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Thread: New here, should my daughter be braced?

  1. #1
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    New here, should my daughter be braced?

    I am new here, but have been looking for answers for a couple years.
    My daughter is now 9, she has had diagnosed idiopathic scoliosis for 2 years.
    Her curve has progressed from 18 degrees to it's current 32.
    She is embaressed of the hump in her back, as well,her rib protrudes.
    Her Dr. has said if it does not progress to 40 degrees no intervention is needed, he says a brace would not help, and that when she gets older, the surgery would be for cosmetic reasons only.
    We live in a very small town in Northern Ontario, her Dr. is in Winnipeg, I am waiting for a referral to Sick Kids in Toronto.
    Should I be more concerned or trust her specialist?
    Looking for feedback and help.

    Lisa

  2. #2
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    Quote Originally Posted by lisa m View Post
    I am new here, but have been looking for answers for a couple years.
    My daughter is now 9, she has had diagnosed idiopathic scoliosis for 2 years.
    Her curve has progressed from 18 degrees to it's current 32.
    She is embarrassed of the hump in her back, as well,her rib protrudes.
    Her Dr. has said if it does not progress to 40 degrees no intervention is needed, he says a brace would not help, and that when she gets older, the surgery would be for cosmetic reasons only.
    We live in a very small town in Northern Ontario, her Dr. is in Winnipeg, I am waiting for a referral to Sick Kids in Toronto.
    Should I be more concerned or trust her specialist?
    Looking for feedback and help.

    Lisa
    Hi. Sorry about the diagnosis.

    I think you need two or three opinions from Pediatric Orthopedic Surgeons.

    Certainly not General Practitioners.

    Not even Pediatricians.

    While there is no robust evidence in hand that bracing works, we also don't know that it doesn't work. The jury is out. While there is a clearer case in my opinion to forgo bracing in older kids, I think the situation with juvenile IS is far more challenging.

    Some things to investigate inlcude the non-fusion surgical approaches including Vertebral Body Stapling, Growth Rods, and Titanium ribs (VEPTR).

    Good luck.
    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. #3
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    Hi Lisa,

    I would try to see a pediatric orthopedic surgeon as soon as you can. It doesn't sound like your doctor is being proactive enough with your daughter. From what I've read and been through with my son, most kids are braced by the time their curves are around 25 degrees. Your daughter's curve(s) seem to increasing so it sounds like your on the right track to see the specialist in Toronto. Try to speed up the referral if it's going to take a long time to get in there (I've heard of some long waits in Canada on this forum).

    Also, doctors rarely do scoliosis surgery for cosmetic reasons so your doctor doesn't really understand all the issues. There can be serious health consequences with untreated, progressive curves, such as breathing problems. I don't want to scare you because your daughter is nowhere near that point yet. But the earlier a treatment plan is implemented, the more options are available such as different types of braces, different types of surgery besides fusion, etc.

    So it's great that you're getting that referral. Good luck with everything.
    Laurie

    Mother of Alexander & Zachary:
    Alex is 16 years old and in the 11th grade. He has congenital scoliosis due to a hemivertebrae at T10. Wore a TLSO brace for 3 1/2 years. Pre-op curves were T45 & L65; curves post-op are approx. T31 & L34. Had a posterior spinal fusion from T8 to L3 on 7/12/07 at age 12. Doing great now in so many ways, but still working on improving posture.
    Zach is 13 years old and very energetic.

  4. #4
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    Hi Lisa,

    I agree with everyone else that the approach your current doctor wants to take (waiting and doing nothing at this point for a 9 year old with a 32 degree curve) doesn't sound right to me. A lot of what he says (about having surgery only for cosmetic reasons, not taking action - including bracing - until the curve reaches 40, etc.) does not lead me to believe that he is as informed about scoliosis as he should be.

    True, the jury is still out on bracing, but a 32 degree curve - while it does require some action to try to halt progression - is considered moderate rather than severe and so perhaps bracing has a shot of at least stopping progression and maybe even allowing your daughter to avoid fusion.

    As someone else mentioned, there are also things like vertebral body stapling (VBS) which my son had, that acts as an "internal brace" and is mostly recommended for the same group that would be good bracing candidates (kids that are still growing, curves that are not too large - i.e., under 35-40, etc.)

    Of course, each case is different but I would urge you to see one or two pediatric orthopedic surgeons (prefereably who come highly recommended). I have heard very good things about the Sick Kids in Toronto by the way.

    Best of luck!
    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/

  5. #5
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    Thank's to all for your response,
    In all my research, I have never heard of a "internal body brace".
    This is something I will look into.
    I have been waiting since August for a response from sick kids, hopefully, I hear from them soon.
    By the way, her Dr. in Winnipeg is a pediatric orthapedic surgeon, this is scary.

  6. #6
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    Quote Originally Posted by lisa m View Post
    Thank's to all for your response,
    In all my research, I have never heard of a "internal body brace".
    That is not a technical term that is routinely used for the non-fusion surgical procedures. It is an apt description, though.

    If I had a kid with JIS, these "internal bracing" techniques are where I'd be looking as opposed to external bracing.

    This is something I will look into.
    I have been waiting since August for a response from sick kids, hopefully, I hear from them soon.
    By the way, her Dr. in Winnipeg is a pediatric orthapedic surgeon, this is scary.


    I'd like to hear that surgeon's explanation for why insurance companies pay out boatloads of money for supposedly cosmetic surgery.

    That comment belies a problem with that doctor IMHO.

    The comment about bracing not being effective is not out to lunch. Both the surgeons we have used have claimed the same thing at one point.
    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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    Quote Originally Posted by Pooka1 View Post
    That is not a technical term that is routinely used for the non-fusion surgical procedures. It is an apt description, though.
    I was going to reply similarly, Sharon. VBS is sometimes referred to as an internal brace because it is used in lieu of bracing but it's not a technical term.

    I hope that makes things clearer, Lisa - and please keep us posted.
    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. #8
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    Jun 2005
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    Manitoba, Canada
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    SpineCor is available in Manitoba at the end of January

    If you don't mind paying for it (it's $3300 and there are follow-up visits after one month and then approx every 3 months) Unless your insurance helps you cover it.

    It's in Winkler a little further west than Winnipeg.. about an hour. But in my experience you get in pretty quickly, especially compared to seeing some of the doctors in Winnipeg as they are so busy.

    The doctor there is Dr. Corbett and he's awesome. (edit) btw he is a chiropractor.. not a surgeon (edit)

    Might be worth going in for a consultation next time you're out west. I would really get a 2nd opinion regardless. In my unproffessional opinion, your daughter's age and progression warrant the use of some kind of brace.
    Last edited by carebear23; 01-18-2009 at 09:51 AM.
    Age 28
    diagnosed at age 12
    wore a boston brace until age 14
    No surgery, was on "wait and watch" till recently. Got a SpineCor (Jan 27th) to help ease the pain.
    T-curve 73 degrees with severe rotation (curves to the right)
    L-curve 45 degrees with slightly less severe rotation than my T-curve (curves to the left)

    1994 - 5'10" - T-?/L-? (i forget what they really were)
    2006 - 5' 4" - T-56/L-40
    2008/09 - 5' 4" - T-73/L-45

  9. #9
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    Wow - he thinks that surgery on those with large curves is for cosmetic purposes only.....I'm speechless as to his ignorance.

    2nd, your daughter is young still. Even if bracing doesn't eliminate the need for surgery down the line, perhaps it can delay it at least. Your daughter still has many years of growth ahead of her. If she were to progress to surgery levels soon, she might be required to have the growing rod and then ultimately fusion...in other words a couple surgeries or so a year until there has been enough growth in her spine to safely fuse her spine. I can't believe that hasn't entered that doctor's head.

    You are smart to pursue other opinions. Good luck.
    daughter, 12, diagnosed 8/07 with 19T/13L
    -Braced in spinecor 10/07 - 8/12 with excellent in brace correction and stable/slightly decreased out of brace curves.
    -Introduced Providence brace as adjunct at night in 11/2011 in anticipation of growth spurt. Curves still stable.
    -Currently in Boston Brace. Growth spurt is here and curves (and rotation) have increased to 23T/17L

  10. #10
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    May 2007
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    Rugby, UK
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    Hi Lisa,

    I don't want to scare you - every case is different, I know, but I shall tell you about my daughter as she sounds very similar to yours.

    Immi was diagnosed with Scoliosis when she was (just) 9. It had definately been around for longer than that as it had been pointed out to us by her gym coach, unfortunately the throw away comment went over my head & we did nothing about it until it bacome quite obvious (in japana).

    We first was her GP, who didn't take it seriously at all. After we insisted, she referred Immi to a general orthopaedic surgeon. He xrayed her & said, "28 degree curve. Come back in a year". I researched the internet & found out more about scoliosis in one hour than this guy seemed to know! Insisted on a referral to spinal specialist. He xrayed & said "32 degree curve. We beed to brace".

    More research (via this and other forums) turned up a fantastic scoliosis specialist. He measured her curve (4 months later, still aged 9) at 38 degrees.

    Immi is unlikely to avoid surgery - we were told that at age 9 with a 38 degree curve, her risk of progressing to surgery was 95 - 99%. She is wearing her brace, not in the hope of a cure, but to hold progression to allow her to grow before eventual surgery.

    I agree with the others! Push for 2nd and 3rd opinions. You only have one chance and need to be as informed as you can be.

    All the best!

    Laura
    UK based Mum of Imogen, 38 degree curve at 9 years old. SpineCor since 15/6/07, 31 degrees in brace.
    10th December 07 - 27 degrees, 23rd June 08 - 26 degrees, Feb 09 - 24 degrees, Aug 09 - 35 degrees, Jul 10 - 47 degrees, Dec 10 - 50+ degrees.
    Surgery due to take place early December 2011 at the RNOH, England.

  11. #11
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    Jan 2009
    Location
    Eagan, Minnesota
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    Well that really stinks that you are having to go through this and that your daughter is.
    I was put into a brace at 7 and wore it up until 6th grade and ended up with surgery because I wasn't wearing it like I was supposed to. My curves were all high 20s-high 30s (S curve). I really think you should get a second opinion about it. My pediatrician diagnosed me and sent me to a specialist (Twin Cities Spine Center) who put me in a brace immediately.

    Best of luck!

  12. #12
    Join Date
    Jan 2009
    Posts
    13

    advice

    I'm 15 years old, almost done growing. The doctors told me that my curves would never improve, but I am in a boston brace as of january 13th just to make sure they don't get any worse. I would consider bracing for your daughter. Though the brace won't fix the curves, it will prevent them from getting any worse!
    ********************
    curves:
    47 T
    25 L

    got my boston brace on Jan. 13, 2009


    i haven't had in-brace x-rays yet but I am getting them on March 4th

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