Page 4 of 4 FirstFirst ... 234
Results 46 to 59 of 59

Thread: I'm seriously evaluating EDF for my daughter

  1. #46
    Join Date
    Aug 2009
    Posts
    1,164
    Here's the article I was trying to recall:

    http://www.spineuniverse.com/conditi...vertebral-body

    So, Betz is actually doing work in this area, although Lenke is concerned about the feasibility of such a treatment.

  2. #47
    Join Date
    Aug 2009
    Posts
    1,164
    And here are some additional articles:

    http://www.spineuniverse.com/profess...osis-2-15-year

    So, no, you're not crazy at all to consider this.

  3. #48
    Join Date
    Nov 2010
    Location
    Los Angeles
    Posts
    139
    Wow, thanks for posting. Here I thought it was just my own crazy invention. This gives me a lot of hope for the future. I really hope fusionless surgery proves to be safe and effective and becomes the norm.
    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

    http://livingtwisted.wordpress.com/

  4. #49
    Join Date
    Mar 2010
    Posts
    2,004
    Quote Originally Posted by mehera View Post
    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!
    In some way our thoughts are similars. But I'm really so frustrated because I failed to find out two years before how the Spinecor work , when my daughter was still growing and with a Risser something lesser. I asked here and in other forums, I talked with many doctors and people wearing the Spinecor, but it was not just some months before, that I know that a dynamic brace may do the same that a gypsum one.

    Quote Originally Posted by mehera View Post
    P.S. Casting an adolescent or adult seems a bit extreme and would surely lead to muscle atrophy, no?
    A rigid brace.. who knows, but it's difficult to imagine this with a dynamic one.

  5. #50
    Join Date
    Nov 2010
    Location
    Los Angeles
    Posts
    139
    Flerc, sorry you are frustrated and I also don't mean to commandeer your thread. I think the Spinecor has proven affective for some, but certainly isn't the most aggressive at holding/reducing curves. It's flexiblity means less muscle atrophy, but it also means it can't hold up to all curves.
    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

    http://livingtwisted.wordpress.com/

  6. #51
    Join Date
    Aug 2009
    Posts
    1,164
    Quote Originally Posted by mehera View Post
    Wow, thanks for posting. Here I thought it was just my own crazy invention. This gives me a lot of hope for the future. I really hope fusionless surgery proves to be safe and effective and becomes the norm.
    Betz seems like he's way out in the forefront of the fusionless treatment research. Hopefully he'll spark some interest in adult orthopedic surgeons.

  7. #52
    Join Date
    Sep 2003
    Location
    NJ
    Posts
    1,294

    I was treated in an even larger cast.

    In 1956 The usual treatment, which I experienced, was in a very large cast: neck to one knee.

    It was called a "turnbuckle jacket". There was a hinge in the major curve side, the cast was split in the middle and on the concave side was a turnbuckle. Every day the doctor came in and turned the turnbuckle to straighten the spine until the maximum correction was obtained. Then an uninstrumented fusion was performed through a large hole in the back of the cast.
    I then went home for 6 months for the fusion to heal__unable to walk the whole time(year). In 6 months the cast was changed and made a little lighter and shorter. Back home for 4 more months--still unable to walk. After about a total year I got a "walking cast" which could be removed for showering. I had to learn to walk again.

    I spent a total year in a corrected state in a cast--not walking! I was 13 and finished the treatment at 14.

    By the way I was considered to have stopped growing.


    The rest is in my signature.
    Last edited by Karen Ocker; 03-05-2011 at 07:13 PM.
    Original scoliosis surgery 1956 T-4 to L-2 ~100 degree thoracic (triple)curves at age 14. NO hardware-lost correction.
    Anterior/posterior revision T-4 to Sacrum in 2002, age 60, by Dr. Boachie-Adjei @Hospital for Special Surgery, NY = 50% correction

  8. #53
    Join Date
    Mar 2010
    Posts
    2,004
    Quote Originally Posted by mehera View Post
    Flerc, sorry you are frustrated and I also don't mean to commandeer your thread. I think the Spinecor has proven affective for some, but certainly isn't the most aggressive at holding/reducing curves. It's flexiblity means less muscle atrophy, but it also means it can't hold up to all curves.
    I also have heard that it cannot hold up curves > 50š or Risser > 2 or not so far from the end of growth, but if the spine is enough flexible and vertebras are not very much deformed.. why not?
    As I investigated, Spinecor may hold the spine in the best posture that current structure allow. Rotation is what not allow vertebral bodies to remains aligned, and it seems that the bands may hold the derotation. I know about a girl close to 16 years with 52š but holded in 33š with the Spinecor.

  9. #54
    Join Date
    Mar 2010
    Posts
    2,004
    Mehera, why are you using a rigid brace if it not hold some reduction of the curve? You was in pain?

