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Thread: Scoliscore - Quo Vadimus?

  1. #1
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    Scoliscore - Quo Vadimus?

    Where are we going with this?

    Once we hit the Intermedicate Risk Score ... it is as if we don't have the test at all as there is no predicting for "certain" what will happen. Scoliscore is in field testing now ... and chapter one in a very large book to come. And furthermore - the low scores cannot predict what may happen in old age. Scoliscore is proving (to me) to present more questions than it initially seems to answer.

    Videos worth watching: http://www.spinecme.org/activity/942

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    Thank you Mamamax for these videos. Very interesting. I'm left with the feeling here that what this Axial Biotech research is still doing is basically writing off the adult patient. Yes, it is VERY important to know what the adolescent curve is going to do before skeletal maturity. But either I am not understanding the information, or these tests have no value in predicting what a curve will do AFTER skeletal maturity. I was diagnosed at 16 with a 39* curve and told that I would progress to surgery level curve 40* by my 40's, which in fact I progressed to that level before reaching 30 years of age. When I went to the Twin Cities Spine Center in Minneapolis, MN, where Dr. Oglvie worked at the time, the magical number had changed from 40* to 50* for surgical intervention (thus my post about 50*). Even though I was in sever pain and only 29 years old the doctor that I saw would not touch me (Dr. Joseph Perra). I am now 41 years old and 46*, not to mention developing a lower thoracic curve now 28*, which was negligible as a teen. How do these studies play into this? Are they telling us as parents that if we can get our kids to skeletal maturity that there will be no progression and then just dismiss them? There is WAY more to this story than is being addressed here. For me, they hovered over me like vultures just waiting to see 40* so they could operate (Phoenix Children's Hospital), then when I reached 18 years old, they told me I would need surgery someday, probably in my 40's, bye, bye.

    I realize that this testing is a very important tool for parents and doctors in making decisions on whether to brace an adolescent or do surgery on a smaller curve, knowing it will progress. But it does little to help that adolescent when they become adults, which we all do. Am I making any sense? I find it very frustrating, being that I have a 20 year old daughter that fell withing that 15 - 20* curve pattern and now refuses to even be evaluated because she was told her growth was complete and there was no chance of progression. The doctor went so far as to say that he didn't even consider her to be serious enough to be classified as scoliosis. This was not a specialist (he was a orthopedic surgeon in sports medicine) and I was sadly undereducated on treatments of scoliosis - and what kind of doctors to see and NOT to see. Now there is absolutely nothing that I can do to help her, even though she is starting to present with back pain.

    Interesting findings, but not very helpful for those of us that are aging. The estrogen related thing that they said made girls more likely to progress than boys intrigued me, too. I have progressed about 12* total for both curves. During this time I was going to a chiropractor for treatments, BUT I was also going to a fertility specialist and taking all kinds of fertility drugs that interfere with estrogen production. It makes me wonder if either or both had a correlation, or was I just genetically predisposed to progress?

    I know these are probably stupid questions, since the topic was about Adolescent Idiopathic Scoliosis. But, hey, adolescents turn into adults, so I don't think I'm too far off base.

    Thanks again Mamamax for sharing the videos!
    Last edited by rohrer01; 04-16-2010 at 05:50 PM.

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    Some great thoughts and questions rohrer01. I wonder myself what application there may be for adults (if any). Hope to finish watching the videos this evening. Hopefully others will weigh in on this also. I would like to know if there is a way for us to track the field trial results, or if we will have to wait years for those results. If it works as well as some say it will then yes it can be very important in making treatment decisions for our youngest. The error rate is supposedly 1% ... which is great, unless one is in that 1% .. and seems no way of predicting that. Did you see in video #1 the suggestion that scoliosis is so driven by heredity that the term IS should be changed to familial scoliosis. Interesting. I really enjoyed your comments and found them thought provoking - I do not think you are way off base.
    Last edited by mamamax; 04-16-2010 at 09:05 PM. Reason: typo

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    Really how could it not be called familial scoliosis. I did not know anyone in my family had scoliosis until I participated in this very research study. It got everyone talking about it and I have at least 4 other people in my family with scoliosis. My aunt, although never diagnosed, obviously has kyphoscoliosis. My mom said she did it to herself because she was tall and wanted to be shorter than the boys. What a hoot! I love my mom, but some of the things she says. LOL ..So I'm thinking there's got to be a relationship there, also. The rest of us have the side bending kind.

