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Thread: I'm seriously evaluating EDF for my daughter

  1. #16
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    No creo lo hacen con pareja espinas. ¿Cuánto tiempo sería usado? La única manera que valdría la pena es si la corrección era permanente tras el elenco estaba despegado. No creo casting puede corregir una pareja columna o que lo haría rutinaria.
    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. #17
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    Well, at least I learned how to use the google translator! Is the girl's correction holding? Like I think Pooka1 asked, correct me if I'm wrong, if it works why aren't they using this technique all of the time? It seems simple, like you said, but there have to be drawbacks. I would find out what they are before I proceeded. It seems too big of a procedure to take any risks. Could there be dislocations of the vertebrae? If so, this could cause excruciating pain. My suggestion would be to find someone whom this didn't work for and see what they have to say.

  3. #18
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    If it's of any interest to you, for the first 10 years of my life (1976-1986) I wore EDF plaster casts and Milwaukee braces that were created using plaster moulds taken whilst on the EDF frame.

    I think they did a wonderful job in preventing me from progressing too quickly. The goal was to get me to the age of 10 before I had my first fusion surgery, and I made it, though around the age of 5 my notes stated that I'd probably need fusion at 8 or 9.

    I started off with Infantile Idiopathic curves of 62 and 40 degrees at the age of 6 months. EDF casts, as you'll know, can actually correct curves in infants due to the fact they have such soft bones they are able to be "moulded" into place. Sadly this did not work for me; it does not work for eveyone who starts off with a curve of this size, and double curves seem harder to treat than single ones.

  4. #19
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    Thanks Toni, all kind of information is useful for me. If you know about more people that have used Edf (especially teenagers) please let me know.
    Sorry Sharon, I’m not sure if I understand what you said me, please say me in English too.
    rohrer01, as you suggested, I’m thinking in risks. I don’t know if it could be possible what you said about dislocations. Edf is not being used in my country; I don’t know how to contact other people using it.
    In fact I want to do a mix of different solution. I don’t want to use EDF exactly as Cotrel said to use it. I think a rigid brace could be bad. It seems it would be a mystery for ever (at least for me) if Spinecor could be used when the plaster brace is removed.. is so difficult for me to get information..

  5. #20
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    Sorry, Fer. It was a machine translation.

    I don't think anyone will put a plaster cast on a mature spine. If this worked, nobody would ever need a fusion. But people still get fusions.

    How could it work? Maybe holding the spine in a straighter position for the months/years needed to re-shape the vertebra? But even if that happened the spine might curve again due to the primary reason it curved in the first place.

    Can you ask your surgeon why they don't cast mature spines.
    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
    Sorry, Fer. It was a machine translation.
    When I translate it back with a machine translation, I get this:

    "I think they do not even thorns. How much time would be used? The only way it would be worth it if the correction was permanent after the cast was off. I do not think you can correct a couple casting column or would routine."

  7. #22
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    Quote Originally Posted by hdugger View Post
    When I translate it back with a machine translation, I get this:

    "I think they do not even thorns. How much time would be used? The only way it would be worth it if the correction was permanent after the cast was off. I do not think you can correct a couple casting column or would routine."
    LOL. The second sentence, though, is exactly right.
    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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    I used a translator too, but it not seemed so clear for me as what Sharon now said me. I think translators are great, pero a veces demuestran que son solo máquinas y (todavía?) no piensan.
    Sharon, It’s true what you say about a historical cause that could be working still now, but is not possible to be sure a priori. I could understand some causes during growth and I can imagine others, but no one except gravity force and vicious cycle after growth.
    I think that vertebras are not the problem in my daughter. I think discs could be the problem, so stopping the degeneration process because the compression, should to help.
    If discs could regain some of their height in the concave side, the curve should to be reduced. Or not? I don’t believe that her spine would remains absolutely straight when the brace will be removed. I think that probably 10° could be reduced. This means a great difference for me.

    Of course we could do the same question about any other non surgical treatment. If it works, why surgeons don’t use it? I think surgeons are so sure that is so impossible to reduce degrees after skeletical maturity as living for ever, and anyway they could do a surgery, so why to waste the time thinking about something else?
    The surgeon said me time ago he don’t know if it could works, he never heard about something like that before. But in fact I asked him to use a dynamic brace instead of a rigid brace to keep the stretching. This was my original idea, but I cannot know if a Spinecor could be used for this purpose and it seems that I’ll never know it.

  9. #24
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    I think that orthopedic surgeons think they *have* a cure - i.e., something which they can do (surgery) which straightens the spine. Since it's unlikely that the field of orthopedic surgery is going to produce a procedures which creates a normal (unfused and uncurved) spine), fusion is probably the best solution they're going to get.