  10. #55
    Join Date
    Nov 2010
    Location
    Los Angeles
    Posts
    139
    Quote Originally Posted by flerc View Post
    Mehera, why are you using a rigid brace if it not hold some reduction of the curve? You was in pain?
    The LA Brace was recommended to me to complement Schroth therapy. Both have a focus on derotation so the brace helps to replicate the movements learned in Schroth. The idea is to exercise in and out of the brace, but I was reluctant since I had always been told it was too late for a brace ever since I was diagnosed. In my new spirit of adults-are-free-to-be-guinea-pigs I decided to go for it. So far it has helped, combined with other things I am doing, to give me a good amount of flexibility and helped to train my muscles to move into a straighter position. It is also working as a sort of reset button for pain so that it doesn't build up -- I'm actually starting to look forward to putting it on at the end of the day when I'm feeling collapsed. But as far as I can tell so far I am not holding this correction throughout the day. I'm only using it part time so muscle atrophy isn't really an issue -- and I would even venture to say that my abs have never been simultaneously this long and strong at the same time. Maybe once I have my full Schroth routine over time that will help to train me to hold a straighter position, I don't know. My goals in all of this are pain management, flexibility, and a greater awareness and control over my posture in an effort to prevent progression. Basically if I can prevent my situation from ever getting worse than it is right now I will be a happy camper.

    I don't completely understand what EDF is beyond the plaster casting, but it seems like that approach requires rigidity 24/7 which would worry me. I think it's more important to be able to be in control of your curve in daily life, than to just achieve straightness through immense force, but maybe I am misunderstanding.
    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

    http://livingtwisted.wordpress.com/

  11. #56
    Join Date
    Mar 2010
    Posts
    2,004
    Quote Originally Posted by mehera View Post
    The LA Brace was recommended to me to complement Schroth therapy. Both have a focus on derotation so the brace helps to replicate the movements learned in Schroth. The idea is to exercise in and out of the brace, but I was reluctant since I had always been told it was too late for a brace ever since I was diagnosed. In my new spirit of adults-are-free-to-be-guinea-pigs I decided to go for it. So far it has helped, combined with other things I am doing, to give me a good amount of flexibility and helped to train my muscles to move into a straighter position. It is also working as a sort of reset button for pain so that it doesn't build up -- I'm actually starting to look forward to putting it on at the end of the day when I'm feeling collapsed. But as far as I can tell so far I am not holding this correction throughout the day. I'm only using it part time so muscle atrophy isn't really an issue -- and I would even venture to say that my abs have never been simultaneously this long and strong at the same time. Maybe once I have my full Schroth routine over time that will help to train me to hold a straighter position, I don't know. My goals in all of this are pain management, flexibility, and a greater awareness and control over my posture in an effort to prevent progression. Basically if I can prevent my situation from ever getting worse than it is right now I will be a happy camper.
    I donīt understand how may the vertebra be derotated without being stretched the spine, but I suppose that some stretching should to ocurrs anyway when the brace is pulling.
    I think you are in a right path and it seems that you may avoid surgery in the future.

    Quote Originally Posted by mehera View Post
    I don't completely understand what EDF is beyond the plaster casting, but it seems like that approach requires rigidity 24/7 which would worry me. I think it's more important to be able to be in control of your curve in daily life, than to just achieve straightness through immense force, but maybe I am misunderstanding.
    The great concept beyond EDF as I understand it, is extremly simple: Derotate and stretch the spine and then hold the stretching with a brace.
    If the streching is achived through the Cotrel Machine (as in the original version) or the Fed machine or some PT methods as Rpg, Global Active Stretching, PNF..or the brace is made with gympsun or other material or requires 24 or 18/7.. I think they are only details.. variations of the original idea.
    Of course, the greatest chances is during growth (but probably the great risks too), but maybe the brain after some time, accept that posture as the right posture and neuromuscular system try to adapt the new and best posture. May be a crazy idea, but why not the vertebra could be modified too? If could suffer modifications (wedge) to be worse, why not to be better?

  12. #57
    Join Date
    Nov 2010
    Location
    Los Angeles
    Posts
    139
    Quote Originally Posted by flerc View Post
    I donīt understand how may the vertebra be derotated without being stretched the spine, but I suppose that some stretching should to ocurrs anyway when the brace is pulling.
    There is definitely stretching/lengthening happening simultaneously. The way it fits, there is nowhere for the spine to go, but up. This is just my experience of what it feels like, I'm sure there's a more scientific explanation.
    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

    http://livingtwisted.wordpress.com/

  13. #58
    Join Date
    Mar 2010
    Posts
    2,004
    Quote Originally Posted by mehera View Post
    There is definitely stretching/lengthening happening simultaneously. The way it fits, there is nowhere for the spine to go, but up. This is just my experience of what it feels like, I'm sure there's a more scientific explanation.
    It seems to be a really good brace.

  14. #59
    Join Date
    Mar 2010
    Posts
    2,004
    Quote Originally Posted by flerc View Post
    It would be also possible to combine EDF with exercise that requires the muscles to fight against the gravity force to keep the spine straight, when some weight is put in the shoulders and a walk is performed with the spine straight (some therapy as Clear do the same?). I think that in this way muscles not only would not be suffering atrophy, but can do an exercise demanding so much the muscles that hold the vertical.
    I realized time ago that an amazing force is developed doing some activity, but only for that activity, when I practiced Jiu jitsu and I had to fight with an Olympic weightlifter. I was really afraid, looking her amazing torso, arms, back, but in the floor he had not much force, even I beated him. So I can not imagine other exercise more specific to strength those specific muscles. I think that as jiu jitsu people has an amazing force to fight, weightlifters to lifting weights, swimmers to swim.. people doing these exercise should has an amazing force to keep her back straight.
    A study proving that you can’t learn to play the piano by practicing on a banjo….
    "There is no basis to expect training effects from one form of exercise to transfer to any other form of exercise. Training is absolutely specific."
    www.cpdo.net/lecture_notes/cs_presentation.ppt
    Last edited by flerc; 08-17-2011 at 11:30 PM.

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •