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Thread: New and confused

  1. #16
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    Wait a Minute - back up?

    Quote Originally Posted by Pooka1 View Post
    Overall, most curves by far do NOT reach surgical territory.

    Curves that are large at a low Risser usually progress. Some large curves at low Risser hit surgery territory and stay there for decades. Though that isn't usual, there are at least two players in this microcosm here whose curves did just that.

    But the most important point to make is that criticizing waiting and waiting is not rational unless there is some conservative approach that has a better track record. I'm unaware of what that might be.


    You know maybe the literature suggests that most curves do not reach surgical territory - I don't know, haven't read it all. Let's presume this is true - even if curves do not reach surgical territory, that does not mean that they do not adversely effect quality of life (pain and such).

    And I'm not sure we can trust the literature either. Is there some life-long tracking thing for everyone diagnosed that I'm not aware of?

    I wasn't supposed to progress, but I did. And I seem to see that all the time right here in forum with others echoing the same sentiment.

    So why would anyone want to watch and wait when we find so many reports of things that can help? Granted, we also have no life long studies of things like Schroth and bracing - but we have plenty of anecdotal reports from parents (real people) right here in forum. I don't think we should ignore or dismiss these things just because the literature may not have caught up to the reality.

  2. #17
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    Quote Originally Posted by mamamax View Post
    Wait a minute ...


    So why would anyone want to watch and wait when we find so many reports of things that can help? Granted, we also have no life long studies of things like Schroth and bracing - but we have plenty of anecdotal reports from parents (real people) right here in forum. I don't think we should ignore or dismiss these things just because the literature may not have caught up to the reality.
    THANK YOU!!! So often it seems some are more interested is arguing their point than in offering supportive info for those looking for some help. I'll admit, it's been a crazy 2 weeks and I am still a little bit in the "I should have caught this sooner, Bad Parent" stage and have been a bit aggressive in my posts. None-the-less, this beautiful young lady who is my daughter needs my help. Regardless of the posts that I expect disputing the efficacy of this treatment, here it goes. We hooked up with Spinal Dynamics in Milwaukee so you know what that means-Schroth with RSC (actually a bit of a hybrid of this brace). Awesome people with an incredible orthotist.

  3. #18
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    Quote Originally Posted by Pooka1 View Post
    I suggest you might like this scoliosis group much better than NSF...

    http://www.scoliosis-support.org/index.php

    It's really quite excellent for support purposes.
    That was a little .... harsh? I think our new member is where she wants to be - though she may want to join the other one also .. some of us do.

  4. #19
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    Quote Originally Posted by Pooka1 View Post
    I suggest you might like this scoliosis group much better than NSF...

    http://www.scoliosis-support.org/index.php

    It's really quite excellent for support purposes.
    Do you argue your points of view as critically and relentlessly there also????

  5. #20
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    Quote Originally Posted by bbrian35 View Post
    THANK YOU!!! So often it seems some are more interested is arguing their point than in offering supportive info for those looking for some help. I'll admit, it's been a crazy 2 weeks and I am still a little bit in the "I should have caught this sooner, Bad Parent" stage and have been a bit aggressive in my posts. None-the-less, this beautiful young lady who is my daughter needs my help. Regardless of the posts that I expect disputing the efficacy of this treatment, here it goes. We hooked up with Spinal Dynamics in Milwaukee so you know what that means-Schroth with RSC (actually a bit of a hybrid of this brace). Awesome people with an incredible orthotist.
    You are NOT a bad parent! I understand the feeling though - but remember, none of this is your fault. Other parents here have also chosen Schroth - I haven't seen any bad reports. If you search the forum you should be able to find other parents here to network with. I hope you will keep us posted on your journey and I wish you and your beautiful daughter all the very best of success. Don't worry about loosing it once in awhile in forum - I think we all do that occasionally.

  6. #21
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    Quote Originally Posted by MitoMom View Post
    Thanks for the stress buster of the evening. John, the kyphoscoliosis resident is going to take the web site into his special ed vocational classroom tomorrow to entertain his friends. As for me, I'll probably share it with friends and family.