    That's not to say that, looking into the future, fusion will always be the best possible solution for a curved spine, but I suspect it will always be the best *surgical* solution for a curved spine.

    So, spinal surgeons don't have any reason to continue looking. They have largely hit the pinnacle of the kind of solution they can offer. They can improve the way they do fusion, but fusion is likely to remain their solution.

    It's doctors in *other* specialties who might be looking for a more elegant cure.
    Last edited by hdugger; 05-31-2010 at 11:14 AM.

  10. #25
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    Quote Originally Posted by flerc View Post
    Of course we could do the same question about any other non surgical treatment. If it works, why surgeons don’t use it? I think surgeons are so sure that is so impossible to reduce degrees after skeletical maturity as living for ever, and anyway they could do a surgery, so why to waste the time thinking about something else?
    The surgeon said me time ago he don’t know if it could works, he never heard about something like that before. But in fact I asked him to use a dynamic brace instead of a rigid brace to keep the stretching. This was my original idea, but I cannot know if a Spinecor could be used for this purpose and it seems that I’ll never know it.
    There is no evidence Spinecor can permanently reduce a mature curve. In fact they don't even try to claim this. What the brace does is take over for muscle to improve the posture which in some not all adults will lessen pain. But the curve and pain will likely return after they come out of brace because the muscles are weakened from a few years of letting the brace hole the torso up. "Dynamic" just means "looser" and that may explain the lack of efficacy of Spinecor in AIS. Spinecor does not admit any of this but I would be interested in hearing from McIntire on this point.

    If Spinecor worked in mature spines, every surgeon would be prescribing it. The reason they don't is because there is no evidence it can do that.
    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. #26
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    Quote Originally Posted by hdugger View Post
    I think that orthopedic surgeons think they *have* a cure - i.e., something which they can do (surgery) which straightens the spine. Since it's unlikely that the field of orthopedic surgery is going to produce a procedures which creates a normal (unfused and uncurved) spine), fusion is probably the best solution they're going to get.

    That's not to say that, looking into the future, fusion will always be the best possible solution for a curved spine, but I suspect it will always be the best *surgical* solution for a curved spine.

    So, spinal surgeons don't have any reason to continue looking. They have largely hit the pinnacle of the kind of solution they can offer. They can improve the way they do fusion, but fusion is likely to remain their solution.

    It's doctors in *other* specialties who might be looking for a more elegant cure.

    Fortunately I knows some exceptions, but at least in my country, if I visit a doctor of other speciality, they says mm.. scoliosis, well you need to see a surgeon, and refuse to say any more.

  12. #27
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    Quote Originally Posted by hdugger View Post
    So, spinal surgeons don't have any reason to continue looking. They have largely hit the pinnacle of the kind of solution they can offer. They can improve the way they do fusion, but fusion is likely to remain their solution.
    No I think it is likely that a surgical solution that preserves motion will occur before they solve the etiology and develop a preventative cure. Maybe Linda knows.
    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. #28
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    Quote Originally Posted by flerc View Post
    Fortunately I knows some exceptions, but at least in my country, if I visit a doctor of other speciality, they says mm.. scoliosis, well you need to see a surgeon, and refuse to say any more.
    Orthopedic surgeons are the only game in town. They are the only people trained to treat scoliosis in both conservative and surgical approaches.

    Many people on this forum don't like this fact but that doesn't change anything.
    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. #29
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    Quote Originally Posted by Pooka1 View Post
    There is no evidence Spinecor can permanently reduce a mature curve. In fact they don't even try to claim this. What the brace does is take over for muscle to improve the posture which in some not all adults will lessen pain. But the curve and pain will likely return after they come out of brace because the muscles are weakened from a few years of letting the brace hole the torso up. "Dynamic" just means "looser" and that may explain the lack of efficacy of Spinecor in AIS. Spinecor does not admit any of this but I would be interested in hearing from McIntire on this point.

    If Spinecor worked in mature spines, every surgeon would be prescribing it. The reason they don't is because there is no evidence it can do that.
    I think Spinecor people falls in the same error: adjusting the spine to a wrong posture. It could works sometimes during growth, of course.

  15. #30
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    Quote Originally Posted by flerc View Post
    I think Spinecor people falls in the same error: adjusting the spine to a wrong posture. It could works sometimes during growth, of course.
    If there was evidence for that then every surgeon would be prescribing it. But we don't see that.

    Rather than acknowledge the obvious, this is what drives normally rational people to suggest either that surgeons are evil and want to do surgery for the money or that they are incompetent and just too dumb to recognize a cure right in front of them.

    Sadly and shamefully, we have seen both these arguments on this forum either stated as such or necessarily implied. Scoliosis makes people lose their mind at times.
    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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