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Thread: Waiting and Watching - Parents Beware

  1. #31
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    It is a tough personnel decision to brace or not. I would submit that very few parents and not all orthopedic doctors have the current background knowledge to make an informed decision. I know for sure that I didnít when confronted with the choice. I also know that as my understanding of the issues evolved, my views changed.

    • We know that bloodletting was the standard of care for many afflictions not too long ago
    • We know that electrical stimulation was often used for scoliosis not too long ago
    • We know that about 22% of braced kids go on to require surgery.
    • We donít know what percent of unbraced kids go on to require surgery.
    • We know that a myriad of factors are involved which are related to progression (the main ones being menarchal status and curve amplitude at ĎpresentationĒ)
    • We know that a parents love and concern for their child may lean them towards bracing curves that have a low likelihood of progression.
    • We know that wearing a brace can be a very difficult burden for a child.
    • We know that there is lots of money involved, both in promoting surgery and in promoting bracing.
    • We know the vast majority of practitioners, from conservative providers to surgeons are motivated not by money but by their desire to help children and often have strong opposing views.
    • We know there is still a lot to learn about scoliosis but parents are forced into making difficult decisions today with limited knowledge



    What else do we know?
    • Sharon loves horses and has a soft spot in her heart for elephants
    • Pamís son is serving our country (God bless him)
    • Christineís daughter has had phenomenal results with the SpineCor
    • Dingo is one smart dude who looks at issues with fresh eyes
    • Linda has her hands full here and
    • I am a concerned dad

  2. #32
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    Also, do you think the surgeons who say there is no good proof that bracing works simply haven't read this paper? Or don't understand it as well as you do? How do you explain the fact that many surgeons claim there is no good proof that bracing works? Are they high? Are they simply not as smart as you? What?

    What about my daughter's surgeon who recommended bracing? Is he not as smart as the doctor's who disagree?

    I don't get where all the hostility to the OP is coming from. Why this has become an argument over whether bracing works or not is unclear. She simply stated that waiting and watching can have negative effects when children are going through rapid growth and posted a blogger's experience to illustrate. Whether or not something was left out really isn't the point as we are not discussing advocating surgery for thirty-something degree curves. What I took note of was how unconcerned the blogger's doctor seemed to be about her dd's consistently progressing curve and how he did not lay out ALL of her options for her along the way. Waiting certainly didn't spare my daughter anything. Had we braced at diagnosis(30*), I don't believe her curve would have progressed 10* in 2 months. It COULD, I suppose, but not likely and I wouldn't have known either way. But because we didn't I know 100% that her curve progressed while waiting, and having that knowledge is not reassuring. Whether or not bracing will work for her cannot be found in ANY study because we are not dealing with something that is universal to all who have it. One may say "statistically this or that" but at the end of the day it is still an unknown as far as it relates to an individual's prognosis. I am giving her her only shot at not having to have surgery and if she still does after bracing, I don't consider the bracing unneccessary. I already know that she can progress quickly during growth and at Risser 0 I would consider it a success if it holds her curves period.

    So, Balletmom, I appreciate your opinion and agree that waiting, particularly during growing years for children with borderline bracing curves seems counterproductive if progression is more likely with growth and the goal is to begin bracing while bracing still has a chance to work.

    Hey CD! I didn't really post about my daughter's brace follow up, but I did include it in my signature. I have to say that as of right now, my dd is doing fine with her brace and it is not causing her any problems, physically or emotionally. You know I worried about it being a burden but so far so good. Now I reserve the right to change my opinion if it fails to hold her curves or causes her emotional distress !

    Michele
    DD/12 yo.
    diagnosed 1/9/09 at age 11-- 30*, 19 * S-curve- recommend wait/watch
    3/16/09- 32*, 23*
    5/14/09- 42*, 32* fitted for Boston Brace
    7/2/09- in brace x-ray- 16*,20*
    11/6/09- out of brace 24 hrs x-ray- 26* top curve, 18* bottom curve
    03/11/10- out of brace 24 hrs x-ray- 24* top curve, 16* bottom curve

  3. #33
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    I already know that she can progress quickly during growth and at Risser 0 I would consider it a success if it holds her curves period.
    I want to clarify that statement. I would consider it a success(not in the clinical definition of successful bracing, but for her specific needs) if it holds her curves until she is done growing regardless of if she were to begin progressing when bracing was completed and eventually needed surgery.
    Last edited by michele27; 07-15-2009 at 01:23 PM.
    DD/12 yo.
    diagnosed 1/9/09 at age 11-- 30*, 19 * S-curve- recommend wait/watch
    3/16/09- 32*, 23*
    5/14/09- 42*, 32* fitted for Boston Brace
    7/2/09- in brace x-ray- 16*,20*
    11/6/09- out of brace 24 hrs x-ray- 26* top curve, 18* bottom curve
    03/11/10- out of brace 24 hrs x-ray- 24* top curve, 16* bottom curve

  4. #34
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    Quote Originally Posted by michele27 View Post
    So, Balletmom, I appreciate your opinion and agree that waiting, particularly during growing years for children with borderline bracing curves seems counterproductive if progression is more likely with growth and the goal is to begin bracing while bracing still has a chance to work.
    I think this is very true. IF you are inclined to brace, the earlier the better. It will increase the number of kids unnecessarily braced, but improve the results of those for which bracing is beneficial (assuming that there are any for which it is beneficial - not saying this to open a can of worms, but it is just an "assumption" at this point IMO). This is one of the points made in the Danielson paper (not in the abstract though). Danielson says their results suggest ear;y school screening will have a positive affect on ultimate outcomes but acknowledges many will be unnecessarily braced. A philosophical dillemma.



    Quote Originally Posted by michele27 View Post
    Hey CD! I didn't really post about my daughter's brace follow up, but I did include it in my signature. I have to say that as of right now, my dd is doing fine with her brace and it is not causing her any problems, physically or emotionally. You know I worried about it being a burden but so far so good. Now I reserve the right to change my opinion if it fails to hold her curves or causes her emotional distress !
    Michele
    That is good news Michele and thanks for the update. The good inbrace correction sure is a positive sign. Hope she can continue to deal well with the brace. If it causes her emotional problems you still have the opton of considering a night brace which may be easier. We have our next appointment in the end of August and I have no idea what to expect.

  5. #35
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    Quote Originally Posted by michele27 View Post
    What about my daughter's surgeon who recommended bracing? Is he not as smart as the doctor's who disagree?
    Here's where we have to be extra careful so as not to inadvertently imply surgeons are idiots.

    I seriously doubt your surgeon will claim braces have been proven to work. That is NOT to say he doesn't feel and hope they might work in some cases despite not having good evidence.

    Do you see that distinction?

    I question that any experienced surgeon will claim the literature supports the efficacy of bracing. The literature is what it is and can't be majicked away.

    I don't get where all the hostility to the OP is coming from. Why this has become an argument over whether bracing works or not is unclear.
    The answer is that virtually every word certain people write starts from a ASSUMPTION that bracing works because they don't understand the state of the literature. When you start from that assumption you necessarily make counterfactual statements about whether bracing works and others are going to correct the record.

    She simply stated that waiting and watching can have negative effects when children are going through rapid growth and posted a blogger's experience to illustrate.
    See here is an example where it is obvious you are ASSUMING bracing is effective. The literature doesn't support this stance. And the blogger experience in this case proves nothing.

    Whether or not something was left out really isn't the point as we are not discussing advocating surgery for thirty-something degree curves.
    The fact it was mentioned was in an effort to show that the surgeon is not necessarily competent. But it is not rational that a surgeon will operate on a mid 30s* curve and the story is not believable as written. The real story is not what was written and the surgeon is most likely extremely competent.
    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."

  6. #36
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    Quote Originally Posted by concerned dad View Post
    It is a tough personnel decision to brace or not. I would submit that very few parents and not all orthopedic doctors have the current background knowledge to make an informed decision. I know for sure that I didnít when confronted with the choice. I also know that as my understanding of the issues evolved, my views changed.

