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Thread: Extended Wong comments

  1. #61
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    Quote Originally Posted by LindaRacine View Post
    Save your time. If someone wore a brace, and has not had to have surgery, there's no proof that the brace was the cause of that result. It's entirely possible that the person who was braced wouldn't have needed surgery in the first place, and there's also no guarantee that they won't need surgery in the future.
    I really don't believe that growing kids who are rapidly progressing suddenly just stop progressing, and therefore one can conclude that successful bracing wasn't due to the brace. Progression of the curve seems to me to be a function of growth. Unless they stop growing, the curve continues unless they have a brace that is able to stop it.

    I have posted many studies on this forum showing that most of the people who have worn braces successfully don't progress past the initially diagnosed curve size. Over the years, they do revert back to the original curve size but they usually do not progress beyond it.

    The studies also show that most people under 40-50 degrees do not continue to progress when they are adults. And most of these surgeons state that fact, and you certainly all believe what the surgeons state! Why not believe them in this?

    I think it's a shame that you have these preformed opinions about bracing in your mind when you think you might be working on bracing studies. Perhaps you should exclude yourself from these pediatric bracing studies. It's called bias.

    This forum really just needs to be true to itself and state that it is a surgical forum for scoliosis. Obviously in your minds bracing doesn't work and never will and everyone else should just move along.

    Might I suggest http://www.scoliosis-support.org for parents bracing their kids and spinekids for kids being braced http://www.spinekids.com.

  2. #62
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    Quote Originally Posted by LindaRacine View Post
    Save your time. If someone wore a brace, and has not had to have surgery, there's no proof that the brace was the cause of that result. It's entirely possible that the person who was braced wouldn't have needed surgery in the first place, and there's also no guarantee that they won't need surgery in the future.
    I don't think we have any hard proof of that statement, outside of personal opinion. If I were to make a list - I would probably begin with Joe O'Brien's family.

    http://www.scoliosis.org/forum/showthread.php?t=8765

  3. #63
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    I'm not entirely sure what you were trying to convey in your post, Ballet Mom, but there are some clarifications to make ...

    Quote Originally Posted by Ballet Mom View Post
    Unfortunately, with a 35 degree thoracic curve at diagnosis, you wouldn't be eligible for VBS (except with growing rods).
    It may surprise you to know I'm extremely familiar with current (and past) criteria for VBS.

    You clipped my words from a Nov 2007 post, and at that time they were absolutely stapling 35 curves. Betz's group didn't publish the revised VBS corrolaries that specified the addition of the hybrid rod until March 2008.

    My curve at surgery was 50. It measured 48-53 well into adulthood. If it was actually 35 at age 10 (I did say "I think" in my post ... it could have been higher: I never recall a lower number), it really could have been as high as 40 with the margin of error.

    At the closest end, we're talking 8 movement with non-compliant bracing, and even if it moved 15 out of brace, it's tough to argue the brace was doing much for me. Let's say I'd been compliant: Correction wouldn't have been expected as Bostons do not correct. At best, they may hold some curves.

    Quote Originally Posted by Ballet Mom;
    I would throw your data out due to bracing non-compliance. No doubt the studies are full of non-compliance failures such as yours, making the bracing data look worse than it is for those who actually are compliant.
    FYI - I was largely compliant for the first year I had my brace - and my curve still moved.

    That said, I'd probably throw my data out of a bracing study too, but I'm curious: What categorizes me as a non-compliance failure to you? I moved less in non-compliance than compliant patients often do.

    Quote Originally Posted by Ballet Mom;
    You didn't wear your brace and you must have progressed to just over 50 degrees as would be expected, and then held there until you chose surgery for pain relief.
    The statement "... you must have progressed to just over 50 degrees as would be expected, and then held there until you chose surgery ..." is inherently flawed by the fact 50 curves aren't expected to stop.

    As I've said before, some curves will move regardless of treatment - and some will stabilize no matter what. It's fairly obvious mine falls in the latter category.

    I'm sorry you feel there's so much anti-bracing angst here. Until I see some convincing data on bracing (and as Linda pointed out, there are near insurmountable - in my opinion - unknowns and variables) that proves otherwise, I just don't have much faith in it. When it comes to AIS, that faith drops to almost nil.

    That said, I really do hope it works for you. The two sentiments aren't mutally exclusive.

