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Thread: scoliosis surgery epidemiology- statistics and benefits

  1. #1
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    scoliosis surgery epidemiology- statistics and benefits

    Statistically speaking, 3 over 100 children that are born have scoliosis. I wonder how many of those have to be submitted to scoliosis surgery. Does anyone have numbers?

    Is 0,1%, that is, 1 over 1000 children born a good guess? or is it even less?
    I am talking about those who need surgery. The ratio that I want to know is: population that needs surgery VS population that don't need scoliosis surgery.

    Linda Racine, may you help here?

    If surgery is so rare I wonder why social welfare won't give some form of benefits to those who suffer from a fused spine. It fits into the definition of "disability", I am not using the term pejoratively, but the reality is that you lose mobility, so you may use those parking spots assigned and so on. Do you agree? What is the reality in your country?

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    Quote Originally Posted by richardis View Post
    Statistically speaking, 3 over 100 children that are born have scoliosis. I wonder how many of those have to be submitted to scoliosis surgery. Does anyone have numbers?

    Is 0,1%, that is, 1 over 1000 children born a good guess? or is it even less?
    I am talking about those who need surgery. The ratio that I want to know is: population that needs surgery VS population that don't need scoliosis surgery.

    Linda Racine, may you help here?
    I think Linda will have better numbers but I have heard that about 1 in 1,000 cases becomes surgical but I haven't chased that down.

    If surgery is so rare I wonder why social welfare won't give some form of benefits to those who suffer from a fused spine. It fits into the definition of "disability", I am not using the term pejoratively, but the reality is that you lose mobility, so you may use those parking spots assigned and so on. Do you agree? What is the reality in your country?
    My daughters are fused T4-L1 and have no disability whatsoever. In fact they never qualified for home schooling and were back in school full time between 3 and 4 weeks post-op. There is no way they could qualify for disability. The doctor released them to do ANYTHING except bungee jumping which nobody should be doing.

    With your fusion, did you lose any range of motion compared to when you had a curve? I suspect it would be very hard for you to prove any disability from being fused. Didn't you doctor release you to do anything you want? What do you want to do that you now can't do?
    Last edited by Pooka1; 02-02-2017 at 07:03 AM.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
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    "We are all African."

  3. #3
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  4. #4
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    I guess they would only have the stats for those that had surgery rather than those at surgery levels who may not be eligible for surgery for other health reasons.

    I think having scoliosis without treatment is the disability- in theory a treatment should reduce the disability?

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    Quote Originally Posted by Pooka1 View Post
    There is no way they could qualify for disability. The doctor released them to do ANYTHING except bungee jumping which nobody should be doing.

    With your fusion, did you lose any range of motion compared to when you had a curve? I suspect it would be very hard for you to prove any disability from being fused. Didn't you doctor release you to do anything you want? What do you want to do that you now can't do?
    Your daughters do have reduced mobility, as I do. Sorry, that is a fact and we can't argue with that. I did have "different mobility" before surgery because some vertrebrae were 3D deformed. And I miss that, I can't lie to you. But on the other hand I now feel I can do handstands more easily than I did before. I didn't try them yet but I feel it. Backflips is another thing I feel I can do ( never did them in my life) but I feel that they are within my reach now. No joking! So there are advantages and disadvantages.

    I try to be fair. This may hurt those who have scoliosis ( I have that condition as well) but I can't lie to myself: I am less-abled than those who have a straight and mobile spine. I don't want disability benefits, I just want the truth out. And the truth is: we have reduced mobility.

    My doctor said:" gymnastics are to avoid, running is to avoid, competitive sports are to avoid, exercises that put stress on the spine are to avoid ( e.g. lat pull-downs), flips and somersaults are to avoid, weights are to avoid. But will I give up on having a life because of this? No, I will do these things in moderation.

    I can't strenghten my body as other folks do, but I will train my mind to be better and I will continue to pursue a career that emphazises the power of knowledge. And that can be my competitive advantage. In that sense, scoliosis has changed my path in life, for the better or for the worse.
    Last edited by richardis; 02-02-2017 at 07:15 AM.

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    Quote Originally Posted by burdle View Post

    I think having scoliosis without treatment is the disability- in theory a treatment should reduce the disability?
    I agree with you if surgery is successful. But surgery is a treatment, not a cure. Those who have scoliosis have already reduced or different mobility ( with or without surgery). But surgery reduces it further. You can't deny this.


