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Thread: I'm seriously evaluating EDF for my daughter

  1. #31
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    Quote Originally Posted by Pooka1 View Post
    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.
    May be in EEUU is different but in my experience, they donīt help very much in conservatives approches, simply because they think it would be impossible.

  2. #32
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    Quote Originally Posted by flerc View Post
    May be in EEUU is different but in my experience, they donīt help very much in conservatives approches, simply because they think it would be impossible.
    Surgeons prescribe braces in many JIS and AIS cases. Our surgeon prescribed a brace for one of my daughters. They also prescribe PT for pain as far as I know.

    Braces and PT are conservative approaches.

    I think you are talking about "alternative" approaches which are outside of medicine and science. These are approaches that don't have a rational physiological basis. Praying is one of these for example. Homeopathy is another example.
    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. #33
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    Quote Originally Posted by Pooka1 View Post
    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, what happens? Iím not saying surgeons would be idiots or bad people. In fact I feel a really great respect for our surgeon. I simply not agree with him and others surgeons in the point of irreversibility. Whatís the matter? Why could not they be wrong in this point?
    Also EDF was the idea of a great surgeon, not mine.

  4. #34
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    Quote Originally Posted by flerc View Post
    Sharon, what happens? Iím not saying surgeons would be idiots or bad people. In fact I feel a really great respect for our surgeon. I simply not agree with him and others surgeons in the point of irreversibility. Whatís the matter? Why could not they be wrong in this point?
    Also EDF was the idea of a great surgeon, not mine.
    NO! I was not talking about you. But others have said and implied these things.

    I think you are careful to say you are thinking about these things and you know when there is no evidence. Others are not so careful and that is what I am talking about. Others here do seem think that surgeons are either idiots or evil. Maybe both. They are letting their emotions take over for their mind.

    Casting is a legitimate conservative approach in certain patients. It is not an "alternative" approach because there is some scientific basis and indeed some evidence for casting.

    When "alternative" approaches show any evidence that they work then they move into the "conservative" column.

    You are trying to research this irreversibility issue and are being honest. I always read your posts because you are honest and a great father.
    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. #35
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    Ok Sharon. I think all we are here trying to solve a great problem or to help others. We never should to loose this from mind. This is a great Forum, the best I know.
    I think you are extremly scientist, and it's really great! I like to talk with you, because you have a great knowledge, a logic mind and also you are a very good mother.
    You could help me to do a good decision. What do you think about risks?

  6. #36
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    Quote Originally Posted by flerc View Post
    You could help me to do a good decision. What do you think about risks?
    What do I think about risks of casting a mature spine? Only a surgeon could guess.

    I do not think you will find a surgeon who will cast a mature spine so we will never know.

    In general though, just like with braces, when you restrict motion the muscles will deteriorate. When the patient comes out of a cast, to the extent the muscles were holding the curve, that will be much less and the curve might progress even quicker than before the cast. That is my guess.

    It could be the muscles are doing nothing to hold the curve in which case the casting will not adversely affect progression. That is my guess 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."

  7. #37
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    Quote Originally Posted by Pooka1 View Post
    It could be the muscles are doing nothing to hold the curve in which case the casting will not adversely affect progression. That is my guess also.
    Sharon, is really great to talk with you. That is exactly my suspect. I ever say that the back not collapse in a dead.

  8. #38
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    Quote Originally Posted by flerc View Post
    I ever say that the back not collapse in a dead.
    I was meaning that the spine would never bend to one side, as occurs with scoliosis, in a normal back. In the film ĎBe Coolí (J. Travolta) a dead remains sit down in a chair. Itís only a film, but common sense tells me this is true. I think that muscles donít avoid the spine to get a frontal curve shape. Vertebras and discs are the responsible, as once some surgeon said me. May be muscles work against, they could do worst, increasing the curve with an excessive tone or short length, but normal muscles could not reduce degrees by itself. They only could help to decompress discs doing some kinds of exercises.
    Iím right?

  9. #39
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    Quote Originally Posted by flerc View Post
    I was meaning that the spine would never bend to one side, as occurs with scoliosis, in a normal back. In the film ĎBe Coolí (J. Travolta) a dead remains sit down in a chair. Itís only a film, but common sense tells me this is true.
    Iím right?
    In fact is much more than a fact!! I was doing some experiments and it is absolutely impossible to get a frontal curve in my spine. No matter if Iím sleeping, unconsciousness or dead. The only way might be compressing my spine and pulling one side with a devastating force, like in the second picture http://www.sastre-roca.com/metodofed.html
    Which could be the source of such terrific resistance? The lack of this is the current cause of scoliosis without any doubt.

