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  • #46
    Originally posted by flerc View Post
    I believe we are discussing about many different issues. I’ll refer to this by now:

    1) People promoting to erase braces from the face of the earth are doing the right.

    .
    .

    It seems not logic to say that that people are doing the right!.
    They should to do something else.
    Something like that:

    1) They should to advertise parents about the discomfort and probably traumatic situation that brace could provoke.
    2) They should to advertise parents, that seems to be contradictory or not so much convincing studies about the high or low effectiveness of braces to avoid surgery.. and at least many of them not clearly says if they were used in the right way or not.. something that seems to not be clear what means for all.
    3) They should to say parents that for everyone with a minimal rational mind and knowledge about physics laws and a basic knowledge about what scoliosis is, braces seems to be something so much important in an effective non surgical treatment trying to avoid surgery, if they are used under the right conditions.
    4) They should to say parents that for everyone with a minimal rational mind and knowledge about physics laws and a basic knowledge about what scoliosis is, that the right conditions under which braces should be used are high compliance and reduction in brace and the best should to be combining it with other methods.
    5) They should to advertise parents that surgeons seems to not include those conditions in the protocol and they are not giving any logic reason for that, except perhaps, what they may conclude assuming as a fact what they could have read in some of that studies, so is logic to suppose that the best would be to be sure that those conditions will be satisfied before beginning to use it.
    6) They should to explain parents how they can have a good idea about that by themselves, if they measure the flexibility, that is, the lenght difference between being stand up and lying down.
    7) They should to say parents about non surgical methods to gain flexibility if it is not enough.
    8) They should to advertise parents that are not evidence of something good until end of life with fusion.
    9) They should to advertise parents that there are absolute guarantees of bad and irreversible effects with fusion (it seems to not be any interest in reversing that fact).
    10) And then, they should to leave parents to decide what could be the best for their sons, instead of eliminating options for them.
    Last edited by flerc; 07-21-2012, 05:28 PM.

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    • #47
      Will The Bracing Make A Difference

      I have not posted for some time but one of my overall concerns is whether or not we are just delaying surgery with bracing.

      Syd is now 11 yrs. old. We started this journey when she was 7 (23 degrees) and started bracing when she was 8 (36 degrees). We started with the SpineCor then later added the Boston (SpineCor during the day, Boston at night), and now we have added the Providence brace (yes, if you are wondering, SpineCor for school and sports and hanging with friends, Boston around the house, and Providence when sleeping).

      She gets the best correction in the Providence.

      And during all of this we have done some CLEAR/PT (not lately) and we regurlarly visit Dr. Betz in Philadelphia.

      Today Syd is about 15-16 degrees thoracic and 11-12 degrees lumbar. The lumbar has decreased from about 18 to 11-12 the past 6-9 months since wearing the Providence brace (some slight overcorrection in the lumbar).

      I belive some key success factors with bracing are
      1. compliance - Syd is in one of the braces 23 hours per day,
      2. flexibility (that enables greater in-brace correction)
      3. in-brace correction

      With the SpineCor she was about 33 down to 21 and then with the Boston Brace it was about 30 down to 13 (when we started).

      Today the Boston in-brace correction is about 15-16 deg down to 3-5 deg in the brace. This is the thoracic. The lumbar was about 18 down to maybe -1 or -2 degrees. The Providence does some slight overcorrection of the lumbar.

      Here is my dilemna. Syd will be hitting her growth spurt soon. And while we are down to about 16 degrees out of brace, and if we continue brace wearing like we have been, will the curve progress during the next 2-3 years, and we lose everything we have gained? We have been working hard to get it down less than 10 degrees before the growth spurt to give it every possible chance to grow straight. She has been at 15-16 degrees now for over a year.

      The goal has been to get it to below 10 if possible but I assume this is only possible through bracing with some overcorrection, and while we tried it with the Providence Brace we could not get to 0 degrees or any overcorrection with the thoracic. One option is to go to different brace that can handle a higher apex (T8).

      One concern too is that we do not want to miss the opportunity to take advantage of VBS which is more effective before or early into the growth spurt. The plan now is to monitor it very closely and the first sign the bracing is not holding the curve we reconsider VBS.

