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Thread: Interesting thread on FixScoliosis's blog

  1. #16
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    Quote Originally Posted by Pooka1 View Post
    If a surgeon told you your surgery placed you back in the general population on risk of ALL manner of future back problems, and you didn't have to do anything special over and above an unfused person to have the same risk, would you consider surgery a "treatment" or a "cure" at that point?
    If a surgeon told me that my surgery placed me back in the general population regarding risk of future back problems and that i could live my life without any restrictions (including bungee jumping) .. I would want to consider it a cure - i would also want to know what he based those statements upon (i.e. studies and/or what evidence).

  2. #17
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    Quote Originally Posted by mamamax View Post
    If a surgeon told me that my surgery placed me back in the general population regarding risk of future back problems and that i could live my life without any restrictions (including bungee jumping) .. I would want to consider it a cure - i would also want to know what he based those statements upon (i.e. studies and/or what evidence).
    That's wise. I want to now what they are based on also.

    Based on comments he told me, I am guessing he is basing that on:

    1. where her fusion ended (L1) (this is the overarching one as far as I can tell... I would not be surprised if this turned out to be the ONLY reason he said she is back in the population)

    2. her adherence to the 8-month physical restrictions

    3. the ability of the new instrumentation to completely address the major (only?) concern of the previous generation instrumentation (sagittal balance).
    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
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    Can you tell me what instrumentation was used? Looks very promising .. and like information i may want to keep in my back pocket ;-)

  4. #19
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    Quote Originally Posted by mamamax View Post
    Can you tell me what instrumentation was used? Looks very promising .. and like information i may want to keep in my back pocket ;-)
    Pedicle screws.

    I'm now wondering if virtually all the cases of problems with the previous instrumentation involved non-thoracic curves. It is my understanding that there are people with Harrington rods who still have no problems. I wonder if there is a pattern in who had problems.

    If it is the case that even the previous instrumentation was essentially a cure for certain curves then I could see our surgeon telling us surgery with the new instrumentation is one-stop shopping for my kid.
    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
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    Just in case my memory is going, here is what I wrote at the time of Savannah's 7.5 month appointment...

    NSF thread

    4. I asked about what Savannah can do to avoid stress/strain/whatever on the spine and discs above and below the fusion to minimize injury and the need for future revision/extension. I had assumed that maybe 30, 40, 50 years from now she might need a revision or extension of the fusion.

    He said she has nothing to do... she is back in the general population and will have no higher likelihood of spine/disc/whatever pathology/pain/whatever than an unfused person. I had to have this repeated because I couldn't believe it. He was insistent that because of where the fusion ended (L1), she is back in the general population in every respect with the same odds of back issues.


    So I guess the ONLY reason he feels she is back in the population is because the fusion ended at L1 based on what I wrote at the time of the appointment. Those other two reasons I listed I guess don't come into it as far as I can tell from what I wrote then.

    That post also reminds me I still don't have the digital radiographs. I want Savannah to have those. I'll ask for those again.
    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
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    Quote Originally Posted by Pooka1 View Post
    Just in case my memory is going, here is what I wrote at the time of Savannah's 7.5 month appointment...

    NSF thread

    4. I asked about what Savannah can do to avoid stress/strain/whatever on the spine and discs above and below the fusion to minimize injury and the need for future revision/extension. I had assumed that maybe 30, 40, 50 years from now she might need a revision or extension of the fusion.

    He said she has nothing to do... she is back in the general population and will have no higher likelihood of spine/disc/whatever pathology/pain/whatever than an unfused person. I had to have this repeated because I couldn't believe it. He was insistent that because of where the fusion ended (L1), she is back in the general population in every respect with the same odds of back issues.


    So I guess the ONLY reason he feels she is back in the population is because the fusion ended at L1 based on what I wrote at the time of the appointment. Those other two reasons I listed I guess don't come into it as far as I can tell from what I wrote then.

    That post also reminds me I still don't have the digital radiographs. I want Savannah to have those. I'll ask for those again.
    Sharon...

    I'm fairly certain that the majority of people who have had revisions after scoliosis surgery, had lumbar fusions. At least, that's what it seems like to me anecdotally. I do, however, know some people with thoracic fusions, who have had revisions, particularly in terms of proximal junctional kyphosis. I think there was one study that showed that about 25% of thoracic fusions had this issue, although I'm guessing these people are far less likely to report pain, and therefore have revision surgery. I also think that just knowing about this issue has helped specialists do a better job of selecting fusion levels to avoid the problem.

    Regards,
    Linda
    Last edited by LindaRacine; 06-19-2009 at 01:22 PM.

  7. #22
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    Quote Originally Posted by LindaRacine View Post
    Sharon...

    I'm fairly certain that the majority of people who have had revisions after scoliosis surgery, had lumbar fusions. At least, that's what it seems like to be anecdotally. I do, however, know some people with thoracic fusions, who have had revisions, particularly in terms of proximal junctional kyphosis. I think there was one study that showed that about 25% of thoracic fusions had this issue, although I'm guessing these people are far less likely to report pain, and therefore have revision surgery. I also think that just knowing about this issue has helped specialists do a better job of selecting fusion levels to avoid the problem.

    Regards,
    Linda
    Okay I didn't know that.

    But again, that is with older instrumentation that caused known problems. I'm betting with the new instrumentation that gets sagittal balance correct, maybe lumbar revisions will be rare also.

    And I can't get your comment out of my mind that earlier fusion may save some levels. If that is true, I don't know why they don't operate at much lower angles if it means not fusing the lumbar area. For example, my one daughter is at 36* - 40*. If I thought there was some chance that her fusion would extend into the lumbar by waiting until she gets to 50*, I would start asking many more questions about the "magic" 50* angle.

    I am starting to question the ethics of 50* if it means longer fusions in some, actually ANY cases. How is that ethical? What am I missing?

    I'm not saying a second revision/extension down the line is unthinkable. I was under the assumption my daughter would need to do that at some point until I was edified. I'm just saying I think I must be missing something here.
    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. #23
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    In Bridwell's paper that I read for the other thread, he stated that there is evidence that fusion at a younger age means less pain and better healing.

    If you put off fusion until your 30s or 40s, then you usually opt for surgery because of pain and usually the pain isn't completely resolved. (I admit. I am too lazy to go back it read it for the numbers--and the paper is 10 years old.) Maybe not fusing leads to more lumbar complications, but he doesn't explicitly say that.

    p

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