  10. #40
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    Quote Originally Posted by flerc View Post
    Which could be the source of such terrific resistance?
    The answer to this question should to be the same to this I asked to a neurology surgeon time ago: Which is the source of the resistance of a spine (with scoliosis) to be stretched? He said me he was present in hundreds of surgeries and he knew without any doubt it's because the rigidity of the sternum.

    Then I felt back pain, but when I was trying to make a curve in my spine, I didn't feel nothing in my muscles, ligaments, vertebras, joints.. but I felt something in my thorax..

  11. #41
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    Are there any x-rays of these patients while in the cast? I'd want to know for sure the spine is actually being flexed, elongated and derotated.

    I would have concern with stretching the ligaments/muscles/fascia too much or too quickly.

    After removal of the cast the muscles will be EXTREMELY weak.

    Depending on how long the cast is being worn, there will be a lot of bone, muscle, tendon, fascia remodeling after the cast is removed. Our tissues are shaped and formed the way they are due to, genetics of course, but also their function. That is, ligaments are oriented in the direction of the force they resist. This is done with collagen fibers. Ligaments and tendons are all aligned in the same direction but the collagen in skin is aligned in every direction because it resists forces in a variety of directions. As tissues heal/repair/form, collagen is laid down almost randomly. Once the body begins to use that tissue the body senses the force being applied and triggers the collagen to line up appropriately. If the concept is to unload the concave side so that vertebral and disc growth is symmetrical, I'm not sure how structurally sound that 'new' tissue would actually be.

    Astronauts lose bone and muscle mass because of zero gravity and this can happen relatively quickly. If no force is applied to the concave side, that side of the vertebrae could be less dense. Of course I'm making some very basic assumptions.

    You may have answered these questions already, but how old is your daughter?

    How do they determine how long to put the cast on?

    Do they take x-rays once the cast is on? and.. are there any pictures of this anywhere?

    What is the strategy for removing the cast?

    I like your basic idea of applying weights while in the cast in order to activate the muscles. It's a good idea to at least have some type of muscle activity during this period.

  12. #42
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    Thank you so much for your help!. Is nothing usual to me that a doctor answer my questions.
    First of all Iíll say you I start from the premise that reducing a significant number of degrees in a non surgical way at (or so close) the end of growth is not quite impossible. May be because my medical ignorance and because I have never heard an explanation that seems to me unquestionable such as that relating to why we can not move any more certain body parts if certain muscles were cut. May be becouse doctors in my country do not like to explain.
    All I heard gives me the pattern that is very difficult to achieve but not impossible, as I think is reasonable to say it would be with a terrible vertebral wedge, which I think is not the case of my daughter.
    She has 16 years, Riser 4 menarche at 12. Doctors said that her growth is at least almost finished. I understand it and I agree too.
    I'm not looking for reducing all the 56į of her torax lumbar curve, I also agree may be effectively impossible. Iím sure that 10ļ degrees would be a significant difference and I think is possible to be done, as seemed to occur some months ago, I donít know (x-rays said this).

    I donít know very much about EDF. I read that was used with teenagers up to 17 years. I have never seen x-rays or something else. I know the spine can be kept with a great reduction for about 4 months with the cast and then it is replaced (I donít know how it is removed) by a rigid brace. Long time ago a Cotrel machine was used during 2 weeks to reduce the curve. I have heard now is doing in an hour with the Fed machine http://www.sastre-roca.com/metodofed.html
    But EDF is for me just only the concept of stretching the spine and keeping this stretch. I think that only a mix of methods can reduce degrees.
    She is being treated with Rpg and she has a great flexibility. I think that a dynamic brace should to be best than a rigid one for EDF technique, but I donít know if Spinecore could be used at this purpose (could it be?)
    So Iím thinking in a semi rigid brace allowing doing those kinds of exercises with a weight over the shoulders.

