[watsonsh]

Hi guys,

You know I am a guniea pig and will try anything.

Today I went for Muscle activation therpy from one of two people that practice in So Cal. apparently some guys in denver thought it up. Gonna research it.

All I can say is OUCH!!!!! apparently I have muscles that hurt and have neuromuscular issues that I did not even know of.

An even though it hurt I am going to try some more because maybe it will get some of these muscles going. The guy is also a pilates rehab specialist so we will move onto that after a few more painful Muscle activation sessions.

I'll keep you posted

[ocgirl]

Shelly,
I'm sorry for interrupting your thread here, but I have some concern for you Shelly.
If you had a tos expert doc recommend this treatment then disregard my post.

I'm like you and will try new treatments as long as Dr Ellis thinks it might help AND it won't hurt me.
I read your post with some concern about the pain during the treatment.
When I first went to Dr Ellis seven years ago he gave me some excellent advice
about living with tos. This is it:

" Don't Do Any Thing That Hurts."

Dr Ellis has been the biggest help to me in learning how to live with tos.
OK, now if you want to throw out what I had to say it's ok. I feel better passing on some good words of wisdom from a very knowledgable tos doc. This info is from his website which has lots of good information.
Martha
************************************************** ***********

"The most important statement I can make is that symptoms that seem minimal in nature and include numbness, tingling, and aching pain following use of the arms need to be treated early and intensively. Of course, this is true for virtually any disorder, but I feel this is even more important here because of the consequent disability and suffering that occurs when, as happens all too often, these symptoms are ignored.

Given the difficulties many of my patients have encountered in obtaining appropriate treatment, it is important to remember not to follow any advice or perform any activities that result in increased symptoms, taking into account the frequent delay time. Damaging movements or postures can often take hours to a full day to result in increased symptoms and include activities such as driving, doing laundry, pulling weeds, opening difficult doors or jars, stirring pots, or using a keyboard or mouse even minimally. These and similar activities need to be avoided or compensated for. Initially, rest and avoidance of such activities bring about regression of symptoms relatively quickly; however, over time, symptoms appear more rapidly and recovery times lengthen."

W.Ellis M.D.
http://www.doctorellis.com/



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[watsonsh]

Hi Martha,

No worries, you are not interrupting my thread.

First off I sure hope your recovery is going well. I was so sad to read about your scare.

Let me clarify, a TOS doc did not recommend this treatment. My own research led me to his therapist...mainly because I wanted to try pilates again and wanted a pilates instructor that had rehab training. So he has pilates rehab training as well as this muscle activiation therapy.

I wish I was better at describing the pain I feel. Alas I am not good at it but I will try.

I actually do not feel any pain the TOS area or down the arms or in the shoulder. Actually right now and I caveat right now that the typical TOS areas feel better.

The concept behind what we discussed was not new to me but it was certainly surprising how much pain I actually had in those areas.

So his theory is that the larger muscle that are the core and support the trunk are not receiving the right messages from the nerves and are dysfunctional and weak. Therefore the smaller muscles throughout the body compensates and become overstressed...ie the neck and shoulder for me (for others it may be different)

I wont be very good at describing this but here goes. He did something very similar to Superjoyce in that he would work the muscles and teach it to contract and then relax and then the muscle would have more strength.

There was certainly pain from working the muscles. Hmmm how to describe...defintely burning on the skin and the muscle and especially where the muscle attaches to something. Hurt like a massage when they hit a sore part. And I could tell the weakest part was the abs and the hips and pelvis. And it would burn after, could not tell the burn from the muscle from the burn from the skin. He claimed that is was a neuromuscular response from the nerves that have not seen much activity. Which is true because I know that He really worked all the way around the abs like the obliques and some tranverse one that one was ouch! They hurt the most and I was surprised but it makes sense that they are not getting used and are weak and it felt like they when muscles are so super sore from lactic acid.

Johanna, it might be like how sore you are after te hellerwork.

I just hope the muscle remember the activation and continue on. My theory is that maybe I can take some pressure off neck and shoulder if back and core is strong. And get them used to nerve conduction again.

But the first step is to see how long the pain lasts to see if I want to continue.

Thanks for your concern. I'll let you guys know how it works.

[ocgirl]

Shelly,
Sorry to be so persistent but this info is important for people searching for any type of physical therapy that will not (usually) flare a tos'er.

You are probably aware of the physical therapy technique of Peter Edgelow P.T.
Dr Ellis thinks very highly of him. I followed his protocol for several years and it was the only physical therapy protocol that I could do and not get a flare up. It really helped loosen up my rigid spine, etc.

Dr Ellis is in Berkeley and Peter E is in Hayward. One time I flew up to Oakland and another tos'er from Canada met me. We both saw Dr Ellis for his Heparin B12 injections and photonic laser stimulation. Then we both went, met, and had a complete session with Peter Edgelow. It was quite a girl's weekend away, but traveling with someone with tos is really nice. If they aren't feeling well then you probably aren't either so you both grab your heating pads and take a nap before you go out again.

