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Thread: The Axial Biotech Test is Here

  1. #31
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    Quote Originally Posted by Dingo View Post
    Reyes syndrome works something like that. If you give the wrong kid Aspirin he is in big trouble.
    Dingo, the use of aspirin - and risk of Reyes - has been well documented since the *late 70's*.

    Don't tout it like it's something new.
    Fusion is NOT the end of the world.
    AIDS Walk Houston 2008 5K @ 33 days post op!


    41, dx'd JIS & Boston braced @ 10
    Pre-op ±53°, Post-op < 20°
    Fused 2/5/08, T4-L1 ... Darrell S. Hanson, Houston


    VIEW MY X-RAYS
    EMAIL ME

  2. #32
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    Quote Originally Posted by txmarinemom View Post
    Don't tout it like it's something new.
    ummm, I missed the part where he suggested/ implied/ hinted/ alluded to (our understanding of) the relationship between Reyes and Aspirin being something new.
    Last edited by concerned dad; 05-07-2009 at 12:11 PM. Reason: added "(our understanding of)" for clarity

  3. #33
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    I found an interesting paper this afternoon while looking for something else (I was trying to find out about the "International Scoliosis Society" as mentioned by DT in another thread – no luck)

    The paper I did find was:

    A History of Bracing for Idiopathic Scoliosis in North America
    Reginald S. Fayssoux MD, Robert H. Cho MD, Martin J. Herman MD
    Clin Orthop Relat Res
    Published online May 22, 2009


    (Dingo will appreciate the timeliness of the information.)

    They went throught he history of bracing, starting with Hippocrates.

    Their reasoning for the historical perspective is:
    ‘‘If you would understand anything, observe its beginning and its development.’’—Aristotle

    They gave a discussion of all the braces we've talked about here from the Milwaukee to the SpineCor.

    In the discussion section they talked about one of my favorite topics, assessing skeletal maturity by ways other than Risser. They then go on to discuss the genetic testing (hence, a posting in this thread);

    Advances in genetic research have been the most exciting developments to date. James W. Ogilvie and colleagues have identified genetic markers, two major genetic loci and 12 minor loci, related to the development of scoliosis [41]. They found 95% of patients with idiopathic curves greater than 40* had these genetic markers. Using a simple genetic test, it may be possible to identify individuals at highest risk of developing severe scoliosis at the time of initial diagnosis. Armed with this information, followup care and treatment considerations can be individualized. Early bracing or minimally invasive surgical procedures may be recommended for those with a positive screen for severe scoliosis, whereas those at low risk based on DNA analysis may be spared unnecessary treatment.

    Then they discuss internal bracing and fusionless procedures which I take to be VBS techniques.

    All in all, an interesting paper.

    Here is the link to the Abstract
    Last edited by concerned dad; 05-26-2009 at 03:59 PM. Reason: to include abstract link

  4. #34
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    Hi CD,

    Thanks for the link to the abstract--it looks like a very interesting article, and I just e-mailed my friendly medical librarian to ask if she can get me the complete article. If I can maybe I can figure out how to place a hot link to it here (no idea how--haha).

    Take care,
    Gayle, age 47
    Boston brace as a teen for AIS
    Oct 2010 fusion T8-sacrum w/ pelvic fixation, TLIF at L4/5.
    Feb 2012 major A/P revision for broken rods


    mom of Leah, 12 y/o, diagnosed Jan '08 with 26* thoracic JIS (age 6)
    4/08 26 degrees, brace 16 hrs/day
    9/08 17 deg. OOB - brace discontinued
    9/09 30 deg, resuming brace
    5/10 VBS Dr Luhmann Shriners St Louis
    5/14 stable 4 yrs post-op, 14* T

    also mom of Torrey, 9 y/o son, 12* T, decreasing spontaneously (from 19*)

  5. #35
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    Wow, this looks like a very interesting article. Seems to touch on all the things we've been discussing on this forum. I would love to read it. If anyone does get access to it, please post if you're able. Thanks!

