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Thread: The Bracing Debate

  1. #16
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    Quote Originally Posted by LindaRacine View Post
    I don't think that's correct. I don't know for certain, but I asked maybe 8-10 surgeons at the last SRS meeting, about whether they were still bracing. These weren't surgeons from Podunk, they were pretty much the movers and shakers of the industry. Their answers were pretty much all along the line of "yes, we haven't proved that bracing is effective, but we also haven't proved it isn't."

    Linda, I wasn't specifically arguing against bracing (at least not in this instance) ... only that the emotional impact of bracing isn't something to be minimized. That's the way I perceived the original post ... and yes, I'm in the group that's probably what can be grossly understated as "a little touchy" in that regard.

    You clipped out the part of my post that referred to Milwaukees and Bostons with superstructures: I'm not sure that I understand what you meant by "... don't think that's correct", and/or I was what I was saying was clear. I didn't mean they weren't bracing, period - only that those two particular (Milwaukees and BwSS) aren't commonly used these days.

    They are - or were as recently as 3-4 years ago (if that), however - still used in some circumstances. A friend's daughter was stapled for a high thoracic curve (up to T2, I think). Prior to that, I'm almost sure she was wearing a Milwaukee because of the extremely high apex.

    Mariaf, am I remembering incorrectly, or didn't Lorena have one?

    Pam
    Last edited by txmarinemom; 02-07-2010 at 08:35 AM. Reason: I meant to say I *wasn't* arguing bracing in this case ... OOPS!
    Fusion is NOT the end of the world.
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  2. #17
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    Quote Originally Posted by txmarinemom View Post
    I'd NEVER put my child in a Milwaukee.

    There are really only a few circumstances where I'd even place my kid in a Boston ... and it would *still* kill me to buckle the straps. Regards, Pam


    When my daughter was first diagnosed, I did like most moms do and I researched and educated myself (and Jamie) as much as possible. We realized that Scoliosis wasn't the end of the world. We knew that together, we could deal wtih Scoliosis.......as long as they didn't prescribe a Milwaukee brace. To both of us, that was, at the time, our worst fear. At 12 y.o. there was NO WAY Jamie was going to wear that thing!

    So we go for her first appointment with the orthopedic surgeon, he x-rays her entire back and tells us that not only does Jamie have a high thoracic Scoliosis curve, but she also has Kyphosis. Never heard that word before, so he explained it to us and showed it to us on the x-ray. He then proceeds to tell us that he'd like to put Jamie in a brace. Okay, we can handle this because we knew going into the appointment that this is what was most likely to happen. Then he tells us he wants her in a modified Milwaukee brace! We lost it! I don't know how either of us kept the tears and emotions inside, but we did.

    We took the script and went downstairs to make the appointment for her fitting.....and coudln't do it. We left. We cried, we fought and finally my husband and I told Jamie she had to try the brace. Her doctor said this was the best option for her and we had agreed beforehand that we'd try what the doctor recommended.

    Fast forward......we got the brace. She refused to wear it to school (8th grade at the time). She'd wear it a few hours at home. We fought, we cried, we bribed her to wear it.....to no avail. Went back to the doctor two weeks later for repeated x-rays to see if the brace was working. Had to fight with the nurse when she wanted to do x-rays when I knew Jamie hadn't worn the brace long enough to make a difference, so why put her through x-rays? Saw the doctor and he basically said that we didn't have any other options beside surgery in the future.

    Went for a second opinion and she said the Boston brace woudl be best for Jamie. I asked, what about the Kyphosis? How will that be addressed? She said we could add a piece to the front of the brace, to address that and was given a script for a Boston brace with an added section to the front. Long story, short, Jamie woudl not wear this brace either. Why? Was it because she had already experienced the Milwaukee brace? Was it because the front piece of the Boston brace pushed out and showed through her clothing? I don't know.

