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Thread: Newbie question...nature of the pain caused by scoliosis

  1. #16
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    Quote Originally Posted by LindaRacine View Post
    Is it not true that if there are people with large scoliosis curves who do not have pain (and I can attest to this being true), that it can be said that scoliosis does not cause pain? Do people think that those who don't have pain are lying?
    This question rides a knife edge of sematics in my opinion.

    I think the issue is that bone simply being out of alignment does not necessarily cause pain. The proof is the people with curves large and small with no pain. It is only when the misalignment causes disc problems or stenosis or something ELSE that triggers pain. Because these same disc problems and stenosis occur in perfectly straight spines, you can't even say the scoliosis definitely caused those issues. So then it comes down to a game of numbers and percentages in prevalences and incidences of these issues in people with and without scoliosis to decide if the curve contributes over and above to painful conditions that the general public experiences with straight spines. See next question.

    Somewhere between 80-85% of adults have back pain at least occasionally. The percentage is about the same in adults with scoliosis, regardless of curve magnitude. I actually think people with scoliosis are generally much more stoic about their pain than the general public. Radiographically, adults with scoliosis typically have at least 4 or 5 issues that would be valid reasons to justify surgery. We see patients without scoliosis every day, with a single level that's barely abnormal, who claim that they have 10 out of 10 pain.
    The stat I have seen is that at least 85% of adults will experience back pain in their lifetime that is bad enough to drive them to see a doctor. I am in that category... I ruptured a disc twice, the first time when I was about 30 yo and I don't have scoliosis. I was debilitated until the disc healed. The second time it happened I was again debilitated but kept riding for another 1.5 years until I realized it would not heal until I stepped off which I did for 3 months. It healed. Stepping off my horse and putting him in training with someone else for 3 months may not sound serious in the scheme of things but to put it in perspective, I have never been off my horse for longer than I have been on a 10 day vacation previously. And I have never had to step off for a back problem. (The first time I herniated the disc I had been out of sport for about a year but feel the foundation for the injury happened while riding before I stopped.)

    Anyway, unless the percentage of people with scoliosis and back pain is measurably greater than ~85%, we cannot know the curve alone is what has caused the disc pain or stenosis given the high amount of these things in the general population.

    Now if someone told me ~100% of people with scoliosis will get back pain eventually if they are not fused straighter, I would believe it and agree it was a higher percentage than the general population. If that is the case then we can say the curve over time will trigger disc pain or stenosis OVER AND ABOVE that seen in the general population. Actually, Dr. Hey seems to be saying something like this in arguing for correcting curves... avoiding future damage from simply having a curve over the years. This, by the way, is rarely mentioned to parents and children where the ENTIRE focus is on being below a surgical angular threshold at skeletal maturity. Well if some/most/all of these kids who never make it to frank surgical range (>50*) at the point of skeletal maturity still have pain triggered by the misalignment over time then a miss is as good as a mile and they may not be avoiding surgery after all despite "successful" bracing.

    So I think both Burdle and Linda are simultaneously correct within the limits of sematics and the written word.
    Last edited by Pooka1; 04-03-2016 at 09:58 AM.
    Sharon, mother of identical twin girls with scoliosis

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  2. #17
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    Quote Originally Posted by slipsliding View Post

    This scoliosis pain has puzzled me because of the nature of the pain. I'm fine sitting, I'm fine lying down, but if I decide to get up and move around, I'm good for only about 10 minutes before the pain is really gripping, almost immobilizing, causing me to retreat to the bed, the chair, etc. where is seems to quickly resolve, especially if I slap a heat pack on it. Why is that?
    Slip, I don’t know if there is an answer for this question or if you can even blame scoliosis? MS changes everything.....Neuro diseases are far from being simple.

    You say that the heat pack resolves your pain quickly.....I used hot soaks with 106 degree F water for pain, before and after surgery, it works quite well on bone and nerve pain. My scoliosis and surgical recovery was all about staying “as comfortable as I could, as long as I could”. If your pain comes after 10 minutes of standing, can you reduce to 5 minutes and see what the effect is? Do you actually notice a triggering of pain immediately upon standing? What is the time threshold, and is it linear? In other words, can you get up and walk around for 5 minutes, and be ok as far as pain is concerned?

    I cant comment on it being a “mechanical”.....Its funny how pain is triggered and how it lingers. You can do physical spine damage and the resulting pain can take many days to take a foothold, (I have had this happen) or if a nerve is inflamed, can take a really long time for the pain to turn off....or switch off like a light switch. (I have had this happen) Or you can hit your hand with a hammer for immediate pain. (I have had this happen) I wonder what Richard Pryor would think? He had MS. Of course our situations do require comedic effort to keep our sanity intact......Do try to keep smiling Ok?

    Jasero, welcome to the forum....

    We appreciate your posts....

