How to find good PT????
 

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

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??

PT
 

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

LJ
 

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 $$

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.:(

Pt
 

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

PT
 

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.

hellerwork, and osteopathic manipulations are two avenues you might explore.

good luck, sorry i don't have any great suggestions.

JOhanna

Lin Jane
 

O my,
Stretching bands is a absolute NO NO for TOS patients.
Thats what I meant that it took me 7 years and 4 therapy offices to find the right person.
I wasn't very helpful in responding what to do, huh?
Dr. Togut is a nautral i understand from many TOS patients here.
Listen to him.
You will get to the right pt in time.

In my experience DO's have a FAR better knowledge of TOS than MD's and PTs. They learn about TOS their 1st year. Where as MD's can get their license and still have no education in it.

PT
 

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

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.

physical therapy recommendations from Dr Sanders
 

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."

http://neurotalk.psychcentral.com/im..._invisible.gif http://neurotalk.psychcentral.com/im...ons/report.gif http://neurotalk.psychcentral.com/im...ost_thanks.gif http://neurotalk.psychcentral.com/im...c/progress.gif http://neurotalk.psychcentral.com/im...ttons/edit.gif

PT
 

Jeanne, your right, we do have the same doctor. I really like Dr. Pertchik. He had given me the name of two PT's and one was the one in Middletown. Unfortunately, I called the Little Silver one first. Dr. Togut gave me injections in my right shoulder and neck yesterday. Much worse today but am trying to be very careful. I had been better for 6 years so I got careless and was doing things I wasn't supposed to. Dr. Togut was not very happy with me.

My husband had rotator-cuff surgery today and is miserable. Trying to keep him comfortable. Luckily my 15 year old son is helping out. Getting him things and keeping him company. My mom took my other three to see a movie. Thank God for mothers.

Recently I read a post where someone had a picture of a sling that goes around your waist instead of over your shoulder. If you know, let me know, I'll probably start a thread. I need one for sleeping. Keep putting my arm over my head. Thanks, Linda.

OH, by the way Jeanne, I live in Tinton Falls.

I like Dr. Pertchik also. I've been seeing him for 6 years. The PT who said I was exercise intolerant was in Little Silver. One exercise that she had me do was lie on my back on a foam roller, extend my arms out and up and stretch a theraband. She asked me how it felt and I told her that my hands were feeling tingly and numb and heavy. She then looked at my hands and said that they were turning colors and that I should stop the exercise (not that I wanted to do it in the first place).

I used to sleep with my arms over my head also. I would use the sashes from bathrobes to tie my arms down. My boyfriend thought I was nuts doing that.

Hope your husband's recovery goes well. My boyfriend may have to have shoulder surgery soon.

We are neighbors. I lived in Tinton Falls until 2004 when we made the big move to Shrewsbury Borough.

PT
 

Jeanne, it's funny (not really) that you live close by. I bet we had the same therapist (Laurie?). I haven't called back. She had me do the same therapy and it hurt terribly. We own a business in Shrewbury, States Heating and Cooling.

Thanks to everyone for the help. I had been better for 6 years until this relapse. I had forgotten how this felt. I was so thrilled that I had been "cured". Pain free for so long. I even had a baby inbetween all the pain! Never a problem with pregnancy or carrying a baby around for a few years. I never thought a trip to Disney would do this.

Thanks again. Hey Jeanne, e-mail me sometime at LUNITED@aol.com. Maybe we can share some info or meet for coffee!

Linda

the laying on the foam roll should be good enough all by it's self.
Rolled up towels will do fine at home or even just lay on the floor totally relaxing.

place arms out at a comfy angle and use it as relaxing time while your shoulders and pecs release and drop with the help of gravity.

I live in CT and went through the same thing with PT. I was referred to a PT in NYC who has experience with TOS and was recc by occupational med at UCONN. Doc said no one in the area had exp w/TOS.

Private message me and I'll give you her name and number.

Withmore
 

I am fairly new to this and don't know how to Private Message. Help?
Linda

Lin- to PM someone, click on their username to the left of a post, and Private message should be one of the options. Alternatively, when you log in, in the very top righthand corner you should see Welcome, LinJane underneath that, you should see a link that says Private Message. Click that, and then you should be home-free!

PM
 

Thanks, I usually have to ask kids to do anything technological. It's kind of pathetic! Linda

LOL, Linda:p . You sound like me- I am pretty much a computer idiot! My son is grown and has moved out so my "techie" help is gone....:( I used to get myself, and the computer in deep doo-doo when we first got one and he'd have to come straighten the mess out.

As far as good PT, I can't really help you and the others have given you some good advice- especially about finding someone who knows what they're doing as far as TOS is concerned. I will tell you that I've been sent to PT twice (and both times it was BEFORE they figured out I had TOS- so maybe I would've had better experiences had they known....although somehow I doubt it:rolleyes: ) and I came out of both experiences worse off than I was when I went in. The second time nearly killed me. My PCP ordered 8 visits but after 3 I couldn't go back. I came home in more pain than what I went in with and was having to soak in a hot tub and take Vicodin afterwards. To me, there was something wrong with that picture....I hope you can find someone to help you.

redjpwranglegirl
 

Luckily for me my kids are still home to help me. As far as PT, I think I have given up. Dr. Togut says no exercise and I am going to listen to him. He says hot baths (we have a great hot tub out back) and careful with everything I do. Good excuse to get kids to help. I am afraid to use my right arm. Thanks again, Linda

This may help....
 

If you are able to find an expert in myofascial massage... trained by someone like John Barnes... you should find some relief from your pain. I live in Delaware and have found someone very dedicated and knowledgeable who has been quite a help!!! I'm not cured.... but I have weeks without pain ,which is a miracle. Take good care of yourself. I hope you are having some pain free moments. God Bless. Beth