    But if we want more justice in society, scoliosis sufferers need some sort of extra help, either by benefits, income taxed in the lower bracket-range, tax deductions, whatever.

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    Quote Originally Posted by richardis View Post
    My doctor said:" gymnastics are to avoid, running is to avoid, competitive sports are to avoid, exercises that put stress on the spine are to avoid ( e.g. lat pull-downs), flips and somersaults are to avoid, weights are to avoid. But will I give up on having a life because of this? No, I will do these things in moderation.
    This goes to show that every case is different. There are any number of fused people, many with longer fusions than yours, on Dr. Hey's blog who returned to all kinds of sports very quickly. My daughters have no restrictions for any sport.

    Are you sure those restrictions are related to our fusion and not something else?

    You have a relatively short fusion in an area of your back that has very little range of motion that didn't have normal range of motion before your surgery. That is similar to my girls who do not feel their ROM is much different compared to when they had large curves. If you could have seen them, this claim of theirs is entirely believable... you can't do much hunched over like that.

    They feel normal and act normal. One works out at the gym several times a week, wears weighted vests running, etc. etc. If the authorities knew about that she would be completely disqualified from disability. Do you see my point? No issues because her surgeon cleared her for anything she wants to do (besides bungee jumping).
    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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    Quote Originally Posted by richardis View Post
    I agree with you if surgery is successful. But surgery is a treatment, not a cure. Those who have scoliosis have already reduced or different mobility ( with or without surgery). But surgery reduces it further. You can't deny this.
    My daughters have denied it.

    But if we want more justice in society, scoliosis sufferers need some sort of extra help, either by benefits, income taxed in the lower bracket-range, tax deductions, whatever.
    But many fused people have no disability whatsoever. Why should they get a government handout?
    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. #9
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    Quote Originally Posted by Pooka1 View Post
    Why should they get a government handout?
    It is not a handout, it is more a spine-in. I think we should fight for our rights. Do you choose scoliosis? I didn't and getting a helping hand is not something to be ashamed of. An yes, when I am in pain I feel myself disabled.

    I am sorry to press on this key again, but scoliosis causes pain ( even if treated surgically). And pain can be debilitating. The biggest lie on the medical textbooks is that scoliosis is a pain-free condition.

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    Quote Originally Posted by richardis View Post
    It is not a handout, it is more a spine-in. I think we should fight for our rights. Do you choose scoliosis? I didn't and getting a helping hand is not something to be ashamed of. An yes, when I am in pain I feel myself disabled.

    I am sorry to press on this key again, but scoliosis causes pain ( even if treated surgically). And pain can be debilitating. The biggest lie on the medical textbooks is that scoliosis is a pain-free condition.
    Do you still have pain???

    My daughters have no pain and I used to ask them regularly. I stopped asking. As I said, they lead normal, non-restricted lives.
    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."

  11. #11
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    Quote Originally Posted by richardis View Post
    It is not a handout, it is more a spine-in. I think we should fight for our rights. Do you choose scoliosis? I didn't and getting a helping hand is not something to be ashamed of. An yes, when I am in pain I feel myself disabled.

    I am sorry to press on this key again, but scoliosis causes pain ( even if treated surgically). And pain can be debilitating. The biggest lie on the medical textbooks is that scoliosis is a pain-free condition.
    I do agree with you about the pain. With the broad definition of scoliosis as it is it is difficult to see how any sort of disability benefit could be applied. I do think it would be good if there were some as it is life restricting. SOSORT asked for clarity of definition as a goal in scoliosis treatment- I think this is long overdue. A lot of people have a scoliosis which causes them no issues- Somehow we need to distinguish those like you ( and me) who are suffering with pain to the detriment of our quality of life from those who do not. I am dreading getting 'really old' I just don't know how I will cope with pain and mobility.
    Last edited by burdle; 02-02-2017 at 08:46 AM.

  12. #12
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    Quote Originally Posted by Pooka1 View Post
    If the authorities knew about that she would be completely disqualified from disability. Do you see my point? No issues because her surgeon cleared her for anything she wants to do (besides bungee jumping).
    Who are you talking about when you say authorities?
    They x-ray everything today, so an x-ray should be enough. If they don't agree that this is a setback ask them to put screws and rods on their completely straight spines.

    Surgery is a fix , not a solution.

    I think that in the will to defend ourselves we keep attacking on our rights. If the authorities find odd seeing your daughters having fun, then something is completely wrong in the world.

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