    There is another lady on here that actually had her family participate in the study as well. She has a daughter that meets the criteria for the "test" and they have done the test on her. She is just waiting for the results. I wish they would test boys, too. I worry a little bit about my grandson being that I have it and so does his mother. Look under the thread Axial Biotech Results are Here.... something along those lines. Very interesting indeed!

    Thanks again!

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    rohrer01 - Yeah, what gives with leaving out the boys? Just finished watching all the videos to the end, including the Question/Answer session.

    It was freely admitted that selection of the high end score (180) was arbitrary, and that an Intermediate score puts everything back to square one (we don't know what will happen). How many will end up with an Intermediate score, that is the question. If it turns out to be the majority of people, then we have gained precious little. I'm still not convinced this test is going to tell us any more than a good solid family history would.

    I like your mom :-)

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    Well, even if most of the kids tested get an intermediate score, it means a LOT for those that get a low end or high end score. The low enders don't get subjected to as much radiation, etc. and the high enders probably won't be put through the pain and stress of bracing. I'm afraid the middle scores, well, they will have to go with the current treatment options. But at least there is benefit for some of the kids out there. I would definitely have my kids tested if it had been available!

    I like my mom, too. She thinks she knows, but she is silly sometimes. She thinks she caused my scoliosis from making me carry my saxophone to school every day. In my senior year of high school they actually made me quit band (the doctors). I lost out on the chance of a lifetime! I was one of four nationally accepted alto saxophonists to be chosen for a European tour and march in the Rose Bowl! I was devastated to say the least. It's just the doctor's at that time didn't know if I had a tumor and I was in a lot of pain.

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    From the video

    At about the 2:00 minute mark Dr. Ogilvie says this,

    "Well, once you know that it is a genetic disease how do you go about finding those genes?"
    AIS is a genetic disease? Really? The "I" in AIS stands for Idiopathic which means of unknown cause. Put simply we don't know why some children have Scoliosis.

    However that doesn't mean we can't make an educated guess as to what the cause might be. In the simplest terms Scoliosis, like all disease is caused by 1 of 3 things.

    A) Heredity
    B) Environment (usually damage)
    C) A combination of A & B

    According to American Family Physician scoliosis hits 2% to 4% of children between the ages of 10 and 16.

    How many harmful, genetic disorders hit that many children? Let's check Wikipedia and find out. Wiki: List of Genetic Disorders.

    Click on any potentially fatal, childhood, genetic disorder and look for the prevalence. Hmmm.... not a single one hits 2% to 4% of children around the world like Scoliosis. In fact only a handful hit more than 1 child in 10,000. Many genetic disorders hit 1 child in millions.

    Is Dr. Ogilvie's hypothesis correct that Scoliosis is caused by heredity? As long as the "I" remains in AIS we don't know. As for me I doubt it will be the first so I don't like the odds.

    So what about B) Environment or C) Environment plus heredity? How many potentially fatal, childhood disorders or diseases are caused by either of those? Countless.

    According to wikipedia there are 350 to 500 million cases of Malaria every year which kill between 1 and 3 million people. The flu kills 250,000 to 500,000 people per year. Think of all the common diseases that you got as a child. They were all environmental.

    But what about diseases like Type 1 Diabetes? Type 1 runs in families so it's genetic, right? Nope. Mounting evidence points to a common virus as the cause. Genes only play a role in susceptability.

    What about a disease like Multiple Sclerosis? Even the name sounds genetic. Genes may play a role in susceptability but once again a common pathogen appears to be responsible.

    What about mental illness like Schizophrenia? Remember the flu that kills 250,000 to 500,000 people per year? Evidently it's also a trigger for Schizophrenia and Autism.

