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Thread: New and confused

  1. #1
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    New and confused

    I am new to this forum but somewhat disenchanted by the resistance to and contradicting nature of responses by some members to the wonderful, personal success stories of some patients to therapies they chose that seem to have worked for them. They just don't seem to want to believe or acknowledge anything else as being successful. It's disheartening to newbies. It seems any time I read a post about this brace or that, Schroth method, or any number of methods where someone has reduction in Cobb angles, you can bet that certain posters will eventually post their disagreement to or dispute the success of that approach and suggest that any change is most likely not actual or lasting. I appreciate hard data, but like I said, you can almost predict who is going to reply with a not-so-positive post. What's up with that?? Like I said, I'm new with a daughter who has just been diagnosed. This forum is great and very informative. I will be posting my daughter's specifics soon with degrees and chosen method of treatment. I have read almost everything on this forum. I just don't understand the motive of these few individuals. There is some data to support non-surgical treatment and I am hoping to find success in this manner. We are leaning toward Schroth and Cheneau(sp?), but I read a post somewhere that someone wouldn't believe in this unless there was at least 90 years of supportive data. Just when you've read some success stories and start to feel the decisions you've made with the data you've been able to find are a good choice, a follow-post seems to tear it apart. Kind of a bummer!

  2. #2
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    I think the motivation of those posts/posters is good. Because there is no effective cure for scoliosis, there are lots and lots of unscrupulous practioners out there promising everything and delivering very little. It's enough to make anyone suspicious.

    I think that exercise/bracing can be effective in slowing progression (although I can't prove it ), but I do understand the caveat that they are not "permanent" treatments. Everything I've read about exercise suggests that you must continue to exercise for the rest of your life in order to maintain whatever benefit you gain.

    Because of the sorry state of the research, though, there simply is not hard evidence that any of these things work. (Likewise, there's no evidence that they *don't* work.) What I've been doing to try to sort through the data is to identify those methods where a few cases of documented *reduction* in curves is seen (the curve has to be 35 degrees or more, and the reduction has to be at least 10 degrees and last for as long at the treatment is applied).

    That's not to say that one should expect a reduction in a curve - I think that's a pretty rare occurrence. But my thinking is that, if a treatment can reduce a few curves, it probably can keep many more from progressing.

    Because my son is over the age for bracing (he's 21 with a curve somewhere in the mid 50s), I'm only looking at exercise treatments, but I suspect you can find similar cases in bracing.

    Good luck with your search!

  3. #3
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    hdugger makes some very salient points.

    I hope you daughter's curve stops or regresses, whether or not you are doing an alternative treatment. Watching and waiting is extremely effective for the vast majority of cases... only ~10% reach surgical territory. This is why the statements we hear from time to time about "all big curves start out as small curves" is completely inane.

    Good luck.
    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."

  4. #4
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    In case you don't make it to the article, it's important to know that there has not been any long term follow up on the effectiveness or long term risks of this surgery. Here's the relevant information from the article:

    "Dr. David Polly, chief of the spine service in the Department of Orthopaedic Surgery at the University of Minnesota, acknowledges the excitement surrounding minimally invasive surgery, but points out that so far, doctors have demonstrated only short-term results, such as shorter hospital stays, less pain, decreased blood loss and quicker recoveries.

    Polly, who also serves on the board of the Scoliosis Research Society, wonders whether there will be any long-term benefit to sparing muscle tissue. Once the spine is fixed straight, it won't bend where the metal rods are in place, he points out, "so we don't know if it's important or not" to preserve muscle.

    The data are just arriving on longer-term, post-operative effects of minimally invasive scoliosis surgery. Dr. Neel Anand, director of orthopedic spine surgery at Cedars-Sinai Spine Center in L.A., provided The Times with data last week that he will present at the SRS' international meeting next month showing that a study group of 24 patients who had curves averaging more than 42 degrees maintained deformity correction one year after surgery to an average of 6.5 degrees. Anand says these findings show "we absolutely can maintain good correction and get good correction." (Anand is a paid consultant for Medtronic and receives royalties for his contributions to the design of the screws used in the minimally invasive surgeries.)"

  5. #5
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    bbrian35 -

    None of us have any definitive answers about what treatment will work best for whom - nor do we have any long term studies to support our opinions (but we all have some on the way). We all make our individual decisions, and go from there.

    If you've done a lot of forum reading before joining, you can see we're a big family - and a colorful one too! Whatever treatment you decide on, there will be people here to support you and your daughter. Like most big families, not everyone agrees with each other all the time - but it's a hard place to walk away from ;-) We're a work in progress and learning new things everyday.

