Page 2 of 3 FirstFirst 123 LastLast
Results 16 to 30 of 39

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

  1. #16
    Join Date
    Aug 2006
    Posts
    369
    I never lied to my daughter about bracing. I told her that it may or may not work. I told her it would be expensive and we would have to sacrifice alot. I told her there is still a strong possibility that she will still need fusion. She wanted to a try.

    So far we are ahead of the game
    She is 12 yrs old - 8/2012 - 2 weeks out of spinecor out of brace 18* now in a TSLO night time only to get through her growth spurt. I understand that js & ais are 2 different monsters. To say that all parents lie to their kids about bracing is wrong.
    from CT, USA
    6 year old daughter diagnosed 7/06 33* T9

    Spinecor 8/06 - 8/2012
    8/06 11* 3/07 5*-8/07 8*-2/08 3*
    10/08 1* 4/09 Still holding @ 1*
    10/09 11* OOB 4/10 Negative 6*
    10/2011 Neg.11* IB 11yrs old 0 rotation
    4/2012 12* OOB 0 rotation
    8/2012 18* OOB for 2 weeks. TSLO night time
    2/2013 8* OOB 3 days TSLO nightime
    3/2014 8* Out of Brace permanently

  2. #17
    Join Date
    Jan 2008
    Location
    NC
    Posts
    9,317
    I of course never said all parents. Clearly parents are not aware of the evidence case for bracing ais and don't realize they are lying in some cases. Advocating for your child entails understanding as much as possible. Dr. Hey's testimonial reveals that folks might need more effort in this regard so as to not let their child be completely blindsided and bitter. And did we really even need that post from Dr. Hey to suspect this?

    Also the bracing situation with jis is different as you said.
    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."

  3. #18
    Join Date
    Aug 2006
    Posts
    369
    Sharon
    I don't think that it is right that you bad mouth parents to their kids. It is a hard enough task to deal w/ childhood issues w/out you saying we are liars. You do not know what is best for everyone.
    from CT, USA
    6 year old daughter diagnosed 7/06 33* T9

    Spinecor 8/06 - 8/2012
    8/06 11* 3/07 5*-8/07 8*-2/08 3*
    10/08 1* 4/09 Still holding @ 1*
    10/09 11* OOB 4/10 Negative 6*
    10/2011 Neg.11* IB 11yrs old 0 rotation
    4/2012 12* OOB 0 rotation
    8/2012 18* OOB for 2 weeks. TSLO night time
    2/2013 8* OOB 3 days TSLO nightime
    3/2014 8* Out of Brace permanently

  4. #19
    Join Date
    Jan 2008
    Location
    NC
    Posts
    9,317
    Quote Originally Posted by christine2 View Post
    Sharon
    I don't think that it is right that you bad mouth parents to their kids. It is a hard enough task to deal w/ childhood issues w/out you saying we are liars. You do not know what is best for everyone.
    I never claimed to know what is best for everyone. That is the second time you put words in my mouth that I did not say. Please try to watch that.

    Also please re-read Dr. Hey's post about the fallout he encounters.
    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."

  5. #20
    Join Date
    Jan 2008
    Location
    NC
    Posts
    9,317
    Lies can completely derail the parent-child bond for decades, if not forever. Sometimes folks don't realize it until it happens to them. I lost several years of a parental relationship because of a lie that I never realized was even affecting me until very late in the game. It is playing with fire to lie to a child. Ask yourself if that woman from New Jersey felt that she was lied to. Imagine how that might ramify through her relationship to her parents. This is not a game or idle chatter or neither here nor there as some here view it.

    Lies based on parental ignorance are still viewed as lies by the child. Sooner or later they will get the straight dope. This is not a game of making the parent feel better. The child is what matters.
    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. #21
    Join Date
    Jan 2008
    Location
    NC
    Posts
    9,317
    Anyone who thinks scoliosis fusion in the cases where a consensus recommends it is a choice needs to get out more. There is no real choice in those cases. My kids would likely be dead or disabled for gone by suicide by now absent fusion.

    If fusion was a choice then nobody would get it. But we don't obtain that result. Think. Just think.
    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. #22
    Join Date
    Aug 2004
    Location
    ny
    Posts
    1,805
    Quote Originally Posted by Pooka1 View Post
    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.
    Hi Sharon,

    I'm sorry, I think I was unclear (probably rushing and I typed too quickly).

    The makers of Spinecor (surgeons) only do in-brace radiographs. You are correct. So these 2 surgeons and the chiros do it this way.

    Every OTHER surgeon (any that I have spoken to anyway) agrees the brace needs to be off for 24-48 hours for an accurate reading.
    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/

  8. #23
    Join Date
    Aug 2004
    Location
    ny
    Posts
    1,805
    Quote Originally Posted by LindaRacine View Post
    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
    Thanks, Linda.

    I thought maybe it was just me, but I've never come across much on the subject - nothing at least, that listed any percentages, etc.

    I'd be interested in what this fellow comes up with, or any future data on the topic for that matter.
    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/

  9. #24
    Join Date
    Aug 2004
    Location
    ny
    Posts
    1,805
    Quote Originally Posted by hdugger View Post
    Again, that's a total guess, but I'd be surprised to hear a number lower then 10% or higher then 50%.
    It doesn't sound like an unreasonable guess to me. We could be talking about 15-20% or 30-35% - doesn't seem like anybody really knows for sure. So that "higher than 10 percent but lower than 50%" that you've come up with may be as close as anyone has come to narrowing it down thus far :-)
    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
    Join Date
    Aug 2004
    Location
    ny
    Posts
    1,805
    Sharon,

    I just wanted to say I don't think you were being unclear. Or maybe what I should say is that I understood your original post the way I believe you intended it.