    Best regards,
    Pam
    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
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  4. #64
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    Quote Originally Posted by Ballet Mom View Post
    Damn, where to start.....?

    txmarinemom,

    Your post from the archives:


    /
    /



    Unfortunately, with a 35 degree thoracic curve at diagnosis, you wouldn't be eligible for VBS (except with growing rods).
    Just to clarify, a child with a 35 degree curve is not automatically disqualified as being a candidate for VBS alone. Since 35 degrees is the cutoff, it could go either way. My educated guess is that they would look at curve flexibility, amount of growth remaining, and possibly other factors - and then decide.

    Even now, with the revised criteria, some kids at 35 have been candidates for VBS - and others have not. So to say that Pam would not have been a candidate at 35 degrees is not necessarily true.
    Last edited by mariaf; 12-08-2009 at 03:44 PM.
    mariaf305@yahoo.com
    Mom to David, age 17, braced June 2000 to March 2004
    Vertebral Body Stapling 3/10/04 for 40 degree curve (currently mid 20's)

    https://www.facebook.com/groups/ScoliosisTethering/

    http://pediatricspinefoundation.org/

  5. #65
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    Quote Originally Posted by txmarinemom View Post

    I'm not entirely sure what you were trying to convey in your post, Ballet Mom, but there are some clarifications to make ...

    It may surprise you to know I'm extremely familiar with current (and past) criteria for VBS.
    It doesn't surprise me at all.

    You clipped my words from a Nov 2007 post, and at that time they were absolutely stapling 35 curves. Betz's group didn't publish the revised VBS corrolaries that specified the addition of the hybrid rod until March 2008.
    Do you recognize this? It's from post #51 just several posts above this one. It is not clipped from a 2007 post. They haven't been stapling 35 degree thoracic curves for at least a year and a half or more.

    As a child diagnosed with JIS, do I wish VBS had been around in 1979? You bet. I can't manage to work up the same longing for Spinecor in '79.

    The braced child in me - and the fused adult - views Spinecor as just another brace, and I haven't seen proof otherwise.

    And I'm still not convinced *any* of them work on many of us.

    Pam
    /
    /

    That said, I'd probably throw my data out of a bracing study too, but I'm curious: What categorizes me as a non-compliance failure to you? I moved less in non-compliance than compliant patients often do.
    You didn't wear your brace as directed. Fortunately, they now have sensors to use to determine that.

    You progressed from roughly 35 degrees to roughly 50 degrees (even though it was made to sound that your curve didn't move while being non-compliant in your first post). That fails in both the amount of progression and also reaching surgical territory. Two different methods of determining failures.

    I believe if someone was wearing a brace compliantly and they had the amount of progression you did, it would be considered a brace failure and should be included in a study.

    The statement "... you must have progressed to just over 50 degrees as would be expected, and then held there until you chose surgery ..." is inherently flawed by the fact 50 curves aren't expected to stop.
    It's not inherently flawed, I'm simply stating that if you don't wear your brace as prescribed when you have a progressive curve, you must expect that you will progress.

    A +/- 50 degree curves is within the 40 to 50 degree range of curves that is stated as not necessarily progressing. I think you have to be cautious when you are on the borderline of study results.

    I'm sorry you feel there's so much anti-bracing angst here.
    It is not just my feeling that there is so much anti-bracing angst here. It is quite obviously here to any unbiased observer. I wonder why the three of you want so badly to convince parents and kids coming on this forum that all hope is lost with bracing and you might as well just give up. Think about how many people you have negatively influenced. But, you are the ones that have to live with that on your consciences.

    Until I see some convincing data on bracing (and as Linda pointed out, there are near insurmountable - in my opinion - unknowns and variables) that proves otherwise, I just don't have much faith in it. When it comes to AIS, that faith drops to almost nil.
    That is your opinion, which is a very small sample size by the way.

    And since when is science so small that they aren't able to figure out these unknowns and variables at least for AIS? It seems to me that most of the major ones could be figured out fairly easily. That said, there are always outliers, of course.

    I wish everyone on the board the best also, both bracing and surgical.

  6. #66
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    Quote Originally Posted by mariaf View Post
    Just to clarify, a child with a 35 degree curve is not automatically disqualified as being a candidate for VBS alone. Since 35 degrees is the cutoff, it could go either way. My educated guess is that they would look at curve flexibility, amount of growth remaining, and possibly other factors - and then decide.

    Even now, with the revised criteria, some kids at 35 have been candidates for VBS - and others have not. So to say that Pam would not have been a candidate at 35 degrees is not necessarily true.

