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Thread: Janzen Bracing System for JIS

  1. #16
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    Quote Originally Posted by Dustin76 View Post
    Here is how I see this so far from what I am seeing with them and in the literature. 70% of JIS cases are going on to reach surgical stage per literature reports. Yet, only 10% of AIS cases are being reported as going on surgical stage in the literature. Something about that doesn't seem to jive. But anyway, even with a 10% chance of going on to surgery with the AIS cases, the Janzen's are saying that, over the course of their history of treating AIS cases, they have a 100% success rate so far for keeping the 10-24 degree range from going on to surgical stage. I think they would agree that it could be 90% chance versus 100%. If you could choose to be treated and instead of a 10% chance of having rods put in your back, you have a 0%, would you do it (assuming you were buying into the methods - which I know you are not)?
    In terms of AIS, I think the published odds of progression in a <25* are near zero almost irrespective of Risser. There is a reason medical professionals don't brace small curves. And there is ZERO evidence chiro or PT prevents small curves from progressing. We are comparing 99.something versus the Janzenes claim of 100% in an unknown size group in an unknown degree of sequential cases in an unknown way to know what is happening with patients who leave. I am very confident the 100% figure the Janzenes posted for treatment success in small curves that you state are AIS (and not JIS) is literally laughable. Taking credit for a treatment, any treatment doing well in that group is just ignorant (or lying to the bunnies who have no idea of the research). They at least should admit about half of the braced kids were braced needlessly and when discussing curves <25*, 100% were needlessly braced.

    Even using your 10% figure, you are assuming that the brace will work EVERY time it is used when it is needed. That is absolutely false. It is more like 99% will not progress anyway and maybe 25% of the rest will fail bracing and need surgery. So when we consider the n's these guys are dealing with, they are CLEARLY misleading the bunnies.

    Remember, the only people trained to treat scoliosis don't brace small curves for a reason.

    I would, especially seeing that their interventions at the just over 10 degree range are pretty minimal. Age of the patient here would be a huge factor in the treatment plan as well. 20 degree curve in 14 y/o is a lot different animal than 20 degree curve in a 10 y/o(almost still JIS category).
    Yes but we still have the published odds of progression in that size curve and it is near zero or zero depending on the n. There is a reason real doctors do and don't do things. Medical doctors are REQUIRED to be intellectually honest. There is more intellectual DIShonesty on the Janzenes page than you can shake a stick at. They know they have a bunch of scared bunny parents who don't know what they don't know and think doing something is always better than doing nothing. That is not true in scoliosis when it comes to a hard treatment like bracing.

    As to your question about how they handle kids that leave treatment, I'm not sure. I know they said their statistics include non compliant patients.
    It seems like only one of the set of three stats talks about this. I take this to mean the other two stats DO NOT.

    They probably have no way to follow the course for patients that leave care before skeletal maturity. I would guess the "100%" is referring to people that have stuck with them to skeletal maturity and that the average curve reductions in each category include the data of all patient's until they leave early or go through to the end. But I can ask.
    There are several cases they post that are NOT at skeletal maturity and they are counting them as successes. Is that honest or dishonest?

    Several years ago, a father came on here with plenty of hope for bracing. I pointed out that the bracing literature was a train wreck and the SRS admitted that. This father is a scientist, read the literature, and took his daughter out of brace. She did not progress to surgery while she was still growing. Then in her early 20s as I recall, her curve took off and she was fused. In this case, had she been wearing a brace, the Janzenes would have called that a success. In fact she would have worn the brace needlessly as an adolescent. It looked like she was successful with no treatment in that she got years past the end of growth having and curve in the 30s if I recall correctly. Then her curve took off.
    Last edited by Pooka1; 10-22-2019 at 09:41 PM.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
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    "We are all African."