    • We know that bloodletting was the standard of care for many afflictions not too long ago
    • We know that electrical stimulation was often used for scoliosis not too long ago
    • We know that about 22% of braced kids go on to require surgery.
    • We donít know what percent of unbraced kids go on to require surgery.
    • We know that a myriad of factors are involved which are related to progression (the main ones being menarchal status and curve amplitude at ĎpresentationĒ)
    • We know that a parents love and concern for their child may lean them towards bracing curves that have a low likelihood of progression.
    • We know that wearing a brace can be a very difficult burden for a child.
    • We know that there is lots of money involved, both in promoting surgery and in promoting bracing.
    • We know the vast majority of practitioners, from conservative providers to surgeons are motivated not by money but by their desire to help children and often have strong opposing views.
    • We know there is still a lot to learn about scoliosis but parents are forced into making difficult decisions today with limited knowledge



    What else do we know?
    • Sharon loves horses and has a soft spot in her heart for elephants
    • Pamís son is serving our country (God bless him)
    • Christineís daughter has had phenomenal results with the SpineCor
    • Dingo is one smart dude who looks at issues with fresh eyes
    • Linda has her hands full here and
    • I am a concerned dad
    Post of the month nomination
    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. #37
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    Here's where we have to be extra careful so as not to inadvertently imply surgeons are idiots.
    Are you a surgeon Pooka? You take such great umbrage at anything you seem to see as a slight to them. Curious.

    The fact it was mentioned was in an effort to show that the surgeon is not necessarily competent. But it is not rational that a surgeon will operate on a mid 30s* curve and the story is not believable as written. The real story is not what was written and the surgeon is most likely extremely competent.
    This leads to incorrect thinking. The fact that it was mentioned was not because I am trying to say a surgeon is incompetent. I am trying to let other parents who will not know enough when their child is diagnosed to go to another surgeon if they have not been prescribed a brace, if they are interested in bracing. Because time is of the essence. By the time they have it figured out, it will likely be too late for their kid. I am giving a heads up that there are surgeons out there who do not believe in bracing, and you may need to take your business elsewhere, or even inquire with the doctor's office before you go, to see if they brace patients. If those parents are interested in bracing. If not, no big deal, stay with the non-bracing surgeon.

    But it is not rational that a surgeon will operate on a mid 30s* curve and the story is not believable as written.
    You're wrong. I posted a link to a surgeon that did a fusion on a patient with a 36 degree curve. Right there in North Carolina. Very close for you to take your daughter to. I suspect he is a very competent surgeon.

    How do you explain my daughter's success with bracing anyway? The curve just magically stopped right when she got the brace even though it was curving and rotating in front of my eyes?
    Last edited by Ballet Mom; 07-15-2009 at 10:39 PM.

  8. #38
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    Pooka,

    I searched on the text strings for that blog entry and can't find the source. I am wondering if it is a real blog entry on some blog. I think it would find it but I'm not sure.
    I checked also before I posted to make sure people couldn't find it. I figured people would be checking and I wanted to make sure they wouldn't find the blog. I'm not here to discredit anyone. I probably know the answer as to why it can't be found, but you're the scientist, and as we all know, they are the only ones who know anything, so I'll let you figure it out.

  9. #39
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    Are you as sure you understand this study and how well supported their conclusions are as you are about how patients are recruited into clinical trials?
    I'm sorry Pooka that you are unable to understand what I was saying about the recruiting of patients in the Braist study. I don't know what to do about that. CD got it.

  10. #40
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    See here is an example where it is obvious you are ASSUMING bracing is effective. The literature doesn't support this stance.
    I do assume bracing works while it is working. If dd went in tomorrow and had progressed, I'd assume it wasn't working. The literature doesn't sway me in either direction but I do read a lot of the studies referenced on this site and others because it is my duty as her parent to be informed. I make my decisions based on the results she gets as we go along. Even if they could prove bracing worked, there is an exception to every rule and I would still have the same opinion I stated above.

