[LinJane]

I started PT two weeks ago on the advice of my neurologist. He referred her under the impression she knew TOS. After two days I quit. I saw my neurologist today and explained that she was doing range manuvers and stretching, over the head and back. He told me not to return. I was in more pain after therapy than before. I see Dr. Togut tomorrow and am hoping he can help. My neurologist is hoping he can give me some information to give a therapist by me to learn how to deal with TOS patients. No one seems to know. It's very frustrating. As you all know, everyday living, laundry, making beds, dishes, etc. are very difficult. I can do them, put pay for it later. Trying to get my kids involved. My husband is having rotator-cuff surgery on Wednesday so he is of no help. I'm hoping Dr. Togut has some suggestions. Does anyone have a site with exercises?? I have two exercises that my doc told me about but not really doing anythin. Thanks, Linda

[Jomar]

If you can get Sharon Butlers book from a library or you can get the TOS program from her website. www.selfcare4rsi.com


Book Title :
Conquering carpal tunnel syndrome : and other repetitive strain injuries : a self-care program Book
... : a self-care program / Sharon J. Butler ; illustrated by Jacqueline ...

Author : Butler, Sharon J., 1950-
Publisher, Date : Berwyn, PA : Advanced Press, c1995.
ISBN : 188686702X (pbk.) - Description : xiv, 160 p. : ill. ; 28 cm.


stretches and relaxation in it and much info on understanding fascia - that was/is a big part of it for me.

can you go to another place and ask for one of the advanced therapists.

Those with a lot of letters behind their name usually have the most training- the one I took daughter to had .. C.H.F.I., A.C.S.M and she was very good. She did lean toward exercise as a final point to staying well but she did focus on listening and relieving the upper & lower back pain first, before any exercises/weight machines.
Daughter did have spasms in those areas and is mobile in her joints but not TOS although I think she could be susceptible if she ever does an aggravating type of job.

Can you describe your pains and areas that are the worst for you maybe we can think of specific helps for those??

[Peg24]

Linjane,

This is why I don't go to PT, but I know I should.

I find that most PT's I talk to know what TOS is, but is not really trained in knowing how to treat it.

They always want me to do things like the stretch bands etc. Big Time flare up!!!

Good Luck!

Peggy

[olecyn]

It has taken me 7 years to find the right doc of PT who knows what he's talking about and get me comfortable.
Well worth the $$

[Jomar]

I forgot to add that they should hopefully do heat/ultrasound/E stim/massage/infrared light or low level laser to reduce pain FIRST!!!

These take time - maybe weeks or longer and you really need to be very careful while at home.

{This is only my opinion but it seems logical to me...
If you are working or still doing problem activities those treatments may only put you in a "holding " pattern. Because as you work you are undoing most of the good the PT might be doing. Been there done that. I had been to 7 PT places thru all my various RSI. shoulder strains and then TOS. }
Your useage "Bank account" as Butler calls it.

Then some gentle stretches

Then maybe add some isometrics {self muscle tightening and releasing}
and/or use a biofeedback machine to see how muscles are acting and reacting

and if things are going well and pain is reduced and no increase of any symptoms then add some posture exercises - nothing very aggressive.

For me I found after getting out from the worst of the pain/symptoms I was able to do most of the stuff at home on my own.
triggerpoint, stretches, relaxation, posture work and even weights.

I did have to have my top ribs dropped down {they were stuck and raised from spasms} and the only one that figured that out was a teacher of PT & my chiropractor has been a long term help for me too.

But these approaches don't work for everyone.

[LinJane]

Thanks for your responses. Pt for me was stretching bands, etc. She did do ultrasound and some massage which felt good but with the other it triggered pain. Thank you for the book info. I will download and see what info i can find. I have already had a rib resection and scalenectomy and am hoping i am done with surgery. ALOT of stress because we own our own business and hubby is pushing me to work. I am trying to lay off as much as possible. Thanks, Linda

[LinJane]

Just saw Dr. Togut today and he told me for my problem DO NOT do PT or exercise. He was not happy about what they had me do. Caused more pain. I guess it is harder than I thought to know what to do. Right now I will just be very careful.

[jesp]

LinJan,

I also have tos and live in Monmouth County, NJ. I believe that we probably go to the same neurologist in Tinton Falls (Dr. Pertchik). I know that Dr. Togut said no PT or exercises, but if you just want to go to PT for heat and massage then try Preferred Care Physical Therapy in Middletown. The PT is Michelle Vandel and when I went to her for tos and other ailments she didn't have me do many exercises that flared me. I have the feeling that the therapist who made you worse is the same one who made me worse in 2004. I ended up quitting after she made me do alot of above the shoulder exercises with therabands and then labelled me exercise intolerant. Good luck.
Jeanne

[johannakat]

another note- even the TOS specialist that Dr Ahn reccommends made me flare horribly. It is a very tricky proposition

the PT i really like now has a lot of training in osteopathic methods. Also you could look for a PT who is trained in Feldenkrais. THere is of practitioners at:

http://www.feldenkrais.com/classes/f...practitioner1/

Some are also PT's as indicated in their listing.

One who knows feldenkrais shoudl be sensitive to the needs of the average TOSser, i would think.

[ocgirl]

Deborah from the old Braintalk forum posted this, she was given these by Dr Sanders when she saw him at an appointment

***************************************

"The initial treatment of TOS is certain types {or modalities} of physical therapy {PT}. Over the last few years, we have learned that a few modalities of PT are effective, while MANY OTHER modalities are ineffective or can make the symptoms WORSE. The recommendations below are based on the experience of OVER 1000 patients who have received therapy for TOS.
RECOMMENDED MODALITIES:

1.) Neck stretching exercises. Holding each stretch a minimum of 15-20 seconds, using your hands to help hold the head in the stretched position, and NOT trying to stretch through severe pain. If a stretch HURTS, reduce that range of stretch. Do NO MORE than 3 repetitions at one sitting; do this 2-4 times a day or more.

The 2 positions that are useful for TOS are:
1) Neck rotation and
2) Head tilting.

2.) Posture correction. Proper posture for people with TOS includes:
1) Head back,
2) Chin down and,
3) Shoulders relaxed in a neutral position, NOT STRETCHED BACK SO THAT THE SHOULDER BLADES APPROACH EACH OTHER, This position should be maintained as much of the time as possible when standing an sitting.

3.) Abdominal breathing: Practice this lying flat on your back on the floor.

4.) Nerve glides.

5.) Feldenkrais method. This is a total body approach of slow gentle movements of arms and spine with an emphasis on learning what motions bring on symptoms in your body and developing ways to avoid these motions. There is a national registry of Feldenkrais practitioners across the United States and practitioners in your area can be found on the Internet by looking up: www.feldenkrais.com

MODALITIES THAT OFTEN DON'T WORK AND CAN MAKE SYMPTOMS WORSE:
1. Strengthening exercises
2. Theraband use
3. Resistance exercises with machines
4. Neck traction
5. Exercises with weights
6. The concept of "No pain - No Gain"

The above are guidelines that have been effective in TOS patients. They will work for many people, but not everyone. Additional modalities of PT are indicated for other conditions that accompany TOS, such as fibromyalgia, shoulder tendinitis, cervical spine strain, and others.

Therapy must be individualized and it is best carried out with the guidance of a physical therapist plus additional training in the Feldenkrais method, usually with a different therapist.

Much more information about TOS can be found in the book, "Thoracic Outlet Syndrome - A Common Sequela of Neck Injuries", by Dr. Richard Sanders. The book describes the causes, symptoms, methods of diagnosis, treatment, results and complications of treatment, and other aspects of TOS."