  2. #17
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    Quote Originally Posted by Dustin76 View Post
    Also, regarding your statements above and regarding the BrAIST study that you mentioned.
    I get the gist of the BrAIST study, but I'm just now digging into it more. One interesting thing that I am seeing so far with the BrAIST study is this: They (the BrAIST authors) start out initially saying that 10% of all AIS go on to surgical stage which they define as 50 degrees. Yet, in the BrAIST trial, 25% or so of the braced group goes on to surgical and close to 60% of the non-braced go on to surgical. They included kids with a largest curve in the 20-40 degree range in the study.
    I associate myself with Concerneddad's response. :-)

    When it comes to scoliosis, it is CRITICAL to keep the bins in mind. Be very clear about what the base is when people talk about percentages. You are inadvertently veering into apples and oranges territory.

    So, to me one thing among many things, that this study is suggesting, is that IF a kid is in 20-40 degree range of AIS and not braced, *they have a near 60% chance of going on to surgical level*. So, it's a little more complicated than your, "They are misleading parents by not stating that these curves are very unlikely to progress even with NO treatment. They are either ignorant or lying about this. There is no third option." statement. I disagree with you on this.
    I was talking about the <25* curves. You are talking about 20-40 degree curves. It is so important to know your bins... JIS/AIS, age, Cobb, Risser, etc..

    Anything over 20 degrees could really be playing with fire with up to 60% chance of progression to surgical - again, really depending on skeletal maturity level. BrAIST findings do, however, suggest that under 20 degrees and not rapidly progressing could be good grounds for the wait and see approach. I asked Janzen's what they do with just-over 10 degrees curves and if I remember right, they said either wait and see, soft brace, exercises, etc. If it progressed, say from 10 to 20 in just 3 months (they monitor every 3 months via non-harmful, 2.5 minute upright MRI) they might lean toward some frequency of rigid brace I would think, but not sure.
    Anything under 30* is considered protective against progression to surgery territory in one's lifetime.

    BrAIST is far from the only study to support watch/wait in small curves.

    If a kid progresses from 10* to 20* in 3 months, the intellectually honest thing to do is refer them to a board-certified pediatric orthopedic surgeon. It is scary to me that chiros are treating kids for scoliosis. These are literally two ends of a spectrum... orthopedic surgeons are the cream of the medical school crop (you need a high score on the test taken after second year of med school) and likely had a 3.8 or better as undergrads, and chiros are entering chiro school with 2.0 or less in some cases and getting a voodoo education. Who do you want treating your child???

    I'm sure I'll have more on the BrAIST study after I get through it.
    I look forward to your opinion on the BrAIST study. While I honed in on their success criteria, professional comment about the study included questions on Cobb readings and whether they were done consistently or something. I was a little surprised to see that. While there is some intra- and inter-reader error, I would not think that is the biggest problem with this study.
    Last edited by Pooka1; 10-22-2019 at 09:26 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."

  3. #18
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    Apropos of this

    Quote Originally Posted by Pooka1 View Post
    I associate myself with Concerneddad's response. :-)


    I look forward to your opinion on the BrAIST study. While I honed in on their success criteria,professional comment about the study included questions on Cobb readings and whether they were done consistently or something. I was a little surprised to see that. There is some intra- and inter-reader error, I would not think that is the biggest problem with this study.
    Apropos of this, I bought a protractor and taught myself how to measure Cobb angles. It's SHOCKING how much the measurements can vary. Same observer (me!), same curves (the daughter's!), same scans, and I get anywhere between 28 and 38 on the top and 32 and 36 on the bottom. (Over four docs, the ranges are 29 and 35, and 32 and 35.) It's really hard to figure out what line is exactly parallel to the most tilted vertebrae, because they're not perfect rectangles.

    (I did convince myself that the doc was understating things on the in-brace correction, especially with the lumbar curve. I think a 34-35 curve corrected to 26-27 after repeated measurements, which is 20%+. Not great, but not "about the same.")

  4. #19
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    Quote Originally Posted by Concerneddad View Post
    Apropos of this, I bought a protractor and taught myself how to measure Cobb angles. It's SHOCKING how much the measurements can vary. Same observer (me!), same curves (the daughter's!), same scans, and I get anywhere between 28 and 38 on the top and 32 and 36 on the bottom. (Over four docs, the ranges are 29 and 35, and 32 and 35.) It's really hard to figure out what line is exactly parallel to the most tilted vertebrae, because they're not perfect rectangles.

