Vestibular Dysfunction as a causal factor in Scoliosis
*** A layman's theory*** :)
So, here's my theory: a vestibular dysfunction and sensory integration problems is at the root of scoliosis. Maybe not "THE CAUSE" but a factor to be considered. I should stop before I get much further and say:
I AM NOT A DOCTOR. I AM NOT A RESEARCHER. I DO NOT HAVE AN MD, A PHD, OR ANY OTHER FANCY CONFIGURATION OF INITIALS TO PUT BEHIND MY NAME. I PERSONALLY HAVE NO SCIENTIFIC BASIS FOR MY THEORY, BUT HAVE FOUND PLENTY OF STUDIES THAT MAKE SENSE WITH THIS THEORY BY PEOPLE WHO DO HAVE FANCY INITIALS.
I AM A MOTHER ~ WHO ALSO HAPPENS TO BE A PERSON WHO HAS TO UNDERSTAND THINGS COMPLETELY IN ORDER TO ACCEPT THEM. AND TO BE FAIR... THE BRAIN IS A VERY COMPLICATED THING TO HAVE TO UNDERSTAND! :) I WILL DO MY BEST TO EXPLAIN MY THEORY , HOW MY TRAIN OF THOUGHT EVOLVED, AND LIST ARTICLES FOR FURTHER READING.
IF YOU HAVE CRITICAL COMMENTS, PLEASE KEEP THEM RESPECTFUL :). I ENJOY CRITICAL EVALUATION AS IT MAKES ME A SMARTER PERSON WITH MORE PERSPECTIVE, BUT MY SKIN IS REALLY THIN!
HERE GOES...
And here's where it all stars... About a month ago the topic of trampoline use was brought up on a parent forum. It seemed most doctors were discouraging the use of trampolines for kids with scoliosis. A small mention was also made to get a second opinion about gymnastics classes. Obviously, my first reaction was... WHAT? But I didn't want to jump with a reaction that could be some sort of cognitive dissonance justifying not only my chosen career but the choices I've made for Makenna. This clearly hit close to home for me. My instinct was that the benefits far outweighed the possible risks associated if both are used appropriately. So, of course, I had to do some digging and see what research I could find to support both sides of the argument. And the most amazing series of discoveries began to unfold. And I have no idea if the theory holds water or if it's mere quackery, but I am going to continue to explore it. I don't pretend to be the first person to have this thought; in the course of my research it has become evident that this theory has been around for quite some time. It's just something, that I hadn't really thougth about before. It's intriguing and it seems to connect the dots.
I AM NOT A DOCTOR. I AM NOT A RESEARCHER. I DO NOT HAVE AN MD, A PHD, OR ANY OTHER FANCY CONFIGURATION OF INITIALS TO PUT BEHIND MY NAME. I PERSONALLY HAVE NO SCIENTIFIC BASIS FOR MY THEORY, BUT HAVE FOUND PLENTY OF STUDIES THAT MAKE SENSE WITH THIS THEORY BY PEOPLE WHO DO HAVE FANCY INITIALS.
I AM A MOTHER ~ WHO ALSO HAPPENS TO BE A PERSON WHO HAS TO UNDERSTAND THINGS COMPLETELY IN ORDER TO ACCEPT THEM. AND TO BE FAIR... THE BRAIN IS A VERY COMPLICATED THING TO HAVE TO UNDERSTAND! :) I WILL DO MY BEST TO EXPLAIN MY THEORY , HOW MY TRAIN OF THOUGHT EVOLVED, AND LIST ARTICLES FOR FURTHER READING.
IF YOU HAVE CRITICAL COMMENTS, PLEASE KEEP THEM RESPECTFUL :). I ENJOY CRITICAL EVALUATION AS IT MAKES ME A SMARTER PERSON WITH MORE PERSPECTIVE, BUT MY SKIN IS REALLY THIN!
HERE GOES...
And here's where it all stars... About a month ago the topic of trampoline use was brought up on a parent forum. It seemed most doctors were discouraging the use of trampolines for kids with scoliosis. A small mention was also made to get a second opinion about gymnastics classes. Obviously, my first reaction was... WHAT? But I didn't want to jump with a reaction that could be some sort of cognitive dissonance justifying not only my chosen career but the choices I've made for Makenna. This clearly hit close to home for me. My instinct was that the benefits far outweighed the possible risks associated if both are used appropriately. So, of course, I had to do some digging and see what research I could find to support both sides of the argument. And the most amazing series of discoveries began to unfold. And I have no idea if the theory holds water or if it's mere quackery, but I am going to continue to explore it. I don't pretend to be the first person to have this thought; in the course of my research it has become evident that this theory has been around for quite some time. It's just something, that I hadn't really thougth about before. It's intriguing and it seems to connect the dots.