    You guys, hang in there

    Ed
    49 yr old male, now 58, the new 53...
    Pre surgery curves C12,T70,L70
    ALIF/PLIF T2-Pelvis 01/29/08, 01/31/08 7" pelvic anchors BMP
    Dr Brett Menmuir St Marys Hospital Reno,Nevada

    Bending and twisting pics after full fusion
    http://www.scoliosis.org/forum/showt...on.&highlight=

    My x-rays
    http://www.scoliosis.org/forum/attac...2&d=1228779214

    http://www.scoliosis.org/forum/attac...3&d=1228779258

  3. #18
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    Quote Originally Posted by rohrer01 View Post
    For those of you who think that Linda is saying that scoliosis in and of itself doesn't cause pain, she's right. Not EVERYONE with scoliosis has pain. But those people may not have other problems that are aggravated by their scoliosis. I think some of the bone pain I have is from the vertebrae being pulled on by the strong muscle spasms caused by my MD.

    Remember that every case is unique. Not everyone has the same cause for their scoliosis. I thought mine was AIS until I was diagnosed with some unknown muscle disease and cervical dystonia. That explains a LOT. It's probably the cause of my scoliosis, which would explain the pain.

    Slipsliding, at your age you probably have a combination of arthritic degeneration and progression. Weak muscles can certainly cause pain if they can't hold your ribs like they should. Overstretching any muscle hurts!

    Rohrer
    Hi Rohrer,

    I know you mentioned MD as a culprit in muscle spasms. I wanted to pass on that I did do a little more research into what the Scoliosis information sites
    called Neuromuscular Scoliosis. You might find the articles about this interesting, seeing you have the MD connection. Their explanation was that neuromuscular disease, like MD, can lead to weakening of the muscles, which in turn contributes to the scoliosis. Once again, I feel like an extreme
    layman when reading the articles, so I may be misinterpreting what's being communicated, but I did find it interesting.

  4. #19
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    Slipsliding,

    Can you share the link to the article that you read? I actually have a plethora of symptoms. I have a lot of myotonic and dystonic muscles, both of which cause muscle spasms, but in different ways. I don't have a typical muscular "dystrophy". I've had one muscle biopsy that showed no actual dystrophy. I have just about all of the symptoms of one or the other of the family of Myotonic Muscular Dystrophy. My neurologist was 80% convinced that I had Myotonic Muscular Dystrophy. He did an EMG that didn't show any typical "dive-bomber" sounds that come with MMD and then referred me to a geneticist. She did her own physical exam and came up with the same primary suspicion. But she also tested me for the Charcot Marie-Tooth (CMT) subsets of diseases as kind of a shot in the dark. My tests revealed that I am a carrier for a recessive form of one of the less dangerous forms of CMT and a mutation on a dominant form of the disease which is one of, if not the most severe and life-threatening form of CMT. The odd thing is, they can't "diagnose" me with (CMT) because this mutation that they found is not known to cause disease in "other species".

    There is no known information about this mutation in humans and for sure no known information about this mutation in combination with the other known mutation that makes me a carrier for the lesser form of CMT. So there needs to be some research into these mutations together. I am planning on going back to school and making this my thesis for my Master's degree in Cell and Molecular Biology. But I'm not sure I can do it. I know how rigorous college is and I am rapidly losing my ability to walk and am also prone to falls that always send me backward. I got a pretty nasty concussion in October 2014 that I'm still recovering from the cognitive deficits it caused. I've been hurt pretty badly from some of these falls. Just a little under eight months ago I fell and broke a rib. My walker isn't protective against these falls. When my body decides it wants to fall, I can be in any position. I really need a scooter with a head rest in order to be fully protected. There is a LOT of walking involved in going back to school so the scooter is in order! I will say that I've never fallen in a complete sitting position. The broken rib incident I was sitting on my bike that I can no longer ride and just flipped off of it for no apparent reason.

    So here's the scoop on myotonic muscles. They make dive-bomber noises on EMG, which my neurologist couldn't find. My physiatrist has found one or two in certain muscles using a needle EMG under my shoulder blades that make the noise. However, my genetic tests were negative for both known types of MMD. Myotonia cause a muscle that is being used to contract more than needed and it takes a loooong time for the muscle to release. It's like when I would play on the monkey bars as a kid and when I got down it took awhile before I could straighten my fingers. My sister (also affected) and I thought it was a pretty cool thing when we were little. It was a "trick" we could do that no one else could do.

    With dystonic muscles, the muscles spasm and contract uninvited. By that, I mean you don't have to actively be using it unlike the muscles that are myotonic. Also, with dystonia, the muscles can twitch and spasm, so many cervical dystonia patients can't hold their heads still. I, fortunately, had only a small tic that my physiatrist never saw and is gone now because of the Botox treatments.

    Another thing that happens to me is that I get random stabbing pains that are like a 9 on the pain scale. But they only last about a second. But the stabbing jolts can go on for up to an hour at a time. I can't take pain pills for them because I don't know how long the episode will last. It's like a stab that immediately goes away after about a second, then a second or two later I'm jabbed again. The most common places for these are on the tops of my feet (usually the right foot) and my legs. They have happened in my hands, arms, and let's say for politeness unmentionable places. I don't know if it's related to the dystonia or not because I get muscle spasms (Charlie horses) and/or uncontrollable twitching in these places as well.

    But, I also have marked weakness of my limbs. I don't know about my hands because no one's told me. I do the grip test and am never told the results, although I can feel hand weakness when I try to hold on to stuff, like grocery sacks (I've dropped a few). My leg weakness and arm weakness are almost embarrassing because I can't fight the resistance at all. It used to be just my left leg, but is now in both legs.

    It's my opinion that the cervical dystonia started at a very young age and is the main contributor of my scoliosis. My primary curve is so high in the thoracic area that it involves my neck. Check out my thread I directed you to earlier in this discussion if you want to see my x-rays and MRIs. My scoliosis is and always has been painful. I assumed when I was diagnosed with scoliosis that everyone else's hurt, too. Most of the doctors I saw as a young person told me that scoliosis doesn't hurt. It angered and scared me at the time because one doctor told me that my pain was, and I quote, "arthritic in nature". He never came out and said I had arthritis, but at 16 that's what it made me think. They gave me some kind of NSAID and sent me on my way until the next three months.

    So, I'm sure that this more than answered your inquiry about weak muscles vs. strong muscles contributing to my scoliosis.

    Have a good day and don't forget to post a link to that article if you can.
    Rohrer01
    Last edited by rohrer01; 04-03-2016 at 03:39 AM. Reason: typos
    Be happy!
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  5. #20
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    Quote Originally Posted by titaniumed View Post
    Slip, I don’t know if there is an answer for this question or if you can even blame scoliosis? MS changes everything.....Neuro diseases are far from being simple.

    You say that the heat pack resolves your pain quickly.....I used hot soaks with 106 degree F water for pain, before and after surgery, it works quite well on bone and nerve pain. My scoliosis and surgical recovery was all about staying “as comfortable as I could, as long as I could”. If your pain comes after 10 minutes of standing, can you reduce to 5 minutes and see what the effect is? Do you actually notice a triggering of pain immediately upon standing? What is the time threshold, and is it linear? In other words, can you get up and walk around for 5 minutes, and be ok as far as pain is concerned?

    I cant comment on it being a “mechanical”.....Its funny how pain is triggered and how it lingers. You can do physical spine damage and the resulting pain can take many days to take a foothold, (I have had this happen) or if a nerve is inflamed, can take a really long time for the pain to turn off....or switch off like a light switch. (I have had this happen) Or you can hit your hand with a hammer for immediate pain. (I have had this happen) I wonder what Richard Pryor would think? He had MS. Of course our situations do require comedic effort to keep our sanity intact......Do try to keep smiling Ok?


    Ed
    Hi Ed,

    Thanks for the insight. Yep, MS is such a strange disease and it's hard to assume or predict anything that happens. There's a study online called More than Meets the Eye and they actually did MRIs of an MS patient every 2 weeks for a year, then they time lapsed the MRIs. It's amazing to see all that was going on
    in the patients brain, and yet, he reported no symptoms or relapses. So to predict anything is absurd. (here's the link to the article...not sure i links are allowed on this site: http://www.msdiscovery.org/news/news...more-meets-eye )

    I will say this about the nature of the pain. I usually use a cane when I walk. I use it for stability, for balance, to give me more support because of my weak leg and to enhance my proprioception. And I use it in a certain way. I hold it in my right hand and since my left leg is the weak one, I put the cane down at the same time I'm beginning to put weight on the left leg. Well, this pain that does come within minutes of getting up and walking (the 10 minute time period is the time I have before I have to give up and get myself back in a "down" position) can be alleviated somewhat if I change my cane dynamics.

    I still keep my cane in my right hand but I tuck my elbow, keep the cane close to my body, and use it more as a device to force my right shoulder up and in a different position than it usually is (my body leans and my right shoulder is noticeably dropped. By forcing that right shoulder back into a more normal position, I can stave off the pain (which is on the left side.). It's an awkward way to walk, and my gait is shortened, but since it usually means diminished pain, I do it. That's why I have hope for that Aspen brace the PT is proposing. The brace appears to keep your torso straight and it will be interesting to see if it changes the shoulder position . So I'm anxious to see i it'll work.

    As far as keeping our sanity...I find humor is a huge relief. And "keep on smiling" in the MS community (or in any disease that causes demyelination) is spelled "keep smyelin."

  6. #21
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    Quote Originally Posted by rohrer01 View Post
    Slipsliding,

    Can you share the link to the article that you read?
    Rohrer01
    Hi Rorher,

    I found quite a few links to articles when I googled Neuromuscular Scoliosis. Here's one that mentioned MD.

    http://emedicine.medscape.com/articl...97-overview#a7

  7. #22
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    Quote Originally Posted by LindaRacine View Post
    How about saying "scoliosis can cause pain"? I think that's absolutely true.

    --Linda
    That's what you should have said! It is simply not logical to conclude that scoliosis does not cause pain just because you have some people with scoliosis who do not experience pain . You can only conclude the opposite . My post was nothing about discussing if people are in pain from muscles or discs which of course a lot are .

    We do not know enough about pain and noiceptors to know why some experience enough pain for it to be a problem and others do not

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