Peter's technique is really great. The thing I like most about is you buy an indoor/outdoor thermometer at like a Radio Shack. You take tape and attach the end of the wire to the end of your finger. Then you are able to follow the temperature of your hands.Say when you are out walking and the temperature of the finger that the thermometer is attached to drops, this lets you know that you need to stop the activity as your hands are getting cold( your body is getting stressed)

Also, when you slowly advance on his protocol, if you try a new exercise and the next day when you check the temperature of your finger and it is lower than before you did the new exercise; then you must stop the new exercise as your body is not ready to advance to a new exercise.

It incorporates a lot of biofeed back and your body tells you what you are able to tolerate (i.e. temperature of your finger goes down) This is what Dr Ellis says about physical therapy on his website.
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"The first step is to obtain appropriate physical therapy with an individual who has significant expertise in this disorder. I usually recommend Peter Edgelow (510.732.7881), www.edgelow.com, who has developed a technique that is effective. I encourage you to find someone with expertise in and knowledge of the techniques so ably described by David Butler in his “Mobilization of the Nervous System” and “The Sensitive Nervous System". If your physical therapist asks you to perform exercises that increase your symptoms consistently, find another one."
W.Ellis M.D.
http://www.doctorellis.com
************************************************** *************

[Jomar]

Dr Ellis's site was one of the ones that really cleared a lot up for me - i wish my dr and atty had read it!

I don't think i heard about the temp thing for edgelow therapy before- hmm more good threads that were lost in the BT crash - all the edgelow posts !

Nice to have it mentioned again and described too.

[watsonsh]

Thanks so much Martha for being persistant! I think its healthy to question and care for each other.

So no worries whatsoever. I am thankful for your concern for me and others and your persistance. And please understand I am in no way advocating that anyone should try what I do for myself. I certainly dont want anyone to flare at all. That would be terrible. Ok for me to flare if its my choice.

That sounds like an awesome girls weekend. I would like to go up and see Dr Ellis. Would even love to have a session with Edgelow although Super Joyce is amazing. And what this guy did yesterday was similar to some of the things Joyce did only on a much larger scale.

What are Heparin injections? Did they help? I read about it on his site and his site is where I got the idea for HBOT therapy. I have not heard of the photonic laser therapy. Could you explain more if possible.

That is an interesting thing with the thermometer and the hand. Great suggestion!

I think I am kind of a mutated (?? ) TOS person since I really do not have hand problems except the RSD burning in them and coldness from time to time. I dont really experience with great frequency numbness and tingling. And after 9 months of working with Super Joyce atleast my compression declined and pulses where found. But then I think mine has always been more about my neck and t spine and the muscles up there. I find a lot of similarity with Towelhorse's posts about the long thoracic nerve and even the suprascapular spine one (??might be wrong name). The reports I have had done show that mine is more proximal plexus than distal and more above the clavicle. My c-nerves roots are much more affected close to the nerve root itself.

It is such a bummer that we lost the posts from BT on the Edgelow therapy. Like Jo and Martha indicates I am sure we could all benefit from his therapy and insights.

I did buy and read both Butler books. A tough read but insightful. SuperJoyce laughed at me when I told her I actually read them.

Oh well we are all different yet the same in our struggles and pain. I hope you dont think I am not a TOSer because my pain is not the same.

And I was really trying to get to do rehab pilates to address my core muscles but he was an expert in both and thought the Muscle activiation would help before we got to the pilates. My core muscles are like flab.

So how do I feel today?? Like someone made me do 1 million situps. and I hate hate hate situps. But my neck and shoulders feel some relief and the core...well a smidge stronger. Hard to tell through the soreness there.

I look forward to getting to the pilates part. Just looking to struggle onward.

Thanks for listening guys. No worries is you do not agree with my approach to my condition. I just hope we continue to all learn from everyone, thats the purpose and the benefit. So if this works good and if not then I am happy to have tried it so I can tell you all to beware.

Now I am up for a trip to Dr Ellis and Edgleow and some wine in the wine country. Anyone?

Hope you all have a pain free day.

[Jomar]

this should fit in with the laser info-there's more in the useful links sticky too.
http://rj-laser.com/english/e_faq.html
http://rj-laser.com/english/index.html

[Peg24]

Shelley,

I'm all set for that trip...lets go!

Peggy

[ocgirl]

I'm up for the trip!

I know where to stay and where not to stay in Berkeley. I like staying on the Berkeley marina, I think it is the Radisson now.

I'll use any reason to go up and see Dr Ellis. If you need any type of disability, social security papers to be done DR Ellis writes great reports and he is fast.

Sometimes his reports almost beat me home, depending how long I stay after seeing him.
I know it was the great documentation of Dr Ellis that won my social security and long term disability cases.

[watsonsh]

OK thats three for the trip. Who else wants to come??