    The more you read the faster you'll realize that disease in young people is almost always caused by environmental damage. A disproportionate percentage of this is caused by pathogens. Germs and viruses are the undisputed heavyweight champions when it comes to taking down humans and they do so in a multitude of different ways.

    Could a germ or virus deform the spine? Yep. Polio is a well known cause of Scoliosis. According to the link that LindaRacine posted the other day Tuberculosis can also cause spinal deformity.

    HBO: Making The Crooked Straight

    Born in Long Island, New York and educated at John Hopkins-Dr. Rick Hodes has dedicated his life to helping heal the sick and poor of Ethiopia over the past 20 years. Many of his patients are stricken with tuberculosis of the spine, a disease that creates massive humps on the backs of its victims. Eventually they’re forced into permanent forward-bending posture, which in turn prevents their lungs from working properly, and if left untreated leads to death.
    No doubt doctors are aware of dozens of different infectious diseases that damage the spine. It is easily possible that a common pathogen can cause damage which for reasons we don't yet understand leads to AIS. It's how I'm betting and I believe the odds are in my favor.
    Last edited by Dingo; 04-17-2010 at 02:06 AM.

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    Quote Originally Posted by rohrer01 View Post
    I wish they would test boys, too.

    Rohrer, are you sure they don't test boys? We had someone sign up at SSO who told us her son has been tested.

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    rorher01 & Tonibunny - maybe the original "mapping" didn't include boys? I don't know now ....

    Dingo - Thanks for weighing in, was hoping you would. Would have liked to see you in that Question/Answer group! What if all the multi-factorial things wind up effecting the severity of the condition, but bottom line, a genetic defect is what allows that to happen?

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    It would be next to impossible to distinguish between the following two scenarios:

    1. faulty genes

    2. faulty genes plus environmental trigger if the environmental trigger is ubiquitous.

    The distribution patterns of AIS cases would be IDENTICAL between these two scenarios.

    The simplest explanation that best describes the situation now is that it is genetic as Oglivie states outright though of course if there is an environmental trigger and someone ever identifies it, then that is an avenue of research for AIS prevention hopefully.
    Last edited by Pooka1; 04-17-2010 at 06:24 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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    Genetic Disorders

    A genetic disorder is a disease that is caused by an abnormality in an individual's DNA. Abnormalities can range from a small mutation in a single gene to the addition or subtraction of an entire chromosome or set of chromosomes. To learn more about different genetic disorders, browse through the Genetic Disorder Library

    http://learn.genetics.utah.edu/conte...ers/whataregd/
    Dingo - Where is Dr. House when we need him? Anyway, ... we know environmental factors can alter DNA. So it would stand to reason that any small mutation could be further "altered" through environmental factors.

    I hear that smoking can alter DNA ... question: is the altered DNA corrected upon cessation? If so ... it is promising to know that alteration can be corrected.

    Wonder what all this is coming up with: http://learn.genetics.utah.edu/content/health/ngs/

    Anyone know what the Howard Hughes Medical Institute Precollege Science Education Initiative for Biomedical Research is doing (if anything) in the area of scoliosis research?
    Last edited by mamamax; 04-17-2010 at 10:56 AM.
    Idiopathic, from the Latin meaning: we're idiots 'cause we can't figure out what's causing it (TV Dr. House, MD)

    I'm not weird ... I'm simply - multifactorial

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    probably not a genetic defect

    mamamax

    Thanks for weighing in, was hoping you would. Would have liked to see you in that Question/Answer group! What if all the multi-factorial things wind up effecting the severity of the condition, but bottom line, a genetic defect is what allows that to happen?
    Most cases of Scoliosis occur sporadically. For that and many other reasons I believe that the majority of AIS cases are not rooted in a genetic defect. However it's possible that certain rare types of AIS are caused by genes. It's also possible that particular genes may make a child susceptible to environmental damage that triggers Scoliosis. As I've mentioned before Leprosy is caused by a bacterial infection but genes create increased susceptability to the germs that cause it (Gene that makes people vulnerable to leprosy discovered).