    All I know is "I buckled the straps." I decided after a few tries at getting her to wear her brace, that it wasn't worth it. I explained to Jamie again that by not wearing the brace, it most likely would mean surgery (her Scoliosis was 36* at the time of diagnosis and stilll progressing) and she was okay with that. I proceeded to take Jamie to three other doctors until we found the perfect match for us.

    One year and two months from her original diagnosis, she had surgery. Her main Scoliosis curve went from 36* to 46* and was still progressing even though she was done growing long before this. Do we regret having surgery? No. Neither of us have ever regretted that decision. Do I regret trying the braces? Not really. At the time, I was pretty uneducated and trusted what the doctor said. Am I glad that I was strong enough to trust my instincts and keep looking for another doctor? Absolutely! Would I ever put my other daughter in a hard brace for Scoliosis? NO.

    Sorry this is so long. For those of you who've read this far, thanks.

    Mary Lou
    Last edited by Snoopy; 02-07-2010 at 07:43 AM.
    Mom to Jamie age 21-diagnosed at age 12-spinal fusion 12/7/2004-fused from T3-L2; and Tracy age 19, mild Scoliosis-diagnosed at age 18.

  3. #18
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    Quote Originally Posted by LindaRacine View Post
    This debate may be meaningless in the not-too-distant future, as we're moving rapidly toward a society where only proven effective treatments are paid for by insurance companies (or the government).
    And that, in itself, is REALLY scary. The biggest question is what treatment(s) will be deemed effective, by whom, and by what methods?

    Ack.

    Even scarier is if surgery (VBS and/or fusion) IS included, who will "they" deem capable of performing it?

    Double ACK.
    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. #19
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    Quote Originally Posted by LindaRacine View Post
    Hi...

    I don't think that's correct. I don't know for certain, but I asked maybe 8-10 surgeons at the last SRS meeting, about whether they were still bracing. These weren't surgeons from Podunk, they were pretty much the movers and shakers of the industry. Their answers were pretty much all along the line of "yes, we haven't proved that bracing is effective, but we also haven't proved it isn't."
    You don't need to be an orthopedic surgeon to conclude this. Everyone is stuck with the same literature, such that it is.

    For AIS (not JIS or IIS), before the pedicle screw era for all curves and before the Harrington rod era for T curves, it might have been worth a try with hard braces. As the surgeons said, nobody showed it never works. But now, having booted myself up on the bracing literature, I would never consider a 23 hour/day brace, hard or soft for a kid of mine.

    Life is short. And JIS kids need to go to the head of the VBS line in my opinion... they have no other choice.
    Last edited by Pooka1; 04-05-2010 at 05:29 PM.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

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  5. #20
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    I think that Boston braces are still the "gold standard" for most curves.

    Sharon, it's interesting that you're on the VBS bandwagon, considering they don't have any RCTs. (I'm definitely not anti-VBS. I'm just pointing out that that method will have to go through the same trials that bracing is having to go through, before the mainstream surgeons hop on board.)

    --Linda

  6. #21
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    Quote Originally Posted by LindaRacine View Post
    Sharon, it's interesting that you're on the VBS bandwagon, considering they don't have any RCTs. (I'm definitely not anti-VBS. I'm just pointing out that that method will have to go through the same trials that bracing is having to go through, before the mainstream surgeons hop on board.)
    Well it is my understanding that VBS is leaving the "experimental surgery" category and getting into whatever category the "gold standard of surgery is (posterior spinal fusion). That's mainly why I said that.

    Also, based on that recent talk at the POSNA meeting, it seems like it is at least safe; The question did arise as to whether the results are better than watching waiting. That is, it tends to work better on L curves which have a lower progression potential than T curves. Things like that.

    Last, VBS surgery is much less of a burden than bracing. So considering everything, it is a better deal.
    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."

  7. #22
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    Quote Originally Posted by Pooka1 View Post
    Well it is my understanding that VBS is leaving the "experimental surgery" category and getting into whatever category the "gold standard of surgery is (posterior spinal fusion). That's mainly why I said that.

    Also, based on that recent talk at the POSNA meeting, it seems like it is at least safe; The question did arise as to whether the results are better than watching waiting. That is, it tends to work better on L curves which have a lower progression potential than T curves. Things like that.

    Last, VBS surgery is much less of a burden than bracing. So considering everything, it is a better deal.
    Hi...

    I'm really surprised that you don't see that arguing for VBS is the same as someone else arguing for bracing. Neither has proved any effectiveness using your own stringent standards. Why aren't you giving parents like Maria the same scrutiny as you're giving those parents who have opted for bracing?

    Again, I'm not at all anti-VBS. If my child was a candidate, I'd probably chose it over bracing. However, you should admit there's zero proof that the VBS treated kids won't go on to have their curves progress later in life. Yes, VBS feels less intrusive, but it comes with a lot more risks than bracing. I don't think you can die, get an infection, or become paralyzed from bracing. ;-)

    You can't have it both ways.

    --Linda

  8. #23
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    Quote Originally Posted by LindaRacine View Post
    Hi...

    I'm really surprised that you don't see that arguing for VBS is the same as someone else arguing for bracing. Neither has proved any effectiveness using your own stringent standards. Why aren't you giving parents like Maria the same scrutiny as you're giving those parents who have opted for bracing?
    No I think there is more definitive data (yes it "worked" which includes cases that would not have progressed versus no it didn't work) for VBS than for bracing. By far. And that is amazing considering teh length of time each has been under study. Also, VBS has no worse a record than bracing and is far less burdensome.

    Again, I'm not at all anti-VBS. If my child was a candidate, I'd probably chose it over bracing. However, you should admit there's zero proof that the VBS treated kids won't go on to have their curves progress later in life. Yes, VBS feels less intrusive, but it comes with a lot more risks than bracing. I don't think you can die, get an infection, or become paralyzed from bracing. ;-)
    While it is true that there are few kids out of the growth period who were stapled, if most of those had gone on to fusion we probably would have heard it by now. Thus I think they avoid fusion at least to this point.

    I think the risk situation surrounding VBS is small enough such that it still is better overall than wearing a brace for a few years. Just my opinion.

    You can't have it both ways.
    Not trying to. The situation with VBS, as a surgery with a defined outcome in something close to real time is distinguishable (and superior) to that for bracing as far as I can tell. Surgery will always have that advantage over things like PT and bracing. I may be missing some info though. In fact I certainly don't have all the relevant info.
    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 LindaRacine View Post
    I think that Boston braces are still the "gold standard" for most curves.

    Sharon, it's interesting that you're on the VBS bandwagon, considering they don't have any RCTs. (I'm definitely not anti-VBS. I'm just pointing out that that method will have to go through the same trials that bracing is having to go through, before the mainstream surgeons hop on board.)

    --Linda
    Hi Linda,

    I just wanted to share the information that a lot of the top names in the field ARE on board - it may not be common knowledge because some have come on board in the past year or two. But in addition to Dr. Betz and the team at Shriners Philadelphia, these include Drs. Luhmann, Sturm, Oswald, Skaggs, Vitale, Hresko, Hanson, Diab - and hospitals like Childrens Hospital of Boston, Childrens Hospital of Los Angeles, etc.

    I even spoke to one mom who took her child to Dr. Boachie and he said that since juvenile scoliosis cases don't make up a large part of his practice, he wasn't performing VBS but he recommended it as a good option for her daughter.
    Last edited by mariaf; 02-07-2010 at 04:34 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/

  10. #25
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    Quote Originally Posted by LindaRacine View Post
    Yes, VBS feels less intrusive, but it comes with a lot more risks than bracing. I don't think you can die, get an infection, or become paralyzed from bracing.
    I realize the point you are trying to make about the risks of surgery vs. bracing, but I honestly feel that mentioning paralysis and death are a bit extreme - except to the extent that I guess one could say they could happen with any surgical procedure, no matter how minor - but how extremely remote is this possibility??

