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Thread: Muscle Dystonia

  1. #1
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    Muscle Dystonia

    Here's a short little article from the NIH about muscle dystonia and scoliosis:

    http://www.ncbi.nlm.nih.gov/pubmed/12654970

    The reason I'm posting here is because I was diagnosed with cervical muscle dystonia yesterday. There is a Dystonia Medical Research Foundation that I haven't checked out, yet. According to this small study cited above, people with scoliosis are more succeptible to having it. I feel like I'm finally getting somewhere. It seems that in us scolis, the fix for the dystonia can be fixing the scoliosis. I tried continuing this discussion on my own thread, "I have some imaging CD's", but because the topics seem to change on personal threads, no one has responded to the topic of dystonia.

    It seems interesting, though, that I have had tics in my left shoulder/neck/head for quite a while now (I even have them in my hands which affects my fine motor coordination). I never mentioned it to the doctor because they are very mild and not very bothersome when compared to the bigger issues that I face. After looking up dystonia, as instructed to do by my physician, I found out that these tics are related to the dystonia. So now, I'll have to mention them. This is where most of my pain is coming from, also (not the tics but the SEVERE muscle spasms caused by the dystonia).

    The "treatments", there is no cure, are Botox injections, deep brain stimulation, and nerve severing. I've wanted to try Botox all along, as Jrnyc has had such success with it. Well, it seems I'm going to get to try the Botox injections after all. This will decrease my exposure to steroids (we all know what happened to Jrnyc from chronic steroid use). Botox can cause flulike symptoms in some people and I stand the risk of not being able to lift my left arm until it wears off, a risk I'm willing to take.

    I thought someone in the Research Section may know more about this disease than me. The only two ways to come down with this disease that I have found so far are: #1) inheritance, and #2) injury. I don't quite know where I would fit in there. I'm really wondering if it is an inherited part of a type of scoliosis, like a double inheritance or something. This might be the explanation why scoliosis is painful in some people and not in others. There could be a subgroup of dystonic scoliotics that have pain, while the majority do not, thus leading the majority of scoli surgeons to say the angering statement (to those of us who hurt), "Scoliosis doesn't hurt." I'm just thinking out loud here.

    I'm also wondering if this will give my surgeon something more to think about in terms of correcting my "high and tight" curve. I've been pondering over whether or not to go back to him just yet. It's been two full years and he initially told me to come back in 18 - 24 months (I have his notes where he states that). But then he sent my doctor a note that said five years. So I don't know whether I should wait the five years or not. They are monitoring my scoliosis at the hospital where I'm going. Even though they measure the curves MUCH smaller, the radiologists report said of last years x-ray that there was progression noted in the lower (compensatory in my case) curve. I just don't know if this new Dx would change the way my scoli doc looks at my condition or not.

    Because of my recent surgery, my deductible and yearly out-of-pocket maximum have been reached. So finacially, this would be a good time to have surgery. I have a $2 million dollar lifetime policy that is getting eaten up rather quickly. Right now I have good doctors that are working with me and if I use this insurance up I'm done. I just don't want to use up my insurance on these very expensive shots that are for life and end up with not enough money to cover the scoli surgery that my scoli doc says I will eventually need. My only hope then would be if my hubby's employer switches to a different insurance company. But then I will not be able to see all of the specialists that I am currently seeing for this and other conditions (I have a lifetime female problem, too, and I really love my doctor). I would hate to start over with all new docs. Sorry the insurance thing is off topic, but Botox is very expensive. I need to sit down and figure out how quickly this will eat up my insurance. This is something I definitely NEED to talk to my doctor about.


    Any input or experiences with Dystonia are certainly wanted and more than welcome.

    Rohrer01

  2. #2
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    Quote Originally Posted by hdugger View Post
    Interesting find, and I hope it leads to some more successful treatment of your pain.

    On a side topic, I believe the lifetime maximum was lifted as soon as Obama's healthcare plan was put in place. I don't know how that will shake out if parts of the plan are repealed, but it's possible it will stay lifted.
    It's not lifted on my policy. It states it in black and white. If it were repealed, wouldn't they have to change our certificate of coverage? It's frustrating, because I could go to work for that same hospital, and my insurance through them would be worthless still if I go over the $2million through my husbands work. So it wouldn't even do me any good to go to work because they are a primary employer in this area and most people have their insurance. We'd either have to go through the other main hospital's insurance or move. The other hospital is inferior to the one we have now, except it is affiliated with Mayo Clinic in Rochester. But, I've also had that insurance at one time, too. So have used up part of my $2million there, also. I had a bunch of heart stuff done at Mayo Clinic in Rochester, MN, and that's a very long trip from where I live.

    But, yes, I hope that we can get somewhere with my pain now, whether it be lifetime Botox or finally qualifying for surgery. I see so many people with curves smaller than mine getting surgery all of the time. So I really don't know what's up with my doc. Maybe mine's too hard to do. I'd rather not have the surgery than die. I'm very skinny and he said I would feel the rods and basically have to come in for revision in a year or so to have the hardware removed once fusion took place. But I knew that. He told me that from the first time I met him. I'm just really wanting to know IF fusion really does break up the dystonia like I read. I'd like to hear some real life examples, but am thinking that this may be kind of a "new" realization. My dystonia was specifically diagnosed as "cervical dystonia as a result of upper thoracic scoliosis". So if anyone else out there has the same diagnosis, I would really like to hear from you. I know I'm looking for a needle in a hay stack. But I can hope. The area that will get Botox is my upper trapezius if that helps anyone.

    Thanks again,
    Rohrer01

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    rohr, as far as skinny is concerned, i saw surgeons when i was down to 87 pounds on 5'4 frame...
    (am up to 94 now)...they all said to try to get to 100 pounds minimum (for me), but none refused
    surgery...they did agree removal of those screws at the hips...forget what they are called...
    would probably be needed after fusion took place...like a year later...
    also, Dr Neuwirth said, when i asked, that he would discuss possibility of pediatric size screws
    IF necessary, but none refused to do surgery just due to weight....

    jess

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    Quote Originally Posted by jrnyc View Post
    rohr, as far as skinny is concerned, i saw surgeons when i was down to 87 pounds on 5'4 frame...
    (am up to 94 now)...they all said to try to get to 100 pounds minimum (for me), but none refused
    surgery...they did agree removal of those screws at the hips...forget what they are called...
    would probably be needed after fusion took place...like a year later...
    also, Dr Neuwirth said, when i asked, that he would discuss possibility of pediatric size screws
    IF necessary, but none refused to do surgery just due to weight....

    jess
    He hasn't refused simply due to weight. He honestly believes it will make my pain worse. I really don't think he has full understanding of the scope of my pain. He has never seen me in a full flare-up or not medicated at all. He basically said if my pain is a constant 8 instead of a 4 (which was what I rated it at one of my visits), then I will be happier with the 6 he will leave me with. My 4 might be someone else's 10. I look at the pain scale in terms of a exponential scale and NOT linear. A 10 is what I compare to my c-section without anesthesia, and YES I have 10's! Dystonia hurts like dickens! (at least I have something to call these horrible spasms) It's very hard to describe pain and I absolutely hate being asked.

    Tuesday, when I went in, they asked me and I said like a 4 or a 5 because I had just taken percocet. But my BP was WAY up along with my pulse. This only happens when my pain is severe and the nurse acted like she didn't believe me. But compared to the night before, a 9 or 10, I thought a 4 or 5 was fair. When the nurse made me choose between a 4 or a 5, I'm like, "I don't know" so she put 5 because she could see my vitals were wacky compared to what they usually are. My pain, in all reality was probably a 7 or 8, due to my physical presentation. When you have that kind of pain often, you tend to minimize, or at least I do. I don't know why I do it. Everyone tells you to exaggerate, but I feel dishonest if I don't minimize.

    Like I said, he discussed hardware removal because of the thinness. I'm 5'7 and 117#. I can't gain weight. There is something wrong with the GI. So I need to get that assessed and hopefully fixed so I can gain some weight before I do anything else. I was actually up to 136# at one point a few years ago. With my three successful pregnancies I weighed 142#, 139#, and 132# at delivery. So for me to weigh 136# NOT pregnant was a little difficult for me (anorexic tendencies) but I looked and felt great! You have to remember that when we scoli's refer to our heights, that's really distorted, since we are actually "taller" than our actual height. My doc's told me at 16 years old that I would really be 5'9" - 5'10". That drastically changes the BMI. But we tend to be squishy in the middle, which really hurts the self-esteem! No matter how hard we "work-out" we tend to be squishier in the middle than we would like.

    Totally off-topic for Dystonia, but....Oh well! ;-)

    I sent you a PM.

  5. #5
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    What is the measurement of your curve(s)? Is your spinal surgeon a scoliosis specialist?

    Warmly
    Doreen
    44 years old at time of surgery, Atlanta GA

    Pre-Surgery Thorasic: 70 degrees, Pre-Surgery Lumbar: 68 degrees, lost 4 inches of height in 2011
    Post-Surgery curves ~10 degrees, regained 4 inches of height

    Posterior T3-sacrum & TLIF surgeries on Nov 28, 2011 with Dr. Lenke, St. Louis
    2 rods, 33 screws, 2 cages, 2 connectors, living a life I always dreamed of - now pain free!

    http://thebionicachronicles.blogspot.com/

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    Doreen,
    Two years ago, my measurments were 46* and 38* which was progressed in five years from 40* and not worth measuring on the lower one, I think I last read it was like 28* or something, but don't quote me on that. Last years x-ray report said the lower curve had progressed. I can't compare the measurements because they aren't in the same ballpark. But the radiologist noted slight progression in the lower curve. I haven't had scoliosis x-rays this year. Yes, my surgion is an SRS doctor in Madison, WI. His name is Clifford Tribus. I don't know many people on here that have had much experience with him. The couple that I've contacted have had either neutral or bad reports. I talked to one of his revision patients in the office during my wait, and she liked him very much. I think you will find that with just about any doctor.

    Sincerely,
    Rohrer 01

    Oh, and there are all the recent x-rays on here in the "I have some imaging CD's" in the non-surgical section, including the ones I don't have proper measurements for. You can definitely see progression.

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    Quote Originally Posted by hdugger View Post
    Googling, I came across a review article - http://www.slm-neurology.com/uploads...l_Dystonia.pdf - plus one reference on medhelp which drew causality the other way - primary dystonia leading to scoliosis.

    Your scoliosis has always seemed non-typical - maybe it can also be resolved in non-typical ways.
    This is pretty much what I simplistically implied in my earlier comment. So there really may be something to this after all. I'll have to find the paper that correlated the resolution of dystonia with the correction of scoliosis. I don't have time to look it up right now, but I will. Thanks! It was very interesting, especailly with the pedigree showing the association.

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    Interesting Article

    Here's an interesting article:

    http://www.jaoa.org/content/104/6/244.full

    Read past the Kenedy stuff. It gets into the meat of what causes "trigger points". Read on and you will find that, at least these researchers, find this to be a heritable disorder. It also arises in response to an "unstable joint". Is not scoliosis many unstable joints? The biochemical pathways are nicely described here, too.