Some Helpful Hints for Internet Research:
1. You can find anything you want on the internet:)
2. You should always seek the information you wish to find as well as anything that would prove you wrong.
3. You should phrase your search in the most professional language as possible. Informal queries will return informal websites. More formal queries will return results from prominent organizations and scholarly articles.
2. You should always seek the information you wish to find as well as anything that would prove you wrong.
3. You should phrase your search in the most professional language as possible. Informal queries will return informal websites. More formal queries will return results from prominent organizations and scholarly articles.
So I begin with the general assumption. Kids with scoliosis shouldn't use a trampoline. A google search returns plenty of documents verifying this fact. It also includes other activities that include running, jumping, marching, hopping, horseback riding, etc. I assume other things active kids do would be included as well: jump rope, hopscotch, jumping off the couch or out of the car.. What I can't find is a paremeter for duration or intensity of activity. I have to assume that a simple ride on a pony at the zoo would be fine, but trotting a horse might not be. This differentiation isn't noted anywhere. Just vague generalizations. Should Makenna really not jump off of anything? That impact certainly should be jarring to her back, and I wouldn't suggest she do it for an hour straight... but would a jump here and there cause great damage? Or are there other things she learns from the jump that might be counteractively beneficial? That is my thought with trampoline. But in the process of researching trampolines... I stumble upon countless research documents about proprioception and Adolescent Idiopathic Scoliosis. And I am intrigued.
Many parents note thier child with scoliosis has poor balance and lacks coordination. Who wouldn't, right? I mean if your back is all crooked ~ things are kind of going to be "out of whack". But what if the chicken came before the egg?
What if the lack of balance and an 'unstable' vestibular system set the spine to grow crooked?
And so I type in proprioception and scoliosis. I follow all the links and read the research. This one by far is my favorite and summarizes the research in perspective. Why has all of this focused on Adolscent Scoliosis? IIt would make more sense to me that an infant or toddler wouldn't even have a fully developed vestibular system and proprioception would naturally be unstable... That before children stand up and walk, they can't fully integrate all the signals they are being sent about balance, stability and equilibrium? And that most kids are diagnosed with infantile scoliosis before they stand - before they walk; sometimes before they crawl. And it also makes sense to me that a great deal would self resolve. As the child develops more and hits milestones and is able to integrate the signals being sent by various pieces of the vestibular system, everything kind of 'sorts itself out'. But assuming that one can just sit back and wait to see what happens is dangerous. There is a beautiful opportunity to help create stability and balance within the system before thins go awry. So I wonder if anyone is doing any of these similar studies on infants and toddlers? I still haven't found the answer to that question. Don't worry, I have all the e-mail addresses in hand to find the answers:)
As much as it seems common sense would lead one to this conclusion, I feel I need to reiterate it here: Vestibular therapy and motor coordinated activities cannot substitute for medical treatment. Once a curve has hit twenty+ degrees, management, correction and treatment require the use of correctional devices ~ either by serial casting or bracing.
And perhaps the success of serial casting is not only in the gentle correction of the curve, but also in the constant correction offered for reference for the vestibular system to "re-calibrate". The most success has been found if you can harness the growth and 'teach' the spine to grow straight. But what if the spine isn't the only thing learning during the process?
So here are just a few more things that further cement my thought that the vestibular system and the importance of internal balance needs to be addressed in scoliosis:
Makenna has a rare genetic disorder. The only way the scoliosis associated with HGPPS has ever been described by researchers is 'relentlessly progressive'. So, why is it that Makenna is straight? How has she achieved that and how is she maintaining that? Certainly, early intervention and treatment are at the root of her success. But how much has her exposure to balance activities and coordination training played a part in it as well? I'm not sure we'll ever know.
I have always felt that Makenna's case should be able to help researchers understand scoliosis in general. Despite the complexity of HGPPS, the only two complications are lack of horizontal eye movements and scoliosis. Her entire body is wired differently than the rest of us, but these are the only two problems she has. But yet there is no conclusive reason for the scoliosis. This, of course, leads me to doubt my theory... because it seems so elementary. But it also makes a lot of sense. Makenna can't track or trace the objects she sees. Try this: look at any object in the room you are siting in. Take in every detail of it. From top to bottom and side to side. Cover every inch. And notice what your eyes do. Can you feel them move? Our eyes constantly scan items to give us a frame of reference. Not only about the object,but about our relation to it. Is it taller than we are, is it bigger, how far away is it? That rapid eye movement and assessment communicates with the rest of your vestibular system to give information about your postural alignment and spatial awareness. It has to have something to do with it....
And as a final connection... there has long since been a reported correlation between the increase in infantile scoliosis in the United States and the "Back to Sleep" Campaign of the 1990's. A study was recently published linking an increase in torticollis and plagiocephally since this campiagn... when I read of the study, just out of curiosity, I typed into google vestibular development and prone lying (face down). The second full listing after the scholarly articles is "Sensory Integration and the Child". Very, very interesting indeed.