    (I did convince myself that the doc was understating things on the in-brace correction, especially with the lumbar curve. I think a 34-35 curve corrected to 26-27 after repeated measurements, which is 20%+. Not great, but not "about the same.")
    First, I corrected the typos in my post!

    Second, I think if you practiced, you could consistently identify the most tilted vertebra. Then you just have to carefully find the edge which may be hard on some radiographs. That said, on complex curves I am not sure which vertebra to use.

    I think (not sure) that when different doctors get different readings, they are eyeballing the most tilted vertebra and not rigorously determining it and may be selecting different vertebra. I think they do this because it doesn't matter when you have variation just from morning to evening (morning read is lower). This is a tough business and I am glad it is not my research field from that standpoint although when my daughters were diagnosed, I wish it was.
    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."

  5. #20
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    Quote Originally Posted by Pooka1 View Post
    First, I corrected the typos in my post!

    Second, I think if you practiced, you could consistently identify the most tilted vertebra. Then you just have to carefully find the edge which may be hard on some radiographs. That said, on complex curves I am not sure which vertebra to use.
    It's not so much finding the most tilted vertebrae -- in my kid's case, that's easy -- it's just that they aren't perfect rectangles with perfectly straight edges, and finding the line that is exactly parallel to the top of the top one and bottom of the bottom one can be difficult. And if you're off by even a hair, it can cause several degrees of difference. I'd guess that orthos have regression programs that smooth out the non-straight vertebrae edge into a straight line. That's how I'd do it, at least.

  6. #21
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    Quote Originally Posted by Concerneddad View Post
    It's not so much finding the most tilted vertebrae -- in my kid's case, that's easy -- it's just that they aren't perfect rectangles with perfectly straight edges, and finding the line that is exactly parallel to the top of the top one and bottom of the bottom one can be difficult. And if you're off by even a hair, it can cause several degrees of difference. I'd guess that orthos have regression programs that smooth out the non-straight vertebrae edge into a straight line. That's how I'd do it, at least.
    That sounds like just another factor why orthopedic surgeons don't sweat the details on measurements and just need to see large changes I suspect.

    As a parent, I sweated every single degree but noticed the surgeon didn't. LOL
    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."

  7. #22
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    Quote Originally Posted by Pooka1 View Post
    That sounds like just another factor why orthopedic surgeons don't sweat the details on measurements and just need to see large changes I suspect.

    As a parent, I sweated every single degree but noticed the surgeon didn't. LOL
    Yup. I think that's exactly right.

  8. #23
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    Hey Dustin, check this out... success of part time bracing in JIS...

    https://pdfs.semanticscholar.org/8b5...05f50c88c0.pdf

    This is part of the train wreck literature though, in the small n and uncontrolled nature of the study but there you go. This came out before equipoise was declared I think. The equipoise acknowledged that the bracing literature to that date was so bad that a controlled study with an unbraced group was ethical. I am not faulting these researchers or any of the others involved in the train wreck. This is a difficult research field. But science doesn't care if the field is difficult and doesn't relax its standards for anyone (except chiros apparently LOL).

    Anyway note ref 5 which makes the case that JIS and AIS are clinically distinct beyond age of diagnosis. I am guessing they discuss the items I mentioned and probably many other differences.

    Robinson CM, McMaster MJ. Juvenile idiopathic scoliosis.J Bone Joint Surg 1996;78:1140–8.

    By the way I think JIS is going by the wayside in favor of early onset which groups IIS and JIS.
    Last edited by Pooka1; 10-23-2019 at 08:12 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."

  9. #24
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    Quote Originally Posted by Dustin76 View Post
    I agree with everything you are saying. That was kind of my point. Susan was saying [...]
    My name is Sharon. I point it out only because I intend to use "Susan" if I am ever accepted into the Federal Witness Protection Program, a life goal of mine. So I would appreciate if you not use that name. :-)
    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."

