't it.

kept in the dark and fed a lot of *****!!:D

well no more. to arms, i say!!! puns be damned.

alison
"Be Brave"

JespAgain, I am alittle ignorant. What is biofeedback? The trap is what is my problem so I will do anything to relax it. As I said on my other post, Hubby and I rubbing bengay on each other's shoulders is our fun friday night!

Also, it is not only doctors not understanding us it is the fact that it is never publicized. Every day on talk shows it is discussed about some sort of health issue. Never have I seen anything regarding TOS. I just would like someone to address the issue.

biofeedback
 

Biofeedback is a modality that allows you to see muscle tension as a pattern on computer screen accompanied by a series of beeps. In biofeedback you're connected by electrodes taped to your skin (in this case trap muscle)(raising/lowering shoulders) to a computer that allows you to see how changes in your trap muscle increase or decrease muscular tension.

Usually, a threshold is set so that if your muscular tension remains below the set threshold, you will hear beeps and once your muscle tension goes above the set threshold then the beeps stop. Eventually this teaches you how to relax your muscles.

I have been doing biofeedback and it has helped me in learning how to keep my shoulders down. If you're interested in biofeedback ask Dr. Pertchik about it. He recommended me to a tos patient of his who is a biofeedback therapist and became interested in biofeedback as a way of managing her own tos symptoms.

JespThanks for the info. I just saw Dr. Pertchik last week. I will definitely ask him the next time I see him or talk to his office. Thanks, Linda