    I will summarize from the articl and what "I" remember from muscle physiology. (Dr McIntire will probably shred me on this one if he read this)

    Basically there is a release of too much neurotransmitter (acetylcholine) that keeps the muscle starved for ATP (its energy source - adenosine triphosphate used in aerobic respiration). This depriviation causes a vicious cycle of Calcuim blocking (needed for proper muscle contraction during polarization and repolarization of the muscle which is what makes the muscle contract and expand - it's a neat kind of ratcheting system that depends on + or - charges / not covered in this article but from my memory of mucle physiology). They therefore get "stuck" in the contracted state being deprived of Calcium, ATP, and blood flow, which in turn causes a physical change in the muscle fiber (it gets bigger - this is why body builders avoid aerobic exercise) and a build up of lactic acid (a biproduct of anaerobic respiration which results when there is not enough ATP for aerobic respiration). This build up of lactic acid in the muscle causes pain. Needling releases the neurotransmitter (acetylcholine), so that proper function can return and also eliminatine the painful lactic acid build up, at least for a while.

    They correlate this to the practice of accupuncture ( I never bought the merridian explanation and I knew I would eventually stumble across something tangible to explain why accupuncture works). Botulinum toxin stops this cycle, therefore it makes sense to use this on unresponsive muscles (in my opinion).

    So here's my take on the whole thing. Since this appears "heritable" in some cases as does scoliosis, it would make sense that muscle dystonia would play an integral part in scoliosis, whether the dystonia (severely frozen aka trigger point muscle) comes first or comes as a result of protecting the unstable spine.

    I would like some feedback on this from those that follow what I'm trying to express here. If I am incorrect in my interpretation of this article or my recollections from years past, please correct me. I tend to zoom through things as my time is limited.

    Rohrer01

    (things in parenthesis are what I remember about how muscles work or my opinions with the exception of the term acetylcholine)
    Last edited by rohrer01; 04-19-2012 at 05:34 PM.
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    I think your hypothesis is very interesting!

    I cannot for the life of me remember anything from Bio 2 about muscle function but what you wrote seems reasonable.

    I think Dingo posted percentages of dystonia patients with scoliosis. Now what we need is percentages of scoliosis patients with dystonia. If the former is big and the latter is small to vanishing then the dystonia seems to be driving the scoliosis in those patients. If so then it would not seem to be a candidate for IS etiology research. If we review Jack Cheng's list of top etiologies being investigated as of a few years ago, I don't recall this being among them though it might be related to the brain abnormality ones. It may have already been ruled out or determined to be of a lower probably than the 6 etiologies he listed.

    And I wonder how many cases of dystonia-driven scoliosis are actually structural or begin as non-structural at least.

    Last, what about all the hormone and other intricate biochemistry that is NOT related to this putative brain/muscle issue? There is plenty of work still going on with that stuff. I'm not saying it is on the right track but those guys seem to think it is. For years and years and probably with knowledge of this brain/muscle hypothesis.
    Sharon, mother of identical twin girls with scoliosis

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  10. #10
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    Quote Originally Posted by rohrer01 View Post

    Basically there is a release of too much neurotransmitter (acetylcholine) that keeps the muscle starved for ATP (its energy source - adenosine triphosphate used in aerobic respiration). This depriviation causes a vicious cycle of Calcuim blocking (needed for proper muscle contraction during polarization and repolarization of the muscle which is what makes the muscle contract and expand - it's a neat kind of ratcheting system that depends on + or - charges / not covered in this article but from my memory of mucle physiology). They therefore get "stuck" in the contracted state being deprived of Calcium, ATP, and blood flow, which in turn causes a physical change in the muscle fiber (it gets bigger - this is why body builders avoid aerobic exercise) and a build up of lactic acid (a biproduct of anaerobic respiration which results when there is not enough ATP for aerobic respiration). This build up of lactic acid in the muscle causes pain. Needling releases the neurotransmitter, ATP (acetylcholine), so that proper function can return and also eliminatine the painful lactic acid build up, at least for a while.