  10. #25
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    Quote Originally Posted by Pooka1 View Post
    My name is Sharon. I point it out only because I intend to use "Susan" if I am ever accepted into the Federal Witness Protection Program, a life goal of mine. So I would appreciate if you not use that name. :-)
    Sorry Sharon. My apologies.

  11. #26
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    [QUOTE=Pooka1;171681]In terms of AIS, I think the published odds of progression in a <25* are near zero almost irrespective of Risser.

    I am not seeing evidence in the literature so far for your statement above.

    The BrAIST authors define high risk for progression as over 20 degrees it seems. One of their references used to establish this includes puts those over 25 degrees as included in the "those at most risk for progression category" - granted this is kind of vague.


    See table below from a literature review from: Am Fam Physician. 2001 Jul 1;64(1):111-117

    TABLE 2
    Risk of Curve Progression
    CURVE (DEGREE) GROWTH POTENTIAL (RISSER GRADE) RISK
    10 to 19 Limited (2 to 4) Low
    10 to 19 High (0 to 1) Moderate
    20 to 29 Limited (2 to 4) Low/moderate
    20 to 29 High (0 to 1) High
    >29 Limited (2 to 4) High
    >29 High (0 to 1) Very high

  12. #27
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    [QUOTE=Dustin76;171700]
    Quote Originally Posted by Pooka1 View Post
    In terms of AIS, I think the published odds of progression in a <25* are near zero almost irrespective of Risser.

    I am not seeing evidence in the literature so far for your statement above.

    The BrAIST authors define high risk for progression as over 20 degrees it seems. One of their references used to establish this includes puts those over 25 degrees as included in the "those at most risk for progression category" - granted this is kind of vague.


    See table below from a literature review from: Am Fam Physician. 2001 Jul 1;64(1):111-117

    TABLE 2
    Risk of Curve Progression
    CURVE (DEGREE) GROWTH POTENTIAL (RISSER GRADE) RISK
    10 to 19 Limited (2 to 4) Low
    10 to 19 High (0 to 1) Moderate
    20 to 29 Limited (2 to 4) Low/moderate
    20 to 29 High (0 to 1) High
    >29 Limited (2 to 4) High
    >29 High (0 to 1) Very high
    The fact that the chart characterizes the the risk of progression of curves under 30 at Risser 4 (and really, probably, under 35) as anything greater than "near zero" should be a pretty big tell that something's up with the chart.

  13. #28
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    [QUOTE=Concerneddad;171701]
    Quote Originally Posted by Dustin76 View Post

    The fact that the chart characterizes the the risk of progression of curves under 30 at Risser 4 (and really, probably, under 35) as anything greater than "near zero" should be a pretty big tell that something's up with the chart.
    Maybe, and there's probably more to the story, but the jist of the article is a lot different than what Sharon is saying. I'm not declaring Sharon definitely wrong. This is what I am seeing so far. The full text is online for free.

  14. #29
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    [QUOTE=Dustin76;171702]
    Quote Originally Posted by Concerneddad View Post

    Maybe, and there's probably more to the story, but the jist of the article is a lot different than what Sharon is saying. I'm not declaring Sharon definitely wrong. This is what I am seeing so far. The full text is online for free.
    Ah. I see. The article is using "risk of progression" to mean *any* progression over a lifetime, not progression to surgery. So a kid who hits Risser 4 with a 30 degree curve counts as "progressing" if the curve grows 10 degrees over her entire life, even though she would be perfectly asymptomatic and never need surgery. For all I know those numbers are right (though I have some doubt that a Risser 4 kid with a curve in the 20s really has a 5-40% chance of progression as an adult like the article says), but it doesn't really matter. I don't care if my kid with a curve in the low-to-mid 30s progresses 10 degrees by the time she is an old woman. I care (1) most about whether she is going to need surgery while she's a teenager and (2) still a lot but not as much if she is likely to need surgery as an adult.

