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Thread: Questions fo rour Clear Chiro, Smith

  1. #91
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    just my thoughts

    So I was braced as a child around age 11. Only at night. It was not a horrible experience for me. It was HOT during the summer. I would fall out of bed at times and that hurt like HELL and when it was over i wanted to BURN that stupid thing. I'm not sure how much good it did me really.

    I am now 31 and my primary curve is at 38 degrees and then I have another one in my upper neck that is 13. SOrry I don't know all the terms because when the Dr.'s were talking about everything I was a child. I have seen numerous Dr.'s now and they have tried to say that my pain is not related to my scoli! I totally disagree. I believe if you are walking crocked your entire life that is putting strain on certain muscles and disc that wouldn't typically have that strain or wear and tear.

    My cousin also had scoliosis and her curve was at 60 degree's and she had surgery. She became a hunchbag from it. Obviously they didn't do something right. She stopped growing at the point. SHe says she does not have any pain. She is 32.

    SO who know's what the right course is to take. But they def. need more research on how to help people as they become older and are still suffering from scoliosis. Its not fun watching yourself slowly detiorate each day of your life. I would love to know how others are dealing with it.

    Sorry if i'm coming in on your conversation. I read quite a bit of the thread. SO just wanted to give my 2 cents. LOL

  2. #92
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    Red face so happy

    I'm sooo happy that this thread has turn to being more informative and positive! Thank you very much!!

  3. #93
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    Quote Originally Posted by kidbusiness2 View Post
    I am now 31 and my primary curve is at 38 degrees and then I have another one in my upper neck that is 13. Sorry I don't know all the terms because when the Dr.'s were talking about everything I was a child. I have seen numerous Dr.'s now and they have tried to say that my pain is not related to my scoli! I totally disagree. I believe if you are walking crocked your entire life that is putting strain on certain muscles and disc that wouldn't typically have that strain or wear and tear.
    While surgeons will often claim that back pain in kid is not very likely due to scoliosis, I am shocked to hear your surgeon say the same for adults! We have other people here with sub-surgical curves who are doing PT for pain. What is the surgeon's best guess as to why you have back pain if it isn't directly related to having a curve for at least 20 years? I'd really like to hear that answer.

    So who knows what the right course is to take. But they def. need more research on how to help people as they become older and are still suffering from scoliosis. Its not fun watching yourself slowly deteriorate each day of your life. I would love to know how others are dealing with it.
    Well actually I think they are trying PT which does seem to be effective for pain. I don't think it is a permanent solution in that you probably have to do it the rest of your life but that doesn't mean it wouldn't work as long as you are exercising.

    Sorry if I'm coming in on your conversation. I read quite a bit of the thread. SO just wanted to give my 2 cents. LOL
    This conversation is not owned by anyone. It is yours also if you want it to be. I'm glad you posted and I wish others would also.
    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. #94
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    Skevimc

    [QUOTE=skevimc;113716]Avoiding surgery is certainly the biggest aim of treatment, it's not the only aim. So it might not be entirely accurate to say they were needlessly braced.<snip>



    Hi Skevimc,

    I am confused about your statement above about the goals of bracing. I guess I am wondering what else you are referring to as aims of bracing besides avoidance of surgery. Would you please elaborate?

    Thanks!
    Gayle, age 50
    Oct 2010 fusion T8-sacrum w/ pelvic fixation
    Feb 2012 lumbar revision for broken rods @ L2-3-4
    Sept 2015 major lumbar A/P revision for broken rods @ L5-S1


    mom of Leah, 15 y/o, Diagnosed '08 with 26* T JIS (age 6)
    2010 VBS Dr Luhmann Shriners St Louis
    2017 curves stable/skeletely mature

    also mom of Torrey, 12 y/o son, 16* T, stable

  5. #95
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    Quote Originally Posted by Pooka1 View Post
    While surgeons will often claim that back pain in kid is not very likely due to scoliosis, I am shocked to hear your surgeon say the same for adults! We have other people here with sub-surgical curves who are doing PT for pain. What is the surgeon's best guess as to why you have back pain if it isn't directly related to having a curve for at least 20 years? I'd really like to hear that answer.
    I actually know quite a few adults, with very large curves, who say they have no pain. While I don't really like the statement that "scoliosis doesn't cause pain," it is technically correct. If scoliosis caused pain, it's unlikely that you'd find anyone with a large curve who didn't have pain. In adults, the pain is usually caused by degeneration.