    They correlate this to the practice of accupuncture ( I never bought the merridian explanation and I knew I would eventually stumble across something tangible to explain why accupuncture works). Botulinum toxin stops this cycle, therefore it makes sense to use this on unresponsive muscles (in my opinion).
    Not too bad of an explanation actually. A few small points (that don't really alter your overall main point at all). ATP is the energy we use in every form of activity. HOW the energy, i.e. ATP, is made is the 'areobic' or 'anerobic' part.

    Lactate is produced in the muscle during anerobic activity and can also be used as fuel. It is debated when, where, how lactic acid is produced and if that's the cause of muscle pain during contraction. Lactate is a bi-product when oxygen is in low supply.

    ATP is necessary for muscle contraction AND muscle release. The myosin head will not release from the actin filament until an ATP binds to it. So when you run out of ATP, your muscles kind of stop working and just stay where they are.

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    Quote Originally Posted by rohrer01 View Post
    ...a build up of lactic acid (a biproduct of anaerobic respiration which results when there is not enough ATP for aerobic respiration).

    I would like some feedback on this from those that follow what I'm trying to express here.
    I can follow, great post, but discussion is "above my pay-grade".

    Pedantic tangential stuff: is should be anaerobic "metabolism", not "anaerobic respiration". What you are describing is the respiratory threshold which occurs when your metabolism switches to more anaerobic fuels (they're always used, even in aerobic activity, but the body reaches a lactate threshold then switches at the saturation point. You can develop and push the LT higher. We've found that the LT and the respiratory threshold, although different, coincide within seconds. The respiratory change can therefore be used as a proxy for the LT.
    07/11: (10yrs) T40, L39, pelvic tilt, rotation T15 & L11
    11/11: Chiari 1 & syrinx, T35, L27, pelvis 0
    05/12: (11yrs) stopped brace, assessed T&L 25 - 30...>14lbs , >8 cm
    12/12: < 25 LC & TC, >14 cms, >20 lbs, neuro symptoms abated, but are there
    05/13: (12yrs) <25, >22cms height, puberty a year ago

    Avoid 'faith' in 'experts'. “In consequence of this error many persons pass for normal, and indeed for highly valuable members of society, who are incurably mad...”

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    Quote Originally Posted by Kevin_Mc View Post
    Not too bad of an explanation actually. A few small points (that don't really alter your overall main point at all). ATP is the energy we use in every form of activity. HOW the energy, i.e. ATP, is made is the 'areobic' or 'anerobic' part.

    Lactate is produced in the muscle during anerobic activity and can also be used as fuel. It is debated when, where, how lactic acid is produced and if that's the cause of muscle pain during contraction. Lactate is a bi-product when oxygen is in low supply.

    ATP is necessary for muscle contraction AND muscle release. The myosin head will not release from the actin filament until an ATP binds to it. So when you run out of ATP, your muscles kind of stop working and just stay where they are.
    Thank you for the correction. It's been years since I studied this stuff and, well, never used it. Yes, ATP is needed as energy for everything. It's the lack of oxygen that forces it into the anaerobic respiration. I also misplaced the name of the neurotransmitter next to ATP. I will make the correction. I was in a hurry.

    So I tried to discuss what was happening with my PT today during the deep muscle massacre. He seemed to deny lactic acid build up as a cause for the pain. So I asked him what it was then and he didn't answer me. He just said there were a bunch of "bad" chemicals that needed to be released. So I asked him what the current thought was on that, and he said basically what I just told him. What??? So what are these "bad" chemicals that cause pain in the continuously spasmed muscle? Or is it irritated nerve endings? That's what it feels like to me. I'm guessing that it might have something to do with a neurotransmitter sending pain signals to the brain, but which one/s? This may be the reason that some antidepressants work on people with chronic pain. Too bad I can't take them.

    Fibromyalgia was mentioned in one of the places that I looked for references. A lot was said about that. It makes me wonder if these aren't dystonia patients as well, since "trigger points" seem to be the key reason for pain in the fibromyalgic patient. That would also make sense as to why a large percentage of scoliosis patients have fibromyalgia, at least the percentage of us that have painful scoliosis.