    I wish you and your daughter all the best.

    Sincerely - the controversial adult bracer (Spinecor).



  6. #6
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    Quote Originally Posted by scoliosisdoctor View Post
    Hello bbrian35,
    I can understand your confusion and frustration. I have had a great deal of success with a new minimally invasive procedure that straightens out even the most severe curvatures.
    Here is an article in the Los Angeles Times that you might find helpful.
    http://www.latimes.com/features/heal...,6082394.story
    Just to give you a bit of information about MISS - minimally invasive spine surgery:
    90% + of all spine surgeries are STILL open spine!
    MISS are less risky because there are small incisions, less blood loss, no ICU post surgery, quick recoveries- patients are standing up straight, walking around pain free on Tylenol shortly afterwards.
    Hi Doc - did you answer our questions in the other thread yet? This is starting to look like fly-by advertising.
    Last edited by mamamax; 01-11-2010 at 07:11 PM.

  7. #7
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    New and confused

    I agree with BBrian35. I am new here too (2 weeks).

    Many of the posts here are helpful.

    But there are some threads where the arguments go on and on without end. Yes, we all want proof and testing and controls to make a valid experiment. But that's not going to happen any place on this earth because no two kids or adults are exactly alike, with exactly the same problem and the same support at home, etc. And yes, debate and questioning is healthy if it helps others understand.

    For a new person to read these arguments is a huge turn off and not a good representation of what this forum is for. I even went so far as to ask a moderator how to turn off those threads where there are arguments. Yes, I know I can turn off people but I didn't want to because there maybe something good in other threads that will help my situation.

    So for now, I'll keep reading the "new posts" only and when I see it's a post on a thread that contains arguments that go on and on, I'll add to my list of threads to avoid.
    Thoroughly disgusted with people in this group

  8. #8
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    I've been here since April of last year. The postings over the last two weeks are milk toast in comparison. We have come a LONG way in polishing our discussion skills.

    I like to think we are getting better at being sensitive to each other needs every day.

    When the going really gets tough - we have a resident research scientist who helps us with some much needed stress relief.

    Yes, I'm talking about the legendary ..... Hamster Dance: http://www.webhamster.com/

  9. #9
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    Post of the Month nomination

    Quote Originally Posted by mamamax View Post
    I've been here since April of last year. The postings over the last two weeks are milk toast in comparison. We have come a LONG way in polishing our discussion skills.

    I like to think we are getting better at being sensitive to each other needs every day.

    When the going really gets tough - we have a resident research scientist who helps us with some much needed stress relief.

    Yes, I'm talking about the legendary ..... Hamster Dance: http://www.webhamster.com/
    Nominated


    ....
    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."

  10. #10
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    I love being nominated
    Last edited by mamamax; 01-11-2010 at 07:56 PM.

  11. #11
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    Quote Originally Posted by Pooka1 View Post
    hdugger makes some very salient points.

    I hope you daughter's curve stops or regresses, whether or not you are doing an alternative treatment. Watching and waiting is extremely effective for the vast majority of cases... only ~10% reach surgical territory. This is why the statements we hear from time to time about "all big curves start out as small curves" is completely inane.

    Good luck.
    Yea, so I'll just sit here and watch and wait....yea.....hmmm.....and what about the 88-100% chance of progression I read on Risser 0? Or is that some data someone who doesn't know what they are talking about at Children's Hospital in Milwaukee (No. 5 in the nation for children overall) decided to throw at me?? I have seen typical chance of progression figures elsewhere, but I'll just watch and wait........yea........right!

  12. #12
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    Quote Originally Posted by bbrian35 View Post
    Yea, so I'll just sit here and watch and wait....yea.....hmmm.....and what about the 88-100% chance of progression I read on Risser 0? Or is that some data someone who doesn't know what they are talking about at Children's Hospital in Milwaukee (No. 5 in the nation for children overall) decided to throw at me?? I have seen typical chance of progression figures elsewhere, but I'll just watch and wait........yea........right!
    You're frothing.

    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.
    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. #13
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    Quote Originally Posted by MitoMom View Post
    But there are some threads where the arguments go on and on without end.
    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.
    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. #14
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    Quote Originally Posted by bbrian35 View Post
    I am new to this forum but somewhat disenchanted by the resistance to and contradicting nature of responses by some members to the wonderful, personal success stories of some patients to therapies they chose that seem to have worked for them.
    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.
    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."

  15. #15
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    Dec 2009
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    36

    Talking I love the Hamster Dance!

    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!
    Thoroughly disgusted with people in this group

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