    --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

  6. #96
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    Bracing does not reduce a curve permanently

    Quote Originally Posted by hdugger View Post
    I'd think that reducing the curve even for people below the surgical level would be an adequate goal for bracing. My son's first measurement was 35 degrees - if he could have stayed at that measurement and not progressed to 47, he would have had a great cosmetic and functional improvement. There's a whole lot of curve between the diagnosable level (around 25 degrees) and the surgical level (50 to 60 degrees).
    Hi hdugger,

    I agree that if bracing is going to be tried it should be tried earlier (25-30 degrees depending on the situation/age of child etc) rather than later. But SRS and all orthopedists I have talked to all say that the stated of purpose is curve stabilization, not curve reduction. It is widely accepted that bracing is not capable of, nor meant to, permanently reduce a curve. Transient reductions may be seen, but most sources say that those curves that are temporarily reduced will revert to their original measurement within a year or two of discontinuing bracing.

    So I do not think that reducing a subsurgical curve is a realistic goal, and parents of children with scoliosis should have this made abundently clear to them. Bracing does not reduce the curve. And once a curve is over 40-45 degrees, it is well accepted that bracing is not going to help and is therefore not usually recommended. Of course their are unique cases that fall outside of these general guidelines.
    Gayle, age 50
    Oct 2010 fusion T8-sacrum w/ pelvic fixation
    Feb 2012 lumbar revision for broken rods @ L2-3-4
    Sept 2015 major lumbar A/P revision for broken rods @ L5-S1


    mom of Leah, 15 y/o, Diagnosed '08 with 26* T JIS (age 6)
    2010 VBS Dr Luhmann Shriners St Louis
    2017 curves stable/skeletely mature

    also mom of Torrey, 12 y/o son, 16* T, stable

  7. #97
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    Quote Originally Posted by LindaRacine View Post
    I actually know quite a few adults, with very large curves, who say they have no pain. While I don't really like the statement that "scoliosis doesn't cause pain," it is technically correct. If scoliosis caused pain, it's unlikely that you'd find anyone with a large curve who didn't have pain. In adults, the pain is usually caused by degeneration.

    --Linda
    Okay then my very next question is, "Do folks with curves for decades have more and or earlier onset degeneration than folks who don't have curves?"

    Essentially I am asking if the degeneration seen in thirty years olds with curves is typical of all 30 years olds in magnitude and frequency. I am betting not. So while it is technically true that the curves don't cause pain, the curves are very likely driving the early-onset and(or) exacerbated degeneration, no?
    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."

  8. #98
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    Quote Originally Posted by hdugger View Post
    I'd think that reducing the curve even for people below the surgical level would be an adequate goal for bracing.
    But bracing is not claimed to reduce curves, only to potentially prevent progression.

    And I would pay to see someone tell a teenage girl to wear a hard brace 23 hours a day just to hold a curve that is known not to become surgical (Scoliscore <41). I wish them luck if they are honest about not reaching surgery territory anyway.

    ETA: I see Gayle already made the point. I should have read ahead.

    I think you are being very cavalier with the thought of bracing because you have never done it or witnessed it.
    Last edited by Pooka1; 12-24-2010 at 01:21 PM.
    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. #99
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    Quote Originally Posted by hdugger View Post
    I think the whole surgical cutoff emphasis really disregards how different a 25 degree curve is from a 45 degree curve.
    Not to a teenage girl who is faced with wearing a hard brace 23 hours a day.
    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."

  10. #100
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    Quote Originally Posted by hdugger View Post
    Sorry, I miswrote that. I don't mean that it reduces the curve, but that it reduces it *from what it would have been without bracing*.

    So, in my son's case, if bracing had held the curve at 35 degrees, that would have been a 12 degree reduction from what his curve ended up being six months later. Even though both measurements were below the surgical range, he looked and felt better at 35 degrees.