    I understand that bracing cannot be proven because if one braces and doesn't progress, then one could say it was the bracing that made the difference or argue that the curve would have stabilized regardless of bracing. However when one braces and progresses anyway, then it is a fact that bracing did not work. That, to me, does not negate bracing across the board. It just means they can only prove when it doesn't work. The only thing I can say with 100% certainty is that my daughter progressed significantly in a short time while we waited and watched, so no, I'm not a big fan of that protocol. I am also not fond of bracing, but will give it a shot in hopes it will prevent or at least delay surgery for my daughter because I'm not fond of hospitals or surgery either!
    Last edited by michele27; 07-15-2009 at 06:47 PM.
    DD/12 yo.
    diagnosed 1/9/09 at age 11-- 30*, 19 * S-curve- recommend wait/watch
    3/16/09- 32*, 23*
    5/14/09- 42*, 32* fitted for Boston Brace
    7/2/09- in brace x-ray- 16*,20*
    11/6/09- out of brace 24 hrs x-ray- 26* top curve, 18* bottom curve
    03/11/10- out of brace 24 hrs x-ray- 24* top curve, 16* bottom curve

  11. #41
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    Quote Originally Posted by michele27 View Post
    I understand that bracing cannot be proven because if one braces and doesn't progress, then one could say it was the bracing that made the difference or argue that the curve would have stabilized regardless of bracing. However when one braces and progresses anyway, then it is a fact that bracing did not work. That, to me, does not negate bracing across the board. It just means they can only prove when it doesn't work. The only thing I can say with 100% certainty is that my daughter progressed significantly in a short time while we waited and watched, so no, I'm not a big fan of that protocol. I am also not fond of bracing, but will give it a shot in hopes it will prevent or at least delay surgery for my daughter because I'm not fond of hospitals or surgery either!
    This is very well reasoned and very clearly written. I bolded a very key issue that you have identified but would expand it to say that some failures might be due to noncompliance. Bracing is very hard to study. I hope folks read your post because it captures the key points in a minimal amount of words.
    Last edited by Pooka1; 07-15-2009 at 07:38 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."

  12. #42
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    I agree, great post.

  13. #43
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    Pooka: This is very well reasoned and very clearly written.
    Ballet Mom: I agree, great post.

    Add me to the list of fans of that paragraph.

    Nice job expressing the common ground we share Michele.

  14. #44
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    Just to add a point

    I understand that bracing cannot be proven because if one braces and doesn't progress, then one could say it was the bracing that made the difference or argue that the curve would have stabilized regardless of bracing.
    This sort of happened to my daughter except the other way around.

    She went from 38 down to 34 in a few months

    She only braced for a short time (~6 weeks) with essentially no inbrace correction. So I dont attribute the reduction to the brace. BUT, had she been braced and had I not noticed the ridiculous claim about her inbrace correction, the reduction would have been chalked up to the brace. I DO attribute it to measurement error but if the next reading is also low, well, either divine intervention or spontaneuos correction (call it what you like everyone - the results are the same).

    And, if it goes up, well, I'll have to live with the guilt of wondering if a different brace would have helped.

    Not an easy clear cut decision, but the 3 of us made it weighing the information we had. As Ballet Mom points out, the FREEDOM to make the decision is important.

  15. #45
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    Michele27, I agree 100% with you. I braced my dd even though she was stable and not progressing because I knew the "risk of progression" was too great to continue with the wait and watch protocol.

    As to statistics those are just numbers and are not necessarily the whole story. When my dd was born, I had a tubal ligation, cut-tied-burned, 99% chance of never getting pregnant again. Guess what? 4 years later I was pregnant Just because the odds are in your favor, doesn't mean it is a done deal. When the odds are leaning towards progression, bracing is at least worth a shot, even if it only delays fusion.
    Emily's mom-11 1/2 years old
    28 degree scoliosis 9/04
    Chiari Malformation/SM decompressed 11/04
    17-24 degrees 11/04-6/07
    Wearing Spinecor Brace since June 07
    3/31/10- 29 degrees oob
    11/18/09 17 degrees in brace

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