    I'm also wondering if the markers for heritable dystonias are included in among the 50+ (I think that is correct - Pooka1 will correct me if I'm wrong) markers used to predict curve progression in Scoliscore since the two seem to be related. They would have to sort them out, and I think that might be a hard thing to do, since in studies where DNA is looked at, they are particularly looking for common DNA bands that scoliotics have with each other when they run the gels.
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  13. #13
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    Quote Originally Posted by TAMZTOM View Post
    I can follow, great post, but discussion is "above my pay-grade".

    Pedantic tangential stuff: is should be anaerobic "metabolism", not "anaerobic respiration". What you are describing is the respiratory threshold which occurs when your metabolism switches to more anaerobic fuels (they're always used, even in aerobic activity, but the body reaches a lactate threshold then switches at the saturation point. You can develop and push the LT higher. We've found that the LT and the respiratory threshold, although different, coincide within seconds. The respiratory change can therefore be used as a proxy for the LT.
    It's a matter of terminology. Depends on who your mentor is and where you go to school. It's my understanding that during aerobic exercise that is not overdone, your body is able to keep the lactic acid flushed out via good blood flow to the muscles. It's when they get overworked that this stops happening and you get sore muscles from too much exercise. It normally resolves quickly. In my particular case it doesn't always resolve, depending on "where" it happens.
    I'm also sticking my head out on a limb here to say that the difference between a trigger point and dystonia is the severity, since a trigger point is a dystonic muscle. That's why the above post.
    Be happy!
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    Quote Originally Posted by rohrer01 View Post
    In my particular case it doesn't always resolve, depending on "where" it happens.
    Where exactly does it occur, Rohrer? (Apologies if you've already said where.) Is it overworked muscles as I've described on the other thread? Or more towards curve concavities, which would raise the concern with "functional tethering" given that you have ectopic CTs distorting the canal/cord and 'rubbing' the nerve endings in the concavities: cf., see page 27...http://books.google.co.uk/books?id=f...london&f=false
    I'm not equipped to diagnose (obviously) and not suggesting anything, just greatly interested because of Tamzin (sounds very self-serving, apologies again, but I know that you'd help anyone with this condition so the questions remain).
    Tom
    07/11: (10yrs) T40, L39, pelvic tilt, rotation T15 & L11
    11/11: Chiari 1 & syrinx, T35, L27, pelvis 0
    05/12: (11yrs) stopped brace, assessed T&L 25 - 30...>14lbs , >8 cm
    12/12: < 25 LC & TC, >14 cms, >20 lbs, neuro symptoms abated, but are there
    05/13: (12yrs) <25, >22cms height, puberty a year ago

    Avoid 'faith' in 'experts'. “In consequence of this error many persons pass for normal, and indeed for highly valuable members of society, who are incurably mad...”

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    Metabolism versus respiration

    I learned this most completely in the context of bacterial metabolism and respiration but I think the concepts (bacterial versus human) are the same.

    Respiration is essentially how electrons are dumped (to which molecules) from metabolizing (oxidizing) carbon sources (food). So respiration is a subset of metabolism which includes other things like anabolism (building molecules) and catabolism (breaking down molecules).

    Respiration (dumping electrons from oxidizing organic molecules) can be aerobic or anaerobic but aerobic respiration is FAR more efficient that anaerobic respiration.

    I think lactic acid production is essentially a fermentation (incomplete metabolism) of glucose where electrons are dumped to an organic molecule instead of eventually to carbon dioxide. I only really began to understood all this stuff within the context of bacterial metabolism in grad school and not in Bio 2 in undergrad. And I hope I am remembering this stuff correctly... I had to look up the precursor molecule to lactate - glucose (duh! I'm ashamed to admit).

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    Last edited by Pooka1; 04-19-2012 at 06:59 PM.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

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