So, that's the theory :) And it's still pretty rough. At least, I can't explain it very well yet. Each time I try, I get better at it, so I will most likely update this page as it all makes more sense to me. I have reached out to some researcher in this area to see what their thought are and if it all makes any sense at all in relation to infantile scoliosis and Makenna case specifically.
Many, many listings on fixscoliosis.com were also very interesting and useful to me. These are the forward thinking doctors who have created scoliscore - a genetic test available for adolescent scoliosis. They have also created E-SMART - Early Stage Management Active Rehabilitation Treatment for scolisis. This is an anit - WATCH and WAIT program :) They believe that an active approach is the best management - even for a small curve.
Many parents note thier child with scoliosis has poor balance and lacks coordination. Who wouldn't, right? I mean if your back is all crooked ~ things are kind of going to be "out of whack". But what if the chicken came before the egg?
What if the lack of balance and an 'unstable' vestibular system set the spine to grow crooked?
And so I type in proprioception and scoliosis. I follow all the links and read the research. This one by far is my favorite and summarizes the research in perspective. Why has all of this focused on Adolscent Scoliosis? IIt would make more sense to me that an infant or toddler wouldn't even have a fully developed vestibular system and proprioception would naturally be unstable... That before children stand up and walk, they can't fully integrate all the signals they are being sent about balance, stability and equilibrium? And that most kids are diagnosed with infantile scoliosis before they stand - before they walk; sometimes before they crawl. And it also makes sense to me that a great deal would self resolve. As the child develops more and hits milestones and is able to integrate the signals being sent by various pieces of the vestibular system, everything kind of 'sorts itself out'. But assuming that one can just sit back and wait to see what happens is dangerous. There is a beautiful opportunity to help create stability and balance within the system before thins go awry. So I wonder if anyone is doing any of these similar studies on infants and toddlers? I still haven't found the answer to that question. Don't worry, I have all the e-mail addresses in hand to find the answers:)
As much as it seems common sense would lead one to this conclusion, I feel I need to reiterate it here: Vestibular therapy and motor coordinated activities cannot substitute for medical treatment. Once a curve has hit twenty+ degrees, management, correction and treatment require the use of correctional devices ~ either by serial casting or bracing.
And perhaps the success of serial casting is not only in the gentle correction of the curve, but also in the constant correction offered for reference for the vestibular system to "re-calibrate". The most success has been found if you can harness the growth and 'teach' the spine to grow straight. But what if the spine isn't the only thing learning during the process?
So here are just a few more things that further cement my thought that the vestibular system and the importance of internal balance needs to be addressed in scoliosis:
Makenna has a rare genetic disorder. The only way the scoliosis associated with HGPPS has ever been described by researchers is 'relentlessly progressive'. So, why is it that Makenna is straight? How has she achieved that and how is she maintaining that? Certainly, early intervention and treatment are at the root of her success. But how much has her exposure to balance activities and coordination training played a part in it as well? I'm not sure we'll ever know.
I have always felt that Makenna's case should be able to help researchers understand scoliosis in general. Despite the complexity of HGPPS, the only two complications are lack of horizontal eye movements and scoliosis. Her entire body is wired differently than the rest of us, but these are the only two problems she has. But yet there is no conclusive reason for the scoliosis. This, of course, leads me to doubt my theory... because it seems so elementary. But it also makes a lot of sense. Makenna can't track or trace the objects she sees. Try this: look at any object in the room you are siting in. Take in every detail of it. From top to bottom and side to side. Cover every inch. And notice what your eyes do. Can you feel them move? Our eyes constantly scan items to give us a frame of reference. Not only about the object,but about our relation to it. Is it taller than we are, is it bigger, how far away is it? That rapid eye movement and assessment communicates with the rest of your vestibular system to give information about your postural alignment and spatial awareness. It has to have something to do with it....
And as a final connection... there has long since been a reported correlation between the increase in infantile scoliosis in the United States and the "Back to Sleep" Campaign of the 1990's. A study was recently published linking an increase in torticollis and plagiocephally since this campiagn... when I read of the study, just out of curiosity, I typed into google vestibular development and prone lying (face down). The second full listing after the scholarly articles is "Sensory Integration and the Child". Very, very interesting indeed.
So, that's the theory :) And it's still pretty rough. At least, I can't explain it very well yet. Each time I try, I get better at it, so I will most likely update this page as it all makes more sense to me. I have reached out to some researcher in this area to see what their thought are and if it all makes any sense at all in relation to infantile scoliosis and Makenna case specifically.
Many, many listings on fixscoliosis.com were also very interesting and useful to me. These are the forward thinking doctors who have created scoliscore - a genetic test available for adolescent scoliosis. They have also created E-SMART - Early Stage Management Active Rehabilitation Treatment for scolisis. This is an anit - WATCH and WAIT program :) They believe that an active approach is the best management - even for a small curve.