  6. #36
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    I have the entire History of Bracing article and it is very interesting. If someone can please tell me how, I will post it or a link to it--it is 11 pages long. Anyone out there who knows how to do this? I have it in PDF form.
    Last edited by leahdragonfly; 05-28-2009 at 07:52 PM.
    Gayle, age 47
    Boston brace as a teen for AIS
    Oct 2010 fusion T8-sacrum w/ pelvic fixation, TLIF at L4/5.
    Feb 2012 major A/P revision for broken rods


    mom of Leah, 12 y/o, diagnosed Jan '08 with 26* thoracic JIS (age 6)
    4/08 26 degrees, brace 16 hrs/day
    9/08 17 deg. OOB - brace discontinued
    9/09 30 deg, resuming brace
    5/10 VBS Dr Luhmann Shriners St Louis
    5/14 stable 4 yrs post-op, 14* T

    also mom of Torrey, 9 y/o son, 12* T, decreasing spontaneously (from 19*)

  7. #37
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    Hi Leah...

    If you picked up the PDF on the internet, you can simply copy the link location by right clicking on the link that you used to get to the PDF. If not, I think all you have to do is attach the file to a message (see Additional Options below the Reply to Thread box).

    Regards,
    Linda

  8. #38
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    Ok Linda, I followed your instructions but the file limit for attaching PDF's is 100 kb, and the article is 364 kb. CD, are you out there? You're good at attaching files and links, any tips?
    Gayle, age 47
    Boston brace as a teen for AIS
    Oct 2010 fusion T8-sacrum w/ pelvic fixation, TLIF at L4/5.
    Feb 2012 major A/P revision for broken rods


    mom of Leah, 12 y/o, diagnosed Jan '08 with 26* thoracic JIS (age 6)
    4/08 26 degrees, brace 16 hrs/day
    9/08 17 deg. OOB - brace discontinued
    9/09 30 deg, resuming brace
    5/10 VBS Dr Luhmann Shriners St Louis
    5/14 stable 4 yrs post-op, 14* T

    also mom of Torrey, 9 y/o son, 12* T, decreasing spontaneously (from 19*)

  9. #39
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    Sorry, been out of town for a couple of days.

    Leah, the issue isnt so much attaching the file (we could work around that by breaking the PDF into 100K chunks and posting in pieces). The issue is copyright infringement.
    Papers published in Scoliosis Journal (SOSORT) are posted online. There is no problem linking to them.
    Some SpineCor papers are posted online (presumably after having received permission).
    But I believe this paper is protected by copyright. I do not know the specifics of the law. I have shared, via email, certain papers with other members here and at least my conscious was fine as it was between parent and parent (our intent is to help our kids, not open a commercial enterprise).

    If memory serves me correctly, it is OK to post extracts (I think the limit is 10% of the text) so long as it is attributed.

    I could be wrong on this and if anyone has any details or workarounds it would be great if all of us could share the literature openly. But, until then, I think we're going to be limited to sharing relevant papers via email.

  10. #40
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    In another thread in research I mentioned this paper by the Axial Biotech guys that was presented at SOSORT last week.

    I was hoping it might be a topic of interest, and perhaps it is more appropriate to post it here.

    They have a graph at the bottom of the Abstract comparing the calculated risk of progression for two groups of kids. One is braced and the other is not. This is a whole new way of looking at the issue of bracing and I think it is fascinating.

    It took me a while to figure out just what they were plotting but I think I have it. To get a data point for the two groups at, say, Scolioscore 100, they take all the kids with that Scolioscore and present the percent of those who progressed to 50 degrees. (it looks to me like 25% of the observation group and 35% of the braced group with scolioscores of 100 progressed).

    If bracing had a positive effect, we would expect to see a significant divergence of the curves. (They didnt see that, in fact, they saw the opposite which would suggest, if you had a scolioscore of 100 your risk of progression would be decreased if you did NOT wear a brace).

    Now, they didnt go on to make any major conclusions about bracing efficacy. I would love to see the actual data points on their curves to see just how scattered things are but I am betting it is proprietary.

    The conclusion they did make was that in designing bracing studiies, not only do researches need to consider all the usual stuff (curve type, age, maturity, etc) but they also need to consider genotype homogeneity. You can't compare bracing efficacy between, say, two 11 year old girls, Risser 0, 30 degree curves with one having a "scolioscore" of 25 and the other having a "scolioscore" of 150.

    But I thought this was an interesting way to use the data they collected. I wonder if they have enough detail to break it down and analyze other differences between the kids (besides braced vs no braced, maybe by geographic latitude (to look at Dingo's Melatonin thing) or by brace type or by use of an excercise therapy.

    Comments anyone?

