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

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

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

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!!!

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 *****!!

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 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