      Along with this concern is that if we make it through this growth spurt, and we hold it at 15 or less and then after the growth spurt it continues to increase, and we potentially miss the opportunity for VBS. Doctors have told me that if Syd is at 15 deg or less at the beginning of growth spurt she will be "safe". I do not have that confidence, especially since Syd was once at 36 degrees.

      Questions:

      1. What brace is recommended, other than Milwaukee brace, for getting the greatest in-brace reduction of the thoracic with a T8 apex?

      2. To get the thoracic to less than 10 (or set a target for 0 degrees) I would assume Syd would need to be overcorrected by -5 or -10 degrees. Is anyone doing this? Are there any studies on it? I may start a new thread on overcorrection.

      3. Are there any studies that show a curve 30+ reduced to 15 or less through bracing will be stable or controllable during growth spurt?

      4. Are there any studies that show a 30+ curve reduced to 15 or less, and held at 15 or less during the growth spurt, and until the age of 15-16, that it will hold and remain at 15 or less without bracing? My concern is that we will do all this bracing, maybe hold it through the growth spurt, and when the brace is removed it will increase, back to 36 and beyond.

      I know there are no clear answers on all of this but I have always valued everyone's insight, opinions, experience and knowledge of existing studies/research.

      Thanks
      Mike
      Last edited by michael1960; 09-15-2012, 07:41 AM.

      Comment


      • #48
        Originally posted by michael1960 View Post
        I belive some key success factors with bracing are
        1. compliance - Syd is in one of the braces 23 hours per day,
        2. flexibility (that enables greater in-brace correction)
        3. in-brace correction
        Exactly! This is what the most basic common sense would say to everyone.
        You are right distinguishing between point 2 and 3. You may have a great flexibility and a poor correction in brace, because it was not correctly applied and you may have a great correction in brace but few flexibility as it could happen if it is forced. Probably it happened when EDF was used.. I donīt know if the flexibility achieved with the EDF Machine was only transitory.
        Certainly if most studies donīt talk about reduction in brace, we cannot expect they may talk about something as flexibility.

        Originally posted by michael1960 View Post
        3. Are there any studies that show a curve 30+ reduced to 15 or less through bracing will be stable or controllable during growth spurt?
        I know about a 13 y.o. girl with exactly that reduction in the EDF gypsum brace. I donīt know during how much time.

        Surely Milwaukee and the Gypsum brace are the most extreme of all the rigid brace.. probably Cheneau or LaBrace are more effectives.. who knows?

        Good luck with your daughter.

        Comment


        • #49
          conservative treatments

          Originally posted by michael1960 View Post
          I have not posted for some time but one of my overall concerns is whether or not we are just delaying surgery with bracing.

          Syd is now 11 yrs. old. We started this journey when she was 7 (23 degrees) and started bracing when she was 8 (36 degrees). We started with the SpineCor then later added the Boston (SpineCor during the day, Boston at night), and now we have added the Providence brace (yes, if you are wondering, SpineCor for school and sports and hanging with friends, Boston around the house, and Providence when sleeping).

          . . .

          Questions:

          1. What brace is recommended, other than Milwaukee brace, for getting the greatest in-brace reduction of the thoracic with a T8 apex?

          2. To get the thoracic to less than 10 (or set a target for 0 degrees) I would assume Syd would need to be overcorrected by -5 or -10 degrees. Is anyone doing this? Are there any studies on it? I may start a new thread on overcorrection.

          3. Are there any studies that show a curve 30+ reduced to 15 or less through bracing will be stable or controllable during growth spurt?

          4. Are there any studies that show a 30+ curve reduced to 15 or less, and held at 15 or less during the growth spurt, and until the age of 15-16, that it will hold and remain at 15 or less without bracing? My concern is that we will do all this bracing, maybe hold it through the growth spurt, and when the brace is removed it will increase, back to 36 and beyond.

          I know there are no clear answers on all of this but I have always valued everyone's insight, opinions, experience and knowledge of existing studies/research.

          Thanks
          Mike
          Hi Mike,

          I had been interested in talking to you awhile ago, but couldn't make a connection. There are several of us who have been discussing and debating the details of the conservative treatments we are trying during the "Watch & Wait" time frame. Though we are not using the same treatments, everyone is respectful of each other's choices. If you would like to join in, Tom will give you my email address.

          Best wishes,

          A Mom

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