    I get that there are two different issues here (the original topic of what children are or aren't told about bracing - and the revision rates) and that your post had nothing to do with the latter.

    Somehow they became one, and I could see how that might happen, but I do understand completely what you are saying that one has nothing to do with the other in terms of your original post.

    Having NOTHING to do with this thread or any parent here (now I want to make sure I am being clear, LOL), I happen to have a problem with telling kids anything but the truth. Sometimes the hubby will tell a stupid white lie (oh, sure maybe we can go to the zoo tomorrow - when he knows we won't) or I will hear a parent tell a similar silly white lie - and it makes me absolutely NUTS. Just say the truth! I guess we are all just wired differently.....
    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
    Join Date
    Jan 2008
    Location
    NC
    Posts
    9,317
    Quote Originally Posted by mariaf View Post
    Hi Sharon,

    I'm sorry, I think I was unclear (probably rushing and I typed too quickly).

    The makers of Spinecor (surgeons) only do in-brace radiographs. You are correct. So these 2 surgeons and the chiros do it this way.

    Every OTHER surgeon (any that I have spoken to anyway) agrees the brace needs to be off for 24-48 hours for an accurate reading.
    Oh hey I see now you were clear. I was reading and responding on a tablet in a noisy airport. Sorry. :-)

    Parents on this forum are largely hip to the need for out of brace radiographs when using Spinecor. And yet the folks up in Montreal still cling to their protocol. I think journals need to scrupulously avoid publishing any in-brace data or any data that is not gained after at least 48 hours out of brace. The literature is messy enough with adding to it with nonsense.

    I have always wondered what the Spinecor inventors think of how this has played out with largely only chiros providing the brace and only a literal handful of surgeons doing so, at least in the US. I bet they were blindsided by that but when nobody can replicate the results, what else did they expect?
    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. #27
    Join Date
    Jan 2008
    Location
    NC
    Posts
    9,317
    Quote Originally Posted by mariaf View Post
    It doesn't sound like an unreasonable guess to me. We could be talking about 15-20% or 30-35% - doesn't seem like anybody really knows for sure. So that "higher than 10 percent but lower than 50%" that you've come up with may be as close as anyone has come to narrowing it down thus far :-)
    I predict that number will be in the low single digits for T fusions that end at L1 and above. Our surgeon seems to think it will be indistinguishable from zero for at least some classes of these T fusions. Given that other fusions (high T, L, etc.) have not been "solved" to the same extent as T fusions, I wouldn't hazard a guess about revision rates. The only think that I have seen said is the likely of needing distal extension tends to scale with last instrumented vertebra when getting to L3 and below. The lower you go the higher the chance.

    In any case, it makes no sense to lump all fusions together into one "revision rate" when we know already know some have a near 100% chance of needing extension and some have a near 0% chance of needing extension based on the data in hand now.
    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."

  13. #28
    Join Date
    Jan 2008
    Location
    NC
    Posts
    9,317
    Quote Originally Posted by mariaf View Post
    Having NOTHING to do with this thread or any parent here (now I want to make sure I am being clear, LOL), I happen to have a problem with telling kids anything but the truth. Sometimes the hubby will tell a stupid white lie (oh, sure maybe we can go to the zoo tomorrow - when he knows we won't) or I will hear a parent tell a similar silly white lie - and it makes me absolutely NUTS. Just say the truth! I guess we are all just wired differently.....
    I agree. Kids affected by scoliosis have a right to the fact case as it exists explained in terms they can understand. It's their bodies. I see the issue as being of a piece with larger issues in society.

    Just because a parent hasn't encountered fallout doesn't mean it won't happen. This thread is a PSA in my opinion.
    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
    Join Date
    Aug 2004
    Location
    ny
    Posts
    1,805
    Quote Originally Posted by Pooka1 View Post
    I have always wondered what the Spinecor inventors think of how this has played out with largely only chiros providing the brace and only a literal handful of surgeons doing so, at least in the US. I bet they were blindsided by that but when nobody can replicate the results, what else did they expect?
    Sharon,

    Are there any orthopedic surgeons in the US prescribing this brace? I think there are a few who might say to parents "OK, if you really want to use the Spinecor instead of, say, a Boston brace, we'll support you and monitor the results" but I personally don't know of any who prescribe it themselves. Of course, the fact that I haven't heard of any means nothing :-)
    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/

  15. #30
    Join Date
    Aug 2004
    Location
    ny
    Posts
    1,805
    Quote Originally Posted by Pooka1 View Post
    I predict that number will be in the low single digits for T fusions that end at L1 and above. Our surgeon seems to think it will be indistinguishable from zero for at least some classes of these T fusions. Given that other fusions (high T, L, etc.) have not been "solved" to the same extent as T fusions, I wouldn't hazard a guess about revision rates. The only think that I have seen said is the likely of needing distal extension tends to scale with last instrumented vertebra when getting to L3 and below. The lower you go the higher the chance.

    In any case, it makes no sense to lump all fusions together into one "revision rate" when we know already know some have a near 100% chance of needing extension and some have a near 0% chance of needing extension based on the data in hand now.
    You make a good case. I do recall Dr. D'Andrea once telling me that since David has a single T curve, that if he ever did need fusion it would be pretty straight-forward. She was really talking about losing very little flexibility (vs. a longer fusion), but it makes sense that T fusions would cause fewer issues long term.
    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/

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •