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rohrer01
04-12-2012, 02:36 PM
I went to PT yesterday. I was referred because I think I fall too much. It was quickly determined that my falls are due to my lack of flexibility from the scoli and nothing can really be done about it except me being more careful. I've always had two left feet, so to speak, and trouble with proprioception. We all know that is common amongst us.

So the appointment turned more into a pain management type of thing. The PT had called my doctor that is doing my treatments and asked him about deep muscle massage. My doc told him NO WAY, she couldn't handle that. My PT told me this and asked me what my thoughts about it were.

I am scheduled, or soon will be, to start Botox injections in my neck and upper trapezius for Cervical Muscle Dystonia. Nothing, and I mean nothing can seem to break up that mass on my left upper trapezius, therefore the Botox. So, telling this to my PT, he thought that the massage could break it up. My thought was that maybe I could try it in conjunction with the Botox. I told him we could try it and scheduled it for several visits a few weeks out.

My thoughts are that I could have the deep muscle massage in the areas where I won't be getting Botox. They will be focusing ONLY on my neck and I have so many other places that I have problems with muscle spasm. But, after the poking around that he did, I am sooo sore! I didn't even get the massage. It was just to find the areas that need it. I'm wondering if the poking around made me sore because it was just poking around and irritating, or if the massage is going to leave me feeling worse because of prolonged poking around?

I'm a little hesitant, knowing what my doctor said. But this is something I've been wanting to try for a very long time and could never afford it, being that it's not ordinarily covered by my insurance. I didn't know that PT could do it. He said if he coded it right that I won't have any problems with my insurance. Does anyone have any experience with this? How painful is it?

Thanks in advance for any and all advice.

Rohrer01

loves to skate
04-12-2012, 03:03 PM
Hi Rohrer,
My guess is that in the beginning you would be in more pain after a message, but maybe after time it would get better. Maybe they could start with a more gentle message in the beginning until you get used to it. I have only experienced an all over message just once and was in lots of pain the next day but was warned that would happen. It felt wonderful when she was doing the message. I didn't go back because it was a freebie and couldn't afford another one. I did have a muscle that would spasm in my back and a PT stretched and messaged it and I never had another spasm in that muscle again. The PT told me I never would have been able to stretch that muscle out by myself. She was a God send.
Let us know what you decide to do.
Best wishes, Sally

Roxanne1979
04-12-2012, 06:35 PM
Hi -
I had a deep tissue muscle massage years ago, and I was in horrible pain for two weeks. Normally I have Myofascial Release massage done, but went to someone new. I have found Myofascial release massage to be very helpful, but I would never try deep muscle massage again. But everyone is different, what works for one person may not help someone else.
Roxanne

rohrer01
04-12-2012, 08:35 PM
Thank you Sally and Roxanne. I have had an all over body massage once. It was heaven and I was not a bit sore afterward. It was a present to me from my grandmother before she died. I had gone out to visit her just weeks before her death and she ordered one up for both of us. It was such a nice thing to do and such good memories. I was in pretty severe pain at the time and was on fentanyl and vicodin. So I think if it were going to hurt, it would have hurt then.

As far as the myofascial release, I've had that done, too. It didn't do a thing for me at all. She just put her hands under me and did some very gentle movements. It was relaxing, but not therapeutic. I think I will "try" it once or twice to see how it goes. But I'm very aprehensive. I'll ask the PT what to expect. If he's gentle about it, I know he can get in there deep. My PCP taught me how to do pressure point therapy and I taught my hubby. You can put some very powerful force on a muscle to break up a spasm if you start lightly and gradually increase the force. If that's the way he does it, then I'll be okay. If it hurts too bad, I'll just have to stop the session and cancel out. I'll keep you all informed.

Thanks again,
Rohrer01

rohrer01
04-17-2012, 04:59 PM
Well, I had my first "massage" today. OUCH!!! I was having particularly bothersome sciatic pain during the night and early morning and he attacked my hips trying (and succeeding) to make the pain shoot down my legs. He said it was a trigger point and that the radiating pain was muscular (I'm not so sure I agree with that as it is a toothache kind of pain). I was quite positive he was hitting inflamed nerves. I'm sure I'll have bruising, which he said to expect. He was actually trying to cause bruising in order for my body to send blood flow to the area to heal it from what he even called the attack. He worked a little on my upper back and neck. The lower curve apex was almost too painful to tolerate, but I white-knuckled it through. It was surprisingly the outside muscles (convexity) that hurt and not the muscles on the concavity. This is NOT how I expected him to go at it. I realize that the muscles are deep, but a gentler approach without a sudden knuckle into my most tender areas would have been nice! I'm brave. I'll keep it up. But one thing's for sure, I WILL be taking pain meds right before I go on Thursday!

I'm going to have to do some research on just what chemicals are involved in holding these muscles in the contracted position. We discussed that a bit, but he didn't tell me which ones. I'm just not sure what I will find. If the efficacy of this treatment is tried and true, then it will be worth it to continue. Otherwise, I'm just putting myself through torture for nothing.

rohrer01
04-22-2012, 07:37 PM
Either this practitioner is sadistic or deep muscle massage isn't for me. I can stand quite a bit of pressure on the muscles if it's done properly and gradually. Anyway, I'm flared up. The second treatment was worse than the first. I saw my doctor the next day and he put a swift stop to it. I think that a massage therapist would have been better.

flerc
05-02-2012, 12:52 AM
Roher, do you you really have dystonia? It's really good that you may know the cause of your problem!
How did the doctors the diagnosis? I’m thinking in this disease since I heard about some Spain doctors discoveries and other studies http://www.scoliosis.org/forum/showthread.php?11202-neurological-cause
http://www.scoliosis.org/forum/showthread.php?10489-Dystonia-is-the-historical-current-cause .. and then I began to note something like tics in my daughter.. I wanted to be sure if she really has dystonia but I arrived to the conclusion that there is not an exact study showing it and probably she has a very soft kind of dystonia (as Spain doctors believe is the scoliosis cause) so probably studies will not show anything... but anyway it would be good for me to know what kind of study did your doctor. .
I have read about some people with dystonia getting good outcomes after a surgery in an Spain Hospital, but it really scared me.. it consists in putting a chip in the brain.
I hope you may find a good therapist! Did you prove with something as Rolfing?

rohrer01
05-02-2012, 11:02 AM
Flerc,
They didn't do anything special except examine my musculature. I do have very smal tics to the left, but I haven't mentioned them and I don't think they've noticed them. I've had them for a long time, meaning I don't remember when it started. They say my dystonia is a result of the scoliosis. I've also read that the surgery for scoliosis will "fix" the dystonia, but that doesn't seem to be an option at the moment. They are using Botox to try to relax the muscles. My doctor directed my to the National Dystonia Research Foundation for more information. I would not subject your daughter to the brain electrical stimulation probes unless her dystonia is severe. I'm sorry, but I don't remember what rolfing is.

Sincerely,
Rohrer01

flerc
05-02-2012, 12:29 PM
Roher, I never heard before that the scoliosis may provoke dystonia.. it would be really a bad new. Yes the contrary and seems to be more credible.. at least for me. The studies suggests that people with scoliosis has a soft kind of dystonia that seems to be the cause.. What seems to be true is that a real dystonia provoke scoliosis..the Drs. did not considers that possibility in your case?
They only performed a clinical examination? I believed that only complicated studies might determine dystonia.. I have heard something like that time ago. Do you know how are the brain electrical stimulation probes? Surely frightening.. but not more than a chip in the brain as is used to cure this disease..

Rolfing is one of the ‘relaxers’ therapies (in opposistte to the strengthening as Pilates) http://en.wikipedia.org/wiki/Ida_Pauline_Rolf

Thanks!

rohrer01
05-02-2012, 12:57 PM
Flerc,
I brought the subject up to my doctor about possibly the dystonia causing the scoliosis and he didn't agree. However, in my thread on dystonia, I believe I cited an article of scoliosis causing dystonia and another person cited an article where dystonia caused the scoliosis. I really don't think they know for sure which comes first in people with scoliosis. I did find that the rate of dystonia is much higher among scoliotics than the general population. There are, of course, other diseases that cause dystonia such as cerebral palsy and other disorders. Sometimes dystonias come on as a result of a minor trauma. I watched a video of a case where someone kidding around grabbed a woman around the neck from behind. From that day on she couldn't quit shaking her head. She was a dancer and it ruined her career. My step-dad does that to me EVERY time I see him. My mom yells at him for it because it hurts my neck. I don't think a lot is known about dystonia, but for sure, mine is NOT the kind where I am bothered by severe tics. Like I said, it's very minimal and I never even told my doctors about it and doubt very much that they hae noticed. So brain surgery would not solve my problem. My problem is that my muscles are basically knotted so hard that they almost feel like stone at times. It's very difficult to soften these muscles with trigger point injections, which only last at tops of 6 weeks. The Botox is supposed to last from 3 to 4 months and is a standard treatment for people with my kind of dystonia, so we'll see. They are hoping this therapy will lessen my headaches, which are quite bad.

flerc
05-06-2012, 05:02 PM
Roher surely is difficult to know what was first, if dystonia or scoliosis, but I know about people with a very great curve and as I know they have not dystonia, but I believe the contrary is not possible… at least with a so much significant dystonia since teenage or childhood. I’m not sure but I believe that I have read about some cases of scoliosis beginning in adulthood, after an adult dystonia aroused.
I believe is so much credible the theory of at least a very soft kind of dystonia causing IS.. some people says that the first trigger is a brief cerebral palsy.
Many things seem to provoke dystonia. Probably it was not only a physical but also an emotional effect in the case of that dancer. .You must to not allow your step-dad any more your to do it with you. You should try that your Dr. say him that is something really bad for you and if he loves you of course he will never do that again.. and if not.. you may do something worst to him any time he do that.. it would be very convincing.

I have read that intoxication may lead to dystonia. Meds seems to be the main source, but also food.. do you eat so much fish or do you have amalgams in your mouth?
My father has essential tremor, other neurological contraction disorder, and he is consuming since some decades ago meds for high blood pressure.. I have read that those kinds of meds contain mercury.
Your muscles may feel like stones, but this surely is not a property (like in bones) but a state. And it seems that only cerebral orders may change the state. . even hypnosis seems to works sometimes..and surely also Botox.. but as all around scoliosis seems to be multicausal.. at least at some level (secondary causes). I’m sure that emotions and nutrition has much to do.. I’m almost sure I never noted a tic in my daughter during holidays. I’m worried because I have read that a deficiency of B12 Vitamin may be a dystonia cause and I believe she not consume nothing at least of the ‘good kind’ of B12 and probably very few of the ‘not so good’ B12. . also because she has a small downward descent of the cerebellar tonsils, although I’m not sure if it has to do.. at least I have not found yet nobody relating both problems http://chiarione.org/chiari.html

Maybe you has not dystonia but some kind of myoclonus.. We should to know why the spain surgery (a chip in the brain) cure the dystonia.. what exactly does. . but anyway, I think that relaxing and detoxing activities should to be good for you.. a good complement to botox.
Massages with essential oils, should to be great.. also thermal waters.. and everything that lead you to enjoy the life. . of course is not so simple suffering a health problem but I think you should try to move in this direction.. to laugh should to be something good..
I believe that Eutonia should to be the more relaxing of all the muscular oriented therapies.. someone said me she had to leave it and begins with something hard as Pilates because the extreme low tone leaded to back problems.. Also Craneosacral osteopathy seems to be good ..I suppose a regulation of the cerebral spinal fluid should to be something relaxer.

Surely all what you are planing to do should to works.. I hope that.