    Once again, it's thoracic curves that are cut off at this point. They got better results with lumbar curves, just like bracing gets better results with lumbar curves.

  7. #67
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    Pam will correct me if I'm wrong but Pam's curve got to about 50* when she was a teenager and then didn't advance for about two decades (until she was fused for pain).

    If that is correct, if even a 50* curve can be stable and not increase the expected 1* per year for about two decades then any curve less than that can easily stop on its own and stay stable. This is will always be the Achilles heel in uncontrolled bracing studies and even in individual patients if you can eventually show say 15% or whatever are held by brace who would have otherwise progressed.

    But I am with Pam on her point about this possibly being an intractable subject to study. Some conditions are so variable that it is virtually impossible to predict with any certainly what a given patient's curve will do including a teenager with a 50* curve that was stable for about two decades and might have been stable forever absent her fusion for pain.

    Perhaps I'm missing something?
    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."

  8. #68
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    Quote Originally Posted by Pooka1 View Post
    Perhaps I'm missing something?
    You're not missing anything on my end, Sharon.

    Ballet Mom, I'm still confused: You clipped that post from NOV 2007, as far as I can tell. They WERE (and are, in some cases *still*) stapling 35 curves.

    What exactly is your point?
    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

  9. #69
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    Okay I'm glad I got that right.

    So furthermore, if Pam got to at least 35*-40* at 10 years old then was largely compliant from 10 to 11 years old and then not compliant, that means she was likely NOT wearing the brace as directly during her growth spurt. She reached 50* probably at the end of her growth spurt and then stayed there for about 20 years.

    That is NOT what is thought to be likely. That is, if she got from 35/40* to ~ 50* in say a year, that is NOT the kind of trajectory that is then expected to stop in its tracks and be completely stable for two decades. And if that can happen without a brace then anything can happen without a brace. That is the problem.
    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. #70
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    Quote Originally Posted by Ballet Mom View Post
    I really don't believe that growing kids who are rapidly progressing suddenly just stop progressing, and therefore one can conclude that successful bracing wasn't due to the brace. Progression of the curve seems to me to be a function of growth. Unless they stop growing, the curve continues unless they have a brace that is able to stop it.

    I have posted many studies on this forum showing that most of the people who have worn braces successfully don't progress past the initially diagnosed curve size. Over the years, they do revert back to the original curve size but they usually do not progress beyond it.

    The studies also show that most people under 40-50 degrees do not continue to progress when they are adults. And most of these surgeons state that fact, and you certainly all believe what the surgeons state! Why not believe them in this?

    I think it's a shame that you have these preformed opinions about bracing in your mind when you think you might be working on bracing studies. Perhaps you should exclude yourself from these pediatric bracing studies. It's called bias.

    This forum really just needs to be true to itself and state that it is a surgical forum for scoliosis. Obviously in your minds bracing doesn't work and never will and everyone else should just move along.

    Might I suggest http://www.scoliosis-support.org for parents bracing their kids and spinekids for kids being braced http://www.spinekids.com.
    Just because you believe something doesn't make it so. I suspect that you are the one with bias. Many professionals now agree that prior bracing studies are all flawed.

    Despite the fact that I now have come to understand that the studies are flawed, I would personally encourage my kid to try brace treatment if they fell within treatment protocol. Just because there is no proof that something works doesn't mean that it absolutely doesn't work.

    Before you continue to try to trash my reputation, you might want to do a little more investigation of my beliefs.

  11. #71
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    Quote Originally Posted by LindaRacine View Post
    Many professionals now agree that prior bracing studies are all flawed.
    It would be wonderful to see some definitive answers come from Braist, but no one ever seems to be mention the unbiased goal of the study: It's every bit as dedicated to showing bracing isn't effective.

    The quest is (again, that pesky word) evidence.
    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

  12. #72
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    Quote Originally Posted by Ballet Mom View Post
    Once again, it's thoracic curves that are cut off at this point. They got better results with lumbar curves, just like bracing gets better results with lumbar curves.
    Once again, it is NOT necessarily the case that a thoracic curve of 35 degrees would not qualify for VBS alone - it is right at the cutoff and could go either way.
    Last edited by mariaf; 12-08-2009 at 09:53 PM.
    mariaf305@yahoo.com
    Mom to David, age 17, braced June 2000 to March 2004
    Vertebral Body Stapling 3/10/04 for 40 degree curve (currently mid 20's)

    https://www.facebook.com/groups/ScoliosisTethering/

    http://pediatricspinefoundation.org/

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