    As for the older posts, I read those so I could understand what the current post was about. Some were way out there.

    And blast you, now I've got that dumb hamster dance song in my head My husband is singing it too. Help!
    That hamster dance is legendary

  7. #22
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    I don't know if you've stumbled across the SEAS group, over in Italy. Their general protocol, if I remember correctly, is exercise for smaller curves, braces for moderate curves, and surgery for large curves. That makes sense to me.

    We effectively "waited and watched" with my son because we foolishly believed our doctor when he said that he had finished his growth spurt and had managed to avoid surgical territory. 1 year and 24 degrees of progression later (oops!) he was well into surgical territory with a 50+ degree curve.

    Realistically, there probably was nothing we could have done that would have changed that year for us. His curve is so high that bracing is likely ineffective, and exercise just does not seem to hold a rapidly progressing curve. But I would be kicking myself less if I'd at least tried something.

    For a small curve, with a minimal investment (I think Dingo described the exercise using a simple stretch band) you could try the torso rotation. There's something called side-shifting which is free. I described it somewhere in the last few days, if you want to look at my posts. Neither of these is likely to hurt and it's probably worth it on the chance that they help.

  8. #23
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    Quote Originally Posted by mamamax View Post

    You know maybe the literature suggests that most curves do not reach surgical territory - I don't know, haven't read it all. Let's presume this is true - even if curves do not reach surgical territory, that does not mean that they do not adversely effect quality of life (pain and such).
    That's a good point. I would like to know how many people get surgery for pain only, progression only, and for progression plus pain. Reading testimonials, I think progression seems to be involved in most surgeries but I don't know that.

    And I'm not sure we can trust the literature either. Is there some life-long tracking thing for everyone diagnosed that I'm not aware of?
    An excellent point that is routinely ignored. There are some players here who think the literature is far better than it actually is. There is a range... something like reporting on whether a patient did or didn't have a revision is one thing and can be known with certainty; Reporting on surgical rates in an uncontrolled bracing study is just not publishable in my little opinion. I also think it is unethical to do bracing studies when you can't in principle find an answer one way or the other. Braist is the only ethical bracing study that I am aware of.

    I wasn't supposed to progress, but I did. And I seem to see that all the time right here in forum with others echoing the same sentiment.
    Maybe Linda knows but I think the claim is that including those patents it's still up around 90% who never progress to surgery territory in their lifetime. It seems fair to suggest that besides viral infections treated with antibiotics, scoliosis is the most uselessly overtreated condition out there given the prevalence of conservative approaches from both surgeons and others. It's an uncanny situation where there is no real evidence for a standard of care as Lori Dolan points out.

    So why would anyone want to watch and wait when we find so many reports of things that can help?
    As far as we know, most kids who are treated with braces either were not going to progress or will progress anyway. If some kids are helped by bracing, and that is certainly possible even with the data in hand, it is not a large group and has eluded detection. I think a surgeon on that POSNA lectures series mentioned ~10% who might avoid surgery due to bracing. That means ~90% will have suffered with a brace, sometimes for years, for no good reason. This is no benign treatment.

    And I think a case can be made with the present data set that some of those 10% brace "successes" only had surgery delayed, not avoided. When we look at the recovery trajectories of kids versus adults, in the age of pedicle screws, that is not a good thing in my opinion. Recall those two low term studies about revision rates... it was about three fold higher in the adult patients, compared to the kids but still relatively low (~25%) and with the same/similar instrumentation.

    And while you will see surgeons prescribing braces still despite no good evidence, I don't think you will find any surgeon who thinks PT is effective at all for halting progression. Look at Dr. Samdani on the torso rotation video in the face of a 6* reduction in that little girl. And he STILL said that. This is his game.

    If I'm missing something or am misunderstanding something please edify me.
    Last edited by Pooka1; 01-12-2010 at 05:36 AM.
    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."