    Luckily, with regard to VBS, there haven't been any serious complications that I'm aware of from among the many parents I've had contact with (probably a large percentage of the VBS patients out there), and from talking to some of the doctors performing it - and it is considered, as surgeries go, quite safe.

    It's not that any of us WANT our kids to undergo any surgery, but like Sharon said sometimes there's no choice (if one is trying to avoid fusion, a more invasive surgery with arguably greater risks). I realize there is no guarantee that VBS means that a patient will avoid fusion - just like there's no guarantee that bracing will cause one to avoid fusion - but VBS is an "alternative to bracing" that many parents and a lot of the top orthos in the country feel is a good option for certain candidates.
    Last edited by mariaf; 02-07-2010 at 04:36 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/

  11. #26
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    Quote Originally Posted by txmarinemom View Post
    They are - or were as recently as 3-4 years ago (if that), however - still used in some circumstances. A friend's daughter was stapled for a high thoracic curve (up to T2, I think). Prior to that, I'm almost sure she was wearing a Milwaukee because of the extremely high apex.

    Mariaf, am I remembering incorrectly, or didn't Lorena have one?

    Pam
    I recall that Lorena did have a Milwaukee brace, although it may have been a modified Milwaukee - I'm not sure.
    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/

  12. #27
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    Hi Maria...

    You're missing my point. I am not at all against VBS. I specifically said I'd chose it for my own child if it was appropriate. My point is that VBS is actually less proven than bracing, and no one should be dismissing one treatment (bracing) with the argument of no RCTs, unless they apply the same stringent measurement of success to the other treatment (VBS).

    Just because doctors are jumping on board is not proof that a treatment is successful. Those same doctors are still prescribing braces for some patients, and I think we have all agreed that bracing has not yet been conclusively proven to be effective.

    --Linda

  13. #28
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    Quote Originally Posted by LindaRacine View Post
    Hi Maria...

    My point is that VBS is actually less proven than bracing, and no one should be dismissing one treatment (bracing) with the argument of no RCTs, unless they apply the same stringent measurement of success to the other treatment (VBS).
    Disagree.

    Just because doctors are jumping on board is not proof that a treatment is successful.
    Agree.

    Those same doctors are still prescribing braces for some patients, and I think we have all agreed that bracing has not yet been conclusively proven to be effective.
    VBS is easier to study than bracing.
    Last edited by Pooka1; 02-07-2010 at 08:58 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."

  14. #29
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    Quote Originally Posted by LindaRacine View Post
    I'm just pointing out that that method will have to go through the same trials that bracing is having to go through, before the mainstream surgeons hop on board.)

    --Linda
    Hi Linda,

    I didn't miss your point - and I hope you didn't interpret the tone of my post the wrong way - I do realize you aren't necessarily anti-VBS - I just wanted to share some information about the mainstream surgeons who HAVE already hopped on board. We keep a list on the VBS site, but I figured a lot of folks might not know that some of these mainstream surgeons are offering this option.

    A lot of other surgeons don't perform VBS because it is still not "routinely" covered by insurance - however, I am happy to report that the reason several doctors outside of Shriners (Vitale, Oswald, etc.) have been able to perform VBS is that while many insurance companies will initially deny the claim, they have reversed that decision upon appeal from the patient's family and the surgeon, and paid for the procedure - if that were not the case, these doctors would not be able to perform the surgery.

    Believe me, I realize that the jury is still out on whether or not VBS will guarantee that these kids can avoid fusion, but I honestly feel that not only is it, as Sharon said, less of a burden than years of bracing, but I feel it at least has the potential to permanently reduce the curve, unlike bracing. While many VBS patients have not reached skeletal maturity, several have either done so or at least gotten past their major growth spurt without requiring fusion.

    I think we are all on the same page in hoping the alternatives like VBS are successful so that JIS kids, in particular, will have a brighter outlook
    Last edited by mariaf; 02-07-2010 at 09:06 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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