  15. #30
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    [QUOTE=Concerneddad;171703]
    Quote Originally Posted by Dustin76 View Post

    Ah. I see. The article is using "risk of progression" to mean *any* progression over a lifetime, not progression to surgery. So a kid who hits Risser 4 with a 30 degree curve counts as "progressing" if the curve grows 10 degrees over her entire life, even though she would be perfectly asymptomatic and never need surgery. For all I know those numbers are right (though I have some doubt that a Risser 4 kid with a curve in the 20s really has a 5-40% chance of progression as an adult like the article says), but it doesn't really matter. I don't care if my kid with a curve in the low-to-mid 30s progresses 10 degrees by the time she is an old woman. I care (1) most about whether she is going to need surgery while she's a teenager and (2) still a lot but not as much if she is likely to need surgery as an adult.
    Sorry for the confusion, yes I was using progression as meaning getting worse (significantly, not just a few degrees).


    Still....

    In the BrAIST study, 52% of the observation (non-braced) group went on to surgical level. This is with all participants with 20-40 degree curves with an average or mean (canít tell which they are using) curve of about 30 degrees. They donít seem to break down if those going on to surgical were mostly the 30-40 portion of the 20-40 group or what. However, for my part so far, Iím pretty cautious to say that itís all fine if the curve is 20-25 and very unlikely to progress period, or to say that itís very unlikely to progress to surgical stage, especially with low Risser. These were my quick-review conclusions for AIS, before deciding to have our kids braced ( for my kids and for general knowledge, I am looking at JIS and others as well but seeing cross-over with JIS and AIS). I have not seen enough to change my course of action so far. Iíll keep looking.

    My sonís largest curve is 25 out of brace and essentially 0 (couple degrees off)in brace for all curves ( he is not AIS as a 5 year old and other issues, and I know we are talking more AIS here, but still). My 8 year old daughter ( also not AIS but not too far from that classification) has largest curve of 20 and also essentially 0 in brace for all curves right now. My son is sleeping through the night fine and out of brace 10-11 hours/day to get plenty of exercise. My daughter is on her first week adjusting about as expected. So far Iím rolling the dice this (what I see as more aggressive than usual but still conservative) route. Iím fine with you or Sharon trying to convince me otherwise. I see that I am now allowed to post images, so I will post my kidís initial out of brace and in brace images soon and document the journey as it goes.

    I remember reading, and Iíll have to get the references, but there was evidence of those curves that are 30+ progressing further in adulthood at some frequency and then high likelihood of progression in adulthood if coming in at 50 degrees +. Curves of idiopathic origin were unlikely if ever progressing if reaching skeletal maturity in 20s degrees if I remember right.

    Also interesting to note:
    1)However positive bracing results are defined, It seems consistent that more time in brace = better results across the board for the studies that exist.
    2)BrAIST (maybe the best bracing study so far) was consistent with this: 72% of the braced group did not progress on to surgery, but in breaking it down further, 93% of kids that stayed in brace at least 12.9 hours per day did not progress to surgical level - it seems this includes some kids with curves in 30s and near 40. The participants were asked to get 18 hours per day, but it looks like compliance for the study was not great overall. What if all/most participants were in brace the prescribed 18 hours per day? Maybe 100% avoid progression to surgical?
    3) Frustratingly, BrAIST makes no mention of how much, if any, correction was achieved in brace which makes me wonder if there was any significant in-brace correction being achieve. I know for sure from my first-hand experience with my kids that pretty dramatic in-brace correction can happen. Even more frustrating, is that I canít find any studies discussing the amount of correction achieved in brace. Is it just assumed that there will be no or minimal correction in brace?? In brace correct ability was/is one of the most important factors I wanted information on. I can claim first-hand experience with major in-brace correction, but I can't prove it to you in the literature.
    4) It seems supported in the literature and very reasonable to propose that, IF good in-brace correction can be attained and maintained through to skeletal maturity, it could be maintained out of brace in skeletal maturity if in low 20 degree curves or less. It also seems reasonable to propose that, the closer to neutral spine achieved in brace, the less likely there will be regression when skeletally mature.

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