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Thread: Response: How one surgeon discusses BrAIST

  1. #1
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    Response: How one surgeon discusses BrAIST

    [Oh good heavens - to infinity and beyond - *four* posts disposed of this round when the original discussion disappeared and, then, reappeared without my four responses. I suppose one must start one's own thread in these cases, or find ones responses spirited off into the ether. Fortunately, because of computer issue, I keep copies before I hit submit. Reposting all four responses.]

    Pooka: "Here's a data point..."

    Noted. Again. Yes, the short term study shows short term results. One would look at long term studies for long term results.

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    And here's another data point:

    "“The BrAIST study provides the level of evidence physicians can depend upon to determine optimal care for their patients” states Steven D. Glassman, MD, an orthopedic spine surgeon and President of the Scoliosis Research Society (SRS)."

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    And another, from the study's author:

    "Dr. Weinstein agreed. “Anyone who treats children with scoliosis knows that they don’t like wearing the brace,” he said. “Having compelling evidence that braces do work and that the longer they’re worn, the greater the chance of avoiding surgery is pretty persuasive to youngsters who are facing a difficult situation in their lives.”"

    Again, is there a reason you're starting a new discussion [note: which requires *two* new discussions, because of the "posts in the ether"] each time you want to comment on the BrAIST study? That study already has its own discussion.

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    And another

    "Such a study raised moral challenges, too. “Ethically, you have to accept that some patients will be randomized to not using a brace, and your presumption is they will end up needing surgery,” said Dr. John T. Smith, a professor in the orthopedics department at the University of Utah."

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    My experience with every comment I've seen from an orthopedic surgeon - whether on bracing or another scoliosis treatment option - is that they are very measured. It is hard to work in a field with no great treatment options. I would think that would take a toll on anyone. So, yes, they say ALL these things. They're happy to be able to tell parents that braces are effective in keeping their kids off the operating table, and they also recognize that bracing is tough. Pediatric orthopedic surgeons understand that the kids they successfully treat - with surgery as well as braces - may go on to have problems. You simply can't ever promise these kids that everything will work out fine for them.

    If *any* child - braced, fused, or untreated - is being given a lifelong guarantee that they'll be free from pain or surgery, they are being done a great disservice. One only has to glance at the adult patient section to know that such a guarantee is not possible.

  6. #6
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    Quote Originally Posted by hdugger View Post
    “Having compelling evidence that braces do work and that the longer they’re worn, the greater the chance of avoiding surgery is pretty persuasive to youngsters who are facing a difficult situation in their lives.”
    It might be pretty persuasive to parents, but my experience is that a good portion of 'youngsters' would not be moved. This is just my personal experience raising my kids. I have found that for an awful lot of teens in particular, there is little that has been invented or exists in the world that would equal the horror (in their view) of wearing a brace around their friends or for that matter, being viewed as different from their peers in any way.

    Maybe other kids are different, but in my house this is how it is and always has been. My daughter once threatened to remove the braces on her teeth with a pliers, if they weren't taken off before she started high school. To state the obvious, braces on one's teeth are far more common among teens than a back brace, but it makes them feel different just the same, during a time in their lives that is already quite challenging.

    I also have heard from more than a few parents that when their kids were told that diligent brace wearing would decrease their chances for surgery, they said they didn't care, that they would rather have surgery than "wear that thing".

    Again, I am not saying that I agree or disagree with these views, nor am I saying anything for or against bracing or surgery, but rather simply sharing what my experience in 25+ years of parenting has been with teenagers when it comes to this sort of thing.
    Last edited by mariaf; 01-13-2014 at 10:05 AM.
    mariaf305@yahoo.com
    Mom to David, age 15, braced June 2000 to March 2004
    Vertebral Body Stapling 3/10/04 for 40 degree curve (currently holding around 26 degrees)
    Under care of Dr. Randal Betz since 2004

    Also mom to Nicole (22) and Danny (25)

    Link to VBS Website: www.vertebralstapling.com

    Janet Cerrone, PA to Dr. Betz janetcerrone@spineandscoliosis.com or (609) 912-1500

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    And then once you share that the long term is unknown and that bracing may only delay surgery, all bets are off.

    I suspect parents do not always share the full picture and hence we see meltdowns in surgeon's offices among young adults who felt they were lied to about bracewear avoiding surgery for life.

    Having been on the receiving end of those meltdowns, who can blame Dr. Hey for how he is very cautious in representing the results of BrAIST to kids and their parents. Here is what he wrote in a recent blog entry...

    http://drlloydhey.blogspot.com/2013/...-from-hey.html

    Today in clinic we were busy as usual, but had plenty of time to spend with each of our guests, including guests from Columbia, SC, Virginia Beach, VA and West Virginia. I actually spent over an hour with the mom and dad of one of our scoliosis patients who has a thoracolumbar curve of 34 degrees, which has been progressive. We had a really good long talk about the possible long-term affect of this particular curve type, especially because this patient also has about a 5 cm trunk shift to the side due to the scoliosis. The dad was not there for the initial visit, and he had lots of questions, and both parents were so glad for this time to learn more before their daughter comes back for her next follow-up xray in a few months. We talked through the choice for scoliosis bracing again with the pro's and con's, and I shared with them the latest clinical research data including Weinstein's recent randomized control trial (RCT), which showed some effect from bracing in some patients at least in the short-term. However, longer term follow-up studies are needed and there is still a "cost" to bracing in terms of the potential psychological/emotional and social effects of wearing a brace for 18+ hours per day for possibly several years. It is sometimes a good idea to get a second opinion when considering bracing, and to take the whole patient and family situation into account.
    Compare and contrast this with the noise coming from the lay folks around here.

    Expert, experienced comment... more than just a good idea when approaching the literature, especially "landmark" publications.
    Last edited by Pooka1; 01-13-2014 at 10:05 AM.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

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    Quote Originally Posted by hdugger View Post
    "Dr. Weinstein agreed. “Anyone who treats children with scoliosis knows that they don’t like wearing the brace,” he said. “Having compelling evidence that braces do work and that the longer they’re worn, the greater the chance of avoiding surgery is pretty persuasive to youngsters who are facing a difficult situation in their lives.”"
    Note how the point of avoiding surgery "TO THE POINT OF MATURITY" as opposed to "FOR LIFE" is elided. This is how kids have ground to stand on if they claim they were lied to. A lie by omission if stated to a child.

    Dr. Weinstien is talking to colleagues who understand this point so HE isn't lying or even lying by omission. But repeating that on a forum without qualification IS lying by omission because not everyone reading that will understand the distinction.

    Compare this statement with how Dr. Hey speaks to patients and their families. Very different. There is a reason for that.
    Last edited by Pooka1; 01-13-2014 at 10:07 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. #9
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    Quote Originally Posted by Pooka1 View Post

    Expert, experienced comment... more than just a good idea when approaching the literature, especially "landmark" publications.
    It would be would to know about that kind of comments coming from researchers, mainly in a serious study as the Braist study seems to be and of course not having personal interests in the topic as they must to declare they haven't.. of course Dr. Hey dont fulfill those requirements.

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    Quote Originally Posted by flerc View Post
    It would be would to know about that kind of comments coming from researchers, mainly in a serious study as the Braist study seems to be and of course not having personal interests in the topic as they must to declare they haven't.. of course Dr. Hey dont fulfill those requirements.
    Do you think BrAIST is a "landmark" study?
    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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    Quote Originally Posted by Pooka1 View Post
    Do you think BrAIST is a "landmark" study?
    I think is a serious study confirming something known but probably never shown in this way before.

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    Quote Originally Posted by Pooka1 View Post
    Note how the point of avoiding surgery "TO THE POINT OF MATURITY" as opposed to "FOR LIFE" is elided. This is how kids have ground to stand on if they claim they were lied to. A lie by omission if stated to a child.
    Dr. Hey is not doing a lie by omission when he recommends surgery instead of braces? Does he talk about all the negative points (confirmed or not) of surgery?

  13. #13
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    Quote Originally Posted by flerc View Post
    I think is a serious study confirming something known but probably never shown in this way before.
    Okay good. Now what percentage of such studies are able to be successfully repeated by other researchers?
    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. #14
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    Maria - agreed, these things are tough on teens. A couple of the quotes I included go to that point.

    My son wore braces on his teeth in college (he homeschooled - so no highschool for him). I'm sure he would rather not have, but he chose to because he wanted to avoid having problems with his teeth down the road. I've seen lots of teens on scoliosis boards making the same choice - it's hard, but they do it because they want to preserve their back down the road.

    These kids (and their parents) have a choice to make. Given the growing pile of evidence of bracing's efficacy, what do you do with a 25 or 30 degree curve? Do you choose to take the hit during your high school years in order to protect your back, as my son did with his braces and his teeth? Or do you take the (apparently) 50/50 chance that you end up on the operating table or have your curve advance 10 or 20 degrees as a teen, and then start the clock on all of the degenerative changes that go along with having a large or fused curve?

    Looking through the responses from surgeons (I ran through several pages on Google), they seem to really, really want to keep these kids off the operating table. I know they're not living with these teens, and I know that they're less privvy to the emotional cost of a brace, but the response I read all seemed to focus on that piece - how do I avoid putting this child through major surgery.

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    You're sort of putting things together that ought not be put together and separating things that ought not to be separated.

    Bracing for teens is aimed at two things: keep curves as small as possible (so that they won't progress in adulthood), and keep kids off the operating table while they're still growing. When one talks about bracing's effectiveness, that's what they're talking about.

    Likewise, a "successful" surgery is one which (at least) they are able to surgically fuse the spine at the points where it was curving.

    Success on *both* of these treatments is measured in a very narrow window. Bracing's window of effectiveness is measured at maturity. Surgery's window of success is even more narrow - basically as soon as they walk out of the hospital, it's marked in the "success" column.

    You can argue how these things ought to be measured but, currently, that is how they are measured.

    And then, you sort of fall of the rails, IMO. If a surgeon is *lying* to a child if they end up needing surgery 10, 20, 30 years down the road after braces, then they're equally *lying* to a child if their fusion fails to fuse and they end up back in surgery a year later. Or if they develop severe degeneration below their fusion and require further surgery. Or if they develop PJK above the fusion and need to have it extended upwards.

    So, either surgeons are lying to children in *all* of those cases (which I strongly disagree with) or they are simply using the commonly understood window of success.

    There is no guarantee for these kids that they'll have a painfree and surgeryfree adulthood regardless of what treatment they choose or don't choose. Because of that, because there's no way of knowing for an individual kid how they'll look 10, 20, 30 years down the road given a specific treatment, surgeons don't deal in that window. What they do is what they can do - looking at this specific kid, what can I do right now to make their entire life as good as possible given the current state of knowledge.

    Unless you're arguing that surgeons *aren't* doing that - that they're making stupid, ill-informed choices - I really don't understand what your argument is.

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