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Thread: Dr. Hey deals with the fallout of parents lying about braces to kids

  1. #1
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    Dr. Hey deals with the fallout of parents lying about braces to kids

    http://drlloydhey.blogspot.com/2012/...girl-with.html

    I have dealt with some very unhappy patients in their late teens and twenties who ended up needing surgery, who were braced for several years, and thought that their commitment to wearing the brace meant that they would never have to have surgery. One 21 yo patient I remember, from New Jersey, had a complete meltdown in my clinic over at Duke when I told her that her curve had progressed to over 50 degrees. She screamed and pounded her fist and told me that it wasn't "fair", and that she was promised that she could choose the brace vs. choosing surgery. Now she was really upset that she needed both, and would have never worn the brace if she knew that surgery was possibly still on her future. I think the brace does help in some cases, but there is some "cost", psycho-social development and family dynamic "cost", that in some cases outweighs the possible benefit. The key thing is to empower the patient and family with the information so THEY make final choice, not me.
    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."

  2. #2
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    Poor girl!! I wouldve freaked out if I was the doctor.

    They should ban bracing and use the spinecore instead

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    Kat, spinecor IS a brace

    jess

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    Quote Originally Posted by jrnyc View Post
    Kat, spinecor IS a brace

    jess
    At least it's not made out of plastic

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    But (and the jury is out with regard to all braces in this respect) there's no proof Spinecor works.....
    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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    Quote Originally Posted by mariaf View Post
    But (and the jury is out with regard to all braces in this respect) there's no proof Spinecor works.....
    Pretty much. At least three groups tried to replicate the reported results coming out of
    Montreal and failed to do so. In reality it is likely many more than that tried to replicate the reported results and were not able to do so. There is a reason chiros and not surgeons are the main suppliers of spinecor in the US. It is worse than unproven... It has failed replication multiple times. There is a reason people don't believe the numbers coming out of Montreal.
    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. #7
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    I think in many cases, parents themselves were led to believe that bracing or surgery would totally "cure" their child of scoliosis. A few years ago, I mentioned to my mother that I was having problems with pain due to my scoliosis, she said "But you don't have scoliosis anymore!". I still have a 45/35 double curve and at the time was on the waiting list to have a second thoracoplasty to try to further correct my rib prominence. My parents felt that any further problems I had following my childhood surgeries had to be pretty minor, so much so that they've never taken them seriously and didn't bother to visit me in hospital when I had subsequent surgeries.

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    it may just be denial on my part, but i never think of scoli as a "disease"
    i think of it as a condition....
    i looked up the definition of "disease" in medical dictionary, and scoli fits the
    definition....but i just never think of myself as having a disease....

    in my Lyme travels with doctors, i found many who could not deal with patients who did not get better....whom they could not "make" better.....
    maybe it was just unacceptable to their egos...i don't know....
    i just know it was quite common...
    i wonder if the same "doctor syndrome" is true with scoliosis....
    when patients don't get better, the doctors can't handle it....
    especially if they treat their patients the way the medical "book"
    tells them to....

    jess

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    Quote Originally Posted by hdugger View Post
    Likewise, I suppose, we could consider the entire revision surgery section an example of the way parents lie to their children about surgery "curing" their scoliosis, when in fact in many, many case it's just the first in the series of surgeries.
    Hi hdugger,

    I've always been curious about this. Does anyone know the percentage of kids who have fusion surgeries as teenagers who go on to need additional surgery later on vs. those that don't.

    We know the cases who end up in the 'revision surgery section' represent the former group - but is there any way to know how those numbers compare to the latter? I'm guessing that the patients who fall into the catetory of not needing addiitonal surgery later in life probably aren't posting here.

    I've always wondered about this and whether there is any existing data. I would be very interested.
    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. #10
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    Quote Originally Posted by Pooka1 View Post
    Pretty much. At least three groups tried to replicate the reported results coming out of
    Montreal and failed to do so. In reality it is likely many more than that tried to replicate the reported results and were not able to do so. There is a reason chiros and not surgeons are the main suppliers of spinecor in the US. It is worse than unproven... It has failed replication multiple times. There is a reason people don't believe the numbers coming out of Montreal.
    The other big problem with Spinecor, in my view, is that most practitioners who prescribe it not only, as you say, are chiros - but they also recommend NO out-of-brace x-rays during treatment. I know that the doctor(s) in Montreal only do in-brace x-rays. In fact, a couple of years ago, I knew a mom who finally took her daughter for an out-of-brace x-ray on her own - and the curve had progressed to almost 50 degrees. The child ended up needing fusion. Now perhaps fusion was in the cards anyway, but my problem is that had the progression been found and addressed earlier, perhaps the child could have been a candidate for VBS (which was the mom's 'plan b' if the spinecor didn't work, but it was of course no longer an option at this point), or maybe the mom would have switched to another brace (which of course may have failed as well). Or, today the child might even have been a candidate for tethering, etc. But I can't help but wonder if that is precisely WHY no out-of-brace x-rays are taken (not to have patients walk away if they are unhappy with the results).

    Now I'm not accusing anyone of deliberately trying to hide progression, but with so much at stake, I think we have to look at all the possibillities. I also have a big problem with these folks taking only in-brace x-rays since every reputable pediatric orthopedic surgeon/specialist I have spoken with over the past decade believes that in order to get an accurate idea of what the true curve is, that the brace has to be removed for 24-48 hours.

    I personally have a hard time believing they are ALL wrong and the chiros are right. I'm just saying...........
    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. #11
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    Maria, don't the surgeons who invented spinecor also just do only in-brace radiographs? I think the chiros are just copying that. Also, even if it was all the chiros saying one thing as against one surgeon, the surgeon is automatically correct.

    Also the situation with surgery plus revision is irrelevant to the brace plus surgery situation for at least a few reasons. Kids don't have surgery to avoid revision surgery like they are braced to avoid surgery. Also, most parents don't have the first clue about revisions rates and probably are silent on the issue with their kids. That is completely not the case with parents and bracing as we can see in Dr. Hey's post and could have known just from human nature.

    Last, there is some data that the most frequent fusion, t curves, is mostly stable for decades. That seems to beat the hell out of the suspected brace failure rate. But again, that is irrelevant to this thread about parents lying about bracing.
    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. #12
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    Hi Maria...

    Last week, I got an email from a former UCSF OrthoSpine fellow, who is going to try to find patients who had fusions in the 60's and 70's, in order to find out what happens during menopause. Since he's in Canada, he'll hopefully be successful in finding a significant number. The few studies that have looked at this issue to date, had very few subjects.

    Regards,
    Linda
    Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Twain
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    Surgery 2/10/93 A/P fusion T4-L3
    Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation

  13. #13
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    Revision rates for surgery are a complete non sequitor to parents lying to kids about bracing. It is a classic "Look at the Wookie" diversion tactic to avoid the point at hand which is parents lie to kids about bracing. Given what is now known about bracing efficacy, it is not doing a kid any favor to lie to them about this. Hence we see the blowback that surgeons have to deal with.

    No amount of surgery revision stats will change the point of this thread or address it in any way whatsoever.
    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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    Surgical revision rates could be 100% and my point about parents lying about bracing would still stand. Now the revision rates for common fusions are very low even decades out but it does not matter anyway to the issue at hand. Please follow along.
    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."

  15. #15
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    Here is the difference in a nutshell... bracing is a choice whereas fusion generally is not. That is why revision statistics is irrelevant to parents lying about bracing.
    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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