    BTW none of this means that the Scoliscore isn't a useful test. Scoliscore isn't designed to find the genes that trigger Scoliosis. It's designed to find the genes that allow Scoliosis to inflict serious damage should it occur. Think of it this way, when Haiti was hit by a 7.0 earthquake over 200,000 people died. When Chili was hit by an 8.8 earthquake only 500 people died. The difference in casualties was largely a result of building standards. If these earthquakes hadn't occured nobody would have died in either city. For the same reason if a child doesn't have Scoliosis his/her Scoliscore doesn't matter.

    BTW if I had the good fortune to end up in a Q&A session with Dr. Ogilvie I could shut him down inside of a minute. If he came under direct, simple questioning from me or anyone else he would backpeddle from his claim that Scoliosis was caused by heredity.
    Last edited by Dingo; 04-17-2010 at 11:02 AM.

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    I was contacted by the Director of Comms at Axial Biotech a few weeks ago, and she said I could contact her at any time with questions about Scoliscore. I'll ask her if she could possibly come here so you can have a discussion Dingo

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    Quote Originally Posted by Dingo View Post
    mamamax
    Most cases of Scoliosis occur sporadically. For that and many other reasons I believe it's highly unlikely that the majority of AIS cases are rooted in a genetic defect. However it's possible that certain rare types of AIS are caused by genes. It's also possible that particular genes may make a child susceptible to environmental damage that triggers Scoliosis. As I've mentioned before Leprosy is caused by a bacterial infection but genes create increased susceptability to the germs that cause it (Gene that makes people vulnerable to leprosy discovered).
    I agree that it sometimes appears that certain cases are "sporadic" but I have no idea whether or not most cases are ... didn't one of the docs in the video indicate that sometimes one may have to go back nine generations to find a familiar link?

    BTW none of this means that the Scoliscore isn't a useful test. Scoliscore isn't designed to find the genes that trigger Scoliosis. It's designed to find the genes that allow Scoliosis to inflict serious damage should it occur. Think of it this way, when Haiti was hit by a 7.0 earthquake over 200,000 people died. When Chili was hit by an 8.8 earthquake only 500 people died. The difference in casualties was largely a result of building standards. If these earthquakes hadn't occured nobody would have died in either city. For the same reason if a child doesn't have Scoliosis his/her Scoliscore doesn't matter.
    Yes, the test is not a diagnostic tool - but rather, a tool to help doctors and patients assess treatment options. If one falls into the low end of the score, we presume no treatment will be needed (barring any unforeseen environmental factors?). The true test of that will involve several years of gathering data and tracking patients.

    BTW if I had the good fortune to end up in a Q&A session with Dr. Ogilvie I could shut him down inside of a minute. If he came under direct, simple questioning from me or anyone else he would backpeddle from his claim that Scoliosis was caused by heredity.
    Well, there was some sputtering going on when offered a question about how bracing may effect any one of the categories ... if I remember correctly one doc said - we simply do not know & Ogilvie said something like - we are not permitted to comment on that at this time. So I think you would have found similar answers to your questions but certainly, you would have sent them home with something to think about :-)
    Idiopathic, from the Latin meaning: we're idiots 'cause we can't figure out what's causing it (TV Dr. House, MD)

    I'm not weird ... I'm simply - multifactorial

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    In re Oglivie's response that he wasn't permitted to answer, what has been characterized as "sputtering" was the careful qualification of his remarks and intense desire not to go beyond the data. This is a good skill to have and would greatly benefit some folks in this sandbox.

    He was asked if a score of greater or equal to 195 was "useful" in that we can just assume they will all get to surgical territory just as they claim a very low score is useful. The reason he said he was not permitted to say that is they don't have enough data points at the high end to be as sure as their conclusions at that lower end and he explained this exact point earlier in the talk.

    There is no subterfuge or hedging or anything like that. Axial Biotech is being careful not to let the researchers speculate beyond the data which would undermine the credibility of the results.
    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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