    There's just a whole lot of curve between 25 and 50 degrees, and if bracing can hold a curve anywhere below that 50 degree cutoff, it's worth the effort. I think the whole surgical cutoff emphasis really disregards how different a 25 degree curve is from a 45 degree curve.
    Hi hdugger,

    thanks for that correction! In other words, you're saying the other purpose of bracing (besides avoiding surgery) is to prevent/limit progression and increased deformity. I'm wondering if you were offered bracing as an option for your son at 35 degrees, or was he considered too far along in his growth that it was likely ineffective? There is a teenage girl here who was subsurgical at the end of her growth, then progressed in the next 1-2 years into surgical territory. Fortunately I think this is not the norm, but really must be a huge disappointment for those affected by late progression.
    Gayle, age 50
    Oct 2010 fusion T8-sacrum w/ pelvic fixation
    Feb 2012 lumbar revision for broken rods @ L2-3-4
    Sept 2015 major lumbar A/P revision for broken rods @ L5-S1


    mom of Leah, 15 y/o, Diagnosed '08 with 26* T JIS (age 6)
    2010 VBS Dr Luhmann Shriners St Louis
    2017 curves stable/skeletely mature

    also mom of Torrey, 12 y/o son, 16* T, stable

  11. #101
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    He wasn't offered a brace - in part, I think, because they thought he had stopped curving and in part because his curve was so high that they didn't think bracing was effective.

    As to tolerating bracing/tradeoffs/etc, that's really up to the individual child and parent to decide. Some would do it, some wouldn't. I don't find that a cavalier attitude. A 20 to 25 degree increase in curve is a huge deal. We certainly would have at least *tried* bracing to stop the curve from increasing, even if we were certain that it wouldn't get into the surgical range. I can't imagine we're the only family on earth who would make a similar calculation.

    Late progression is likewise a huge disappointment for those who don't brace, based on our own experience. We really, really, regret that we didn't try to do anything because we trusted that he had stopped curving. Again, he's not a bracing candidate (we later learned) but we really beat ourselves up over not more strongly pursuing bracing until we found that out.
    Last edited by hdugger; 12-24-2010 at 02:03 PM.

  12. #102
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    Quote Originally Posted by hdugger View Post
    A 20 to 25 degree increase in curve is a huge deal.
    Let's assume it is. Now add that bracing efficacy is uncertain and may be as low as a few percent chance of holding the curve.

    Now is there any kid who would agree to 23 hour a day hard 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."

  13. #103
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    By the way I really think you might want to review the posts in the bracing section written by kids. It's like we are discussing two completely different topics
    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. #104
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    I'm faced with a child with a permanent deformity which will likely increase and which surgery may make worse. Given our situation, yes we would have taken our chances had bracing been possible/offered.

    Again, it is (rightly) a decision between parent/child/doctor. Some will make the same calculation you're making, and some will make a different calculation. (BTW, uncertainty means that we don't know how effective it is, and not that we know it to be ineffective.)

  15. #105
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    Quote Originally Posted by hdugger View Post
    I'm faced with a child with a permanent deformity which will likely increase and which surgery may make worse.
    Not meaning to be nosy (even if I inherently am, heh) but I am curious to know why your son's condition might likely be made worse by surgery?

    The thing that is nagging at me in my son's case, is that I really am not all that afraid of him having spinal surgery b/c it seems that most teens seem to recover quite quickly and do well. I must have watched a hundred u-tube videos on scoliosis surgery and am pretty confident he'll come out alive and well BUT what if we did nothing and let's say his curve stayed where it is right now which is actually unknown but we do know it's at least 75* maybe a bit more. What would the quality of his life be let's say five years from now? He really isn't in pain other than some aches so why the hurry? I don't even know exactly how to put what I just said but mostly I am worried that the surgery will cause more problems down the road than just leaving things be. There's lots of people out there with big curves and seem to do pretty well.
    Son 14 y/o diagnosed January 20th. 2011 with 110* Curve
    Halo Traction & 1st. surgery on March 22nd. 2011
    Spinal Fusion on April 19th. 2011

    Dr. Krajbich @ Shriners Childrens Hospital, Portland Oregon



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