  11. #41
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    Quote Originally Posted by leahdragonfly View Post
    Ok Linda, I followed your instructions but the file limit for attaching PDF's is 100 kb, and the article is 364 kb. CD, are you out there? You're good at attaching files and links, any tips?
    Leah...

    Would you mind sending the PDF to me in an email? (linda@scoliosislinks.com).

    --Linda

  12. #42
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    CD...

    That's pretty interesting. As always, however, we don't know how good the braces were (did they all get at least 50% in brace correction?). And, we don't really know how compliant the kids were (the study says compliant, but I'm sure that's self reported at best).

    Regards,
    Linda

  13. #43
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    Hi CD,

    I guess after looking at that chart by the Axial Biotech guys, I just don't believe it. It makes me think there's something wrong with the Scolioscore, not with bracing. Or, as Linda pointed out, something wrong with the bracing used in this study. Of course, I'm sure they're a lot smarter than me and I don't have any of the info, but just on the face of it, don't you think that if bracing caused a greater risk of progression than not bracing, that all these very intelligent orthopedic surgeons would have continued to brace in the face of years of evidence? I just don't buy it. And especially with the results my daughter has had....surely she is not the only patient out there who has been successful with bracing. (Yes, yes, I know that she could continue to progress once she stops bracing, but I'm thrilled to have that roll of the dice, nothing is guaranteed for anyone in this scoliosis world I'm afraid).

    Are the Scolioscore guys sure they're pinpointing the risk of scoliosis progression itself and not something else like the tendency towards double-jointedness in people, which seems to be a possible indicator for potential scoliosis? I could see genes being detected by the test that reflect double-jointedness and then there could be an additional trigger that causes the progression of scoliosis (like Dingo's hypotheses) that would not be being shown with the DNA test, which make the results not useful in my thought process.

    Anyhow, for what it's worth, their study just doesn't make logical sense to me .

  14. #44
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    Quote Originally Posted by Ballet Mom View Post
    Hi CD,


    Are the Scolioscore guys sure they're pinpointing the risk of scoliosis progression itself and not something else like the tendency towards double-jointedness in people, which seems to be a possible indicator for potential scoliosis? .
    Well, whatever they are pinpointing they sure think it is related to scoliosis.

    A risk of progression score was calculated using 53 genetic markers with utility for calculating the risk of AIS curve progression from <25° to >40° before skeletal maturity or >50° at maturity (1-200).

    I would likke to know just strong the predictive capabality of the test is.


    They calculate a "risk". Qualitatively, a higher scolioscore yields a higher risk. But, say you have a scolioscore of 100 which equates roughly to a risk of 35% that you will progress to either greater than 40* (before maturity) or greater than 50* (at maturity), it still doesnt tell you "for sure" anything. It just tells you you have a 35% chance of that happening.

    The greater utility (in my mind at least) is for comparisons of groups like they did in this study. You would have expected different outcomes for the same genotype with bracing and observation, and they didnt see it (with a fairly large sample size).

    It would be nice to see a full paper discussing this rather that a brief abstract. Maybe one will be out soon.

  15. #45
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    Several good points being made by folks.

    First, I agree the bracing efficacy could be artificially low due to many factors:

    1. non-perfect compliance
    2. not weeding out connective tissue cases from AIS
    3. improperly fitted braces
    4. etc.

    These issues and others make the bracing literature a mess which also means there could be a cohort out there who do respond to bracing and can avoid surgery in their life. We may never know because it is so hard to do a study and because the treatment is not benign.

    It is interesting that this isn't the first reference we have seen to bracing being LESS effective to stop progression that observation. Maybe there is a cohort out there whose scoliosis does get worse with muscle atrophy from brace wear. (Note I don't think this applies to part-time, night-time bracing if the kid is exercising during the day.) As I have suggested, bracing and PT work in opposite fashions so they likely both can't work for keeping a person sub-surgical their entire life. But if true, that means there is something to the muscle tone theory which I trashed just yesterday.

    In re Scoliscore, they may be pin-pointing other things like double-jointedness also but they are definitely pin-pointing the risk of progression in scoliosis also. It's the only thing they measured (or at least showed on that graph) so it has to be what they are pin-pointing. Now if they don't have enough subjects or they otherwise have holes in their method then it is still a false conclusion.

    Also, I am suspicious of graphs without error bars. In this case, though, they are not trying to tease out a nuance between the two curves so it seems okay to say they are the same curve.
    Last edited by Pooka1; 05-30-2009 at 11:15 AM.
    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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