    I donít know how itís possible, but I see her spine straight when she is lying down http://www.scoliosis.org/forum/showthread.php?t=10546 so I suppose her spine not need to be stretched with a sudden procedure and also I suppose it is deroteted too when it is stretched. Of course I should to be absolutely sure of these before adapting the brace to her straight spine. I think that having the spine straight, at least might help to disc recovery and structuring the rib cage in a best way (when does it reaches its full solidification the sternum?) leading to some reduction, but of course if something else turn worst, maybe not only not to reach some reduction but even to trigger progression. Iím really afraid of risks. I think you told me something about this.

    Astronauts lose bone and muscle mass because of zero gravity and this can happen relatively quickly. If no force is applied to the concave side, that side of the vertebrae could be less dense. Of course I'm making some very basic assumptions.
    I think it would be possible with a cast, but the brace Iím thinking in, I believe that just only not allows a lateral displacement, so the spine could not be curved again. Do you think that anyway the vertebras will not support weight?

    Quote Originally Posted by skevimc View Post
    Depending on how long the cast is being worn, there will be a lot of bone, muscle, tendon, fascia remodeling after the cast is removed. Our tissues are shaped and formed the way they are due to, genetics of course, but also their function. That is, ligaments are oriented in the direction of the force they resist. This is done with collagen fibers. Ligaments and tendons are all aligned in the same direction but the collagen in skin is aligned in every direction because it resists forces in a variety of directions. As tissues heal/repair/form, collagen is laid down almost randomly. Once the body begins to use that tissue the body senses the force being applied and triggers the collagen to line up appropriately. If the concept is to unload the concave side so that vertebral and disc growth is symmetrical, I'm not sure how structurally sound that 'new' tissue would actually be.
    Iím not sure if I understand right, but it seems a risk. Do you say that when the brace is removed, a new and randomize alignment would be triggered? There would not be any remodeling of tissues while the stretch is kept?
    Do you think that during growth, it would be less risk adapting a brace to the curve like in the traditional way, than stretching the spine before as in EDF?
    I think that something as removing the brace occurs when she wake up and get out of bed. Do you think that could be harmful or it need more time stretched to be risky?

    Thanks again and forgive me for so many questions!

  13. #43
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    Quote Originally Posted by Pooka1 View Post
    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.
    I am just now reading this thread for the first time and was thinking something similar recently. I've been rethinking the entire treatment approach, which in its current state has some obvious flaws, hence all the debate. I hope minds much more equipped to answer this have already considered it and dismissed it, but bear with me for a moment...

    It seems that some of the conservative therapies have actually had some mildly positive results in adults, but are often futile attempts against a child's rapidly progressing curve. The scolioscore work seems to support the theory that a curve is going to do what its going to do no matter what. I have a separate theory that even surgery doesn't hold up against your destiny and would be really curious if there is a way to see data showing the relationship between a scolioscore-like test (if it went higher than just reaching surgical range) and revision surgeries, but that's a separate point. Regardless, we try to address it at the youngest age possible because children are much more flexible and don't yet have any permanent damage, which might be what prevents adults from seeing any dramatic improvements.

    So what I'm suggesting is this... what if we could just let kids be kids and not try to change the direction of a speeding train. I realize it seems really risky (and for a small percentage of extreme curves just not an option), but for most is there really a difference between fusing at age 14 and let's say age 20? So when things have clearly stabilized, at whatever curve that might be, I am wondering if some smaller surgeries could be done to reform any wedged vertebrae without losing flexibility so that at least the foundation is normal. And then begin a longer journey of PT (borrowing from Schroth, CLEAR, SEAS) to work to reduce the curve.

    I'm sure there are big flaws in this theory, but I do think it's about time for some advancements. I just have never fully understood the status quo of treatment protocols, and am discovering that that is because they don't really make all that much sense. I also never really understood the electoral college when it was taught in school, and it turns out I was right about that too. There, now I've given everyone plenty of things to challenge, including politics. Woohoo!

    P.S. Casting an adolescent or adult seems a bit extreme and would surely lead to muscle atrophy, no?
    1993, Age 13, 53* Right T Curve w/ Left L compensatory
    2010, Age 30, 63* or 68* (depending on the doc) Right T Curve w/ Left L compensatory

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  14. #44
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    I'm unfortunately not going to remember the article, but I read a review recently that was primarily about vetrebral stapling but also mentioned some work being done to reshape wedged vertebrae. You'd have to somehow address whatever it is that's making people rotate, because that seems to be tied to progression. But, no, I don't think that's unreasonable. Making a spine not-a-spine is clearly not the most elegant surgical solution, and I'm sure there's a better way of addressing the problem.

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