  9. #24
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    Quote Originally Posted by bbrian35 View Post
    I'll admit, it's been a crazy 2 weeks and I am still a little bit in the "I should have caught this sooner, Bad Parent" stage and have been a bit aggressive in my posts. None-the-less, this beautiful young lady who is my daughter needs my help. Regardless of the posts that I expect disputing the efficacy of this treatment, here it goes. We hooked up with Spinal Dynamics in Milwaukee so you know what that means-Schroth with RSC (actually a bit of a hybrid of this brace). Awesome people with an incredible orthotist.
    Welcome!

    Please don't beat yourself up over not noticing your daughter's Scoli sooner. It is hard not to beat yourself up. We've all done it. Try to focus on the present and not the past. Focusing on the past won't change anything. Trust me, I know, I've been there, done that. My daughter's Scoli wasn't diagnosed until it was already 36* and she had a Scoli check yearly!

    I would suggest that you get at least a second opinion. It never hurts. Trust your instincts. Keep your daughter involved with what's going on--it is her body and she deserves to know (on an age appropriate level, of course) what's going on.

    Hang in there. You are not alone.

    Mary Lou
    Mom to Jamie age 21-diagnosed at age 12-spinal fusion 12/7/2004-fused from T3-L2; and Tracy age 19, mild Scoliosis-diagnosed at age 18.

  10. #25
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    Enough already

    Pooka, Please, please, please find a different thread for your argument. And to all those others sharing their stories, info, and supportive comments, thank you so very much.
    Last edited by bbrian35; 01-12-2010 at 06:35 AM.

  11. #26
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    bbrian35,

    If you have any particular questions regarding the Rigo-Cheneau brace which you do not find answered on the forum already, please feel free to PM me. My daughter has been wearing the brace for one year, full-time, with great success. She does not do Schroth therapy so I cannot help you there.
    mamandcrm

    G diagnosed 6/08 at almost 7 with 25*
    Providence night brace, increased to 35*
    Rigo-Cheneau brace full-time 12/08-4/10
    14* at 10/09 OOB x-ray
    11* at 4/10 OOB x-ray
    Wearing R-C part-time since 4/10
    latest OOB xray 5/14 13*
    currently going on 13 yrs old

    I no longer participate in this forum though I will update signature from time to time with status

  12. #27
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    To all of the kind offers to PM those who have responded or PM'd me, I will get back to each of you when I have a bit of time. Thank you to all. Today I am building a set of stall bars for the exercise room. Initial brace fitting is next week. Here we go!! My daughter has such a great attitude so far and I am finding her to be quite strong, resilient and amazing!

  13. #28
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    Quote Originally Posted by bbrian35 View Post
    Pooka, Please, please, please find a different thread for your argument. And to all those others sharing their stories, info, and supportive comments, thank you so very much.
    Hi Brian...

    Welcome. I hope you find help here.

    I have to say that, when the first time someone posts to a forum, it's got nothing to do with scoliosis, but is sort of a rehash of all the battles that have gone before, one has to wonder what your true motivation is. If you really want to connect to only those who agree with you, Pooka's advice above is probably appropriate.

    Regards,
    Linda

  14. #29
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    Or, you could stay here and use the ignore feature to filter out posters you'd rather not read. IMO, you'd be missing something by filter out Pooka's posts, but you are free to do so.

  15. #30
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    I'm new to the forum but have been in the scoliosis world for a while. There was a very interesting study/commentary published by Stephano Negrini in 2006 in the online journal Scoliosis. He describes the social acceptability of scoliosis and various treatment options. One of the most interesting findings was that with only a 25% risk of progression, 87% of patients/families would want to do some kind of exercise for treatment. The main idea, I think, is that families and patients feel better about their condition if they feel like they have some kind of control.

    So, BBrian35, welcome to the forum. I can tell you that you are not alone in your feelings as a parent. You will be your daughters best advocate. Approach any forums with some caution. Educate yourself and your daughter on what's happening. Ask questions. Work to accept that your daughter has scoliosis. That doesn't mean you surrender to it. It just means that looking for a treatment that will 'cure' or erase it will drive you crazy.

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