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Thread: Bracing delaying vs avoiding surgery

  1. #1
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    Bracing delaying vs avoiding surgery

    delay versus avoid surgery

    "It is important for parents and adolescents with scoliosis to know that bracing can help slow down curve progression during adolescence, but it does not guarantee that the curve will not progress during adulthood, even if the curve when you finish growing is less than 50 degrees. Meredith, who works in my office at Hey Clinic had a 30 degree curve when she was done growing, but the curve went to 45 degrees when she was a senior in college, at which point she had it fixed. Many others have had similar experiences, and are often angry if they were not told about the potential for progression after they were 'done growing.'"

    Okay this comports with the testimonials on here but does NOT comport with my understanding of what our surgeon told us. I will have to ask about this.
    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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    Quote Originally Posted by Pooka1 View Post
    Okay this comports with the testimonials on here but does NOT comport with my understanding of what our surgeon told us. I will have to ask about this.
    What doesn't match up? That skeletally mature curves under "n" can take off in adulthood? I'm curious ...

    Regards,
    Pam
    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


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  3. #3
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    Quote Originally Posted by txmarinemom View Post
    What doesn't match up? That skeletally mature curves under "n" can take off in adulthood? I'm curious ...
    He told me that if my daughter is less than 50* at maturity she will be almost certainly out of the woods on needing surgery in her lifetime. I initially interpreted this to mean she wouldn't progress at all over her life. But I later realized he probably meant that the progression rate for curves <50* at maturity is usually so slow that you won't hit surgery territory in your life time.

    Thus I was focused like a laser on 50* because 50* is some statistically important threshold in the retrospective data I guess.

    That focus is not warranted as far as I can tell. My kid is 36* - 40* (likely mature now) and I wouldn't bet even $100 that she is almost certain to avoid surgery in her lifetime based on the testimonials here and on Hey's blog.
    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."

  4. #4
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    Quote Originally Posted by Pooka1 View Post
    Thus I was focused like a laser on 50* because 50* is some statistically important threshold in the retrospective data I guess.

    That focus is not warranted as far as I can tell. My kid is 36* - 40* (likely mature now) and I wouldn't bet even $100 that she is almost certain to avoid surgery in her lifetime based on the testimonials here and on Hey's blog.
    I really hope that's Willow does avoid surgery (if she's not in pain ... as I've said, mine started early - and my worst day now is 1000x's better than my BEST, pre-op).

    It's just hard to predict ... and no ... 50 isn't as magical as they thought (even 10 years ago). As you well know, there are people on here who matured skeletally (Debbe? What was your final OOB Milwaukee #?) at 30 and progressed after childbirth, etc. Then there are those like me ... who stuck at 48-53 all my life, should have progressed - and didn't.

    Not entirely sure there's an "not ever" point for stopping or starting up again ... but I hope they find the causatives .

    Pam
    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
    EMAIL ME

  5. #5
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    Quote Originally Posted by txmarinemom View Post
    Then there are those like me ... who stuck at 48-53 all my life, should have progressed - and didn't.
    And even at that, Pam, I don't consider that as "life"-- you were/are still pretty young! There are those like me who had scoli that was noticed by a few during adolescence and adulthood (so I know I had it then) but it didn't become anything serious until my 50s-- so it's possible yours might have progressed once you hit menopausal years. Just a thought. I don't see how a doctor can say there won't be a problem later on, just based on my own case. Surely I'm not that unique!
    66 and still heartbroken...
    2007 52 w/ severe lumbar stenosis & L2L3 lateral listhesis (side shift)
    5/4/07 posterior spinal fusion T2-L4 w/ laminectomies and osteotomies @L2L3, L3L4
    Dr. Kim Hammerberg, Rush Univ. Medical Center in Chicago

    Corrected to 15
    2014 DXd w/CMT (type 2)

    Click to view my pics: pics of scoli x-rays digital x-rays, and pics of me

  6. #6
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    Yes I agree. Even if she doesn't need surgery for progression, there is no guarantee she won't need it for pain associated with having scoliosis for years.

    But there must be some data that supports the 50* threshold. I mean our surgeon told me that like last year although you say some surgeons have recognized it isn't a magic number. I'd just like to see the data. I'm guessing it's flimsy.
    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 Susie*Bee View Post
    And even at that, Pam, I don't consider that as "life"-- you were/are still pretty young! There are those like me who had scoli that was noticed by a few during adolescence and adulthood (so I know I had it then) but it didn't become anything serious until my 50s-- so it's possible yours might have progressed once you hit menopausal years. Just a thought. I don't see how a doctor can say there won't be a problem later on, just based on my own case. Surely I'm not that unique!
    Susie,

    Out of curiousity, when was your curve discovered, were you braced, and was it monitored over the years from when it first presented?

    Although I was told back in '79 that I was AIS (they didn't break out JIS back then), in Hanson's opinion, I wasn't. I was 10 when the curve was discovered, but it was already 35-40. I had many, MANY A/P x-rays over the years and mine never moved from where it stopped when I (officially) came out of the brace; not even during either pregnancy.

    It's possible mine could have moved later, but most people I know who end up with mid-life fusions haven't kept track of it things the years (most didn't think they needed to, I'd guess).

    In general, I think it's a bit of a grey area when people think it snuck up on them ... when maybe it was moving a degree or two a year all along.

    Regards,
    Pam
    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
    EMAIL ME

  8. #8
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    Pam-- sorry I wasn't clear enough-- I've explained this before. I slipped through the cracks and never saw a doctor about it until I was 54... so obviously I hid it well and it must not have been too bad. I just know that friends mentioned my curvy spine in high school (like when wearing a swimsuit), my zippers didn't hang quite right, etc. I was 27 was when a doctor first mentioned it, but all he did was mention it-- I was pregnant and seeing him for that and he said "By the way, do you realize you have scoliosis?" End of discussion... So it was never measured or monitored. I am sure it progressed over the years to what it was when I had my surgery and didn't all happen at once. But I am also sure it got worse/more painful in my 50's. That is why I FINALLY brought the subject up to my present doctor... With my 3 curves kind of canceling each other out and my little bit of extra padding-- and the styles of clothing I choose to wear, my scoli was not real noticeable. In those two years from when I had my first cobb angle measurement till when I had my surgery, there was a 6 change. (And yes, I know there is room for error there...) But the pain was also increasing. I was diagnosed with the scoli, arthritis, DDD, a lateral listhesis, and severe lumbar stenosis. I guess my point in posting was to say that once you hit menopausal years (or just "older" age) things can possibly escalate again.
    66 and still heartbroken...
    2007 52 w/ severe lumbar stenosis & L2L3 lateral listhesis (side shift)
    5/4/07 posterior spinal fusion T2-L4 w/ laminectomies and osteotomies @L2L3, L3L4
    Dr. Kim Hammerberg, Rush Univ. Medical Center in Chicago

    Corrected to 15
    2014 DXd w/CMT (type 2)

    Click to view my pics: pics of scoli x-rays digital x-rays, and pics of me

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