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Thread: Setting the Record Straight

  1. #16
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    Her surgeon told me she is back in the general population for risk of all future back issues.

    I call that a cure. What do you call it?

    To further clarify, she is not predisposed over and above an unfused person to any back issues either from having the scoliosis (presumably because it was surgically corrected early, but I don't know that) or from the fusion (because of where is was fused, I do know that because he stated it explicitly). That is my understanding of what I was told. I had it repeated because it sounded crazy. It still sounds crazy but I'm not a surgeon.
    Last edited by Pooka1; 04-24-2009 at 10:35 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."

  2. #17
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    Quote Originally Posted by Pooka1 View Post
    What do you call it?
    I call it and premature and lacking proper caution.

  3. #18
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    Note here I am NOT claiming surgery represents a cure for everyone. I certainly don't KNOW that and therefore can't claim it.
    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. #19
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    Quote Originally Posted by CHRIS WBS View Post
    I call it and premature and lacking proper caution.
    I don't know why the surgeon is so sure. It does sound premature. He might be wrong. But I have no basis whatsoever to claim he is wrong. He has his experience and knowledge of research in this area. I don't.

    I don't make the news, I just report it. And in this case, I have reported it accurately.
    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. #20
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    Quote Originally Posted by Ballet Mom View Post
    Pooka1,

    I have read this forum for over a year now and lots of the postings from the history as well. I haven't requested posting privileges until recently because of the nasty treatment of posters by certain people on this forum whom you may recognize. What you consider to be "conversational pressure" I consider to be ideological brownshirt tactics. I can now understand what Galileo went through, it wasn't the fault of the Catholic Church, it was the received wisdom of the scientists of that day who felt they could ridicule and squash any other ideas that fell outside their belief system.

    My daughter was diagnosed at twelve with a 35 degree extremely rapidly progressing curve, Risser 0 and premenarchal. Ten months before she was screened by the nurse at school and noted for possible scoliosis, her pediatrician (who has a specialty in orthopedics) had checked out her spine thoroughly for scoliosis, went down her back vertebrae by vertebrae, with me watching, and said she was straight. Ten months later she had a 35 degree curve. We were told that she would probably progress to surgery, but was given a Charleston bending brace. My daughter is now three inches taller, fourteen years old at the end of this month and five months post-menarche. The orthopedist thinks her curve is probably going to stay where it is at this point, even though she will continue wearing a brace for the next year at least. The latest measurement of her upper curve, with 24 hours out of brace, was 32 degrees.

    What happened to my child doesn't fit in with your pre-conceived notion that braces don't work. So therefore, I guess you'll have to accept that it was a miracle that occurred.

    Please don't respond that the curve would have stopped on its own naturally at that point. The curve kept noticeably progressing during the weeks it took to get the brace made and shipped from Florida, as I watched her shoulder move up and her scapula protrude more every night at ballet class. I know for a fact she would have been in surgery within months if she hadn't been given that brace. What she had going for her was she's thin, has a very flexible spine, and had great results with brace correction....she also continued to do ballet six days a week.

    I really don't understand why you are pushing so hard to try to convince everyone that bracing doesn't work. If I hadn't been allowed a brace for my child and told to just let her progress to surgery, when bracing works for a significant number of people, I would have been outraged. No medical treatment works for 100% of patients. It doesn't mean the doctors don't try.

    For an investment of $3500 that brace has saved the medical system hundreds of thousands of dollars. If she, for some reason, continues to progress when she's an adult, I'm happy that she's been given the chance to continue her ballet now, and to have a chance for a flexible scoliosis surgery in the future.

    So please, for everybody's sake...keep your proselytizing for your faith under control. It is as offensive to me as "God bless you" is to you.

    And thank you Joe for your efforts with scoliosis screenings in the school system. That was a Godsend for my daughter. It is much appreciated.
    Ballet Mom,

    Good luck with your daughter. I truly hope that she doesn't progress in the future. But I don't think you can declare her treatment a success untill WELL into the future...10, 15 years or more. As a teenager I was also deemed a success. Not that I don't think bracing can't work, but at this point you're just not sure yet.
    __________________________________________
    Debbe - 50 yrs old

    Milwalkee Brace 1976 - 79
    Told by Dr. my curve would never progress

    Surgery 10/15/08 in NYC by Dr. Michael Neuwirth
    Pre-Surgury Thorasic: 66 degrees
    Pre-Surgery Lumbar: 66 degrees

    Post-Surgery Thorasic: 34 degrees
    Post-Surgery Lumbar: 22 degrees

  6. #21
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    thank you

    Joe, thank you for your time, effort and dedication re scoliosis.

  7. #22
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    I second lady. But also have to say, I cannot believe this thread turned out to be like the rest. Where is the support, on any level?

  8. #23
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    I guess I'll put my two cents in on this subject, although coming from a complete amature on the subject...

    Bracing didn't work for me, not one bit. I wore a brace since age 2 and wore it for 11 years and my curve grew progressivly worse, until I was over 100 degrees at age 12.

    Thats not to say that bracing won't work for some people. I think there is so much unknown about what causes scoliosis that we simply have little way to help treat it. Which may be why it works for some, but not others.

    The best I think we can say about bracing is that, for some people, it will halt the curve. Which is a good result and hopefully it stays that way. It doesn't always, so it does need to be watched at all times, but the hope is it will stay.

    I think that some people come in and are so happy with the treatment they are going through, and how much better they are feeling, that they want to share their joy, but it may come out the wrong way, as a push for that type of treatment.

    As a community we do need to be supportive of each other, and our successes. We also do need to be wary of people promising the moon to those that are vulnerable and seeking answers.

    Just my two cents...

    Can't we all just get along?

    Brad
    Surgeries July 26th & August 3rd 1983 (12 years old)
    Still have 57 degree curve
    2 Harrington rods
    Luque method used
    Dr David Bradford
    Twin Cities Scoliosis Center
    Preop xray (with brace on)
    Postop xray

  9. #24
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    Quote Originally Posted by Qikdraw View Post
    Can't we all just get along?
    Or at least can't we all just try to make sense?
    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. #25
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    Praise Song for the Day

    The propensity to title my written sharings, will not go away and I no longer even try to avoid it (please bear with me here).

    Praise Song For The Day (my offered title) as many know, is a free verse sort of poem in 14 unrhymed tercets with a single finish - written by Dr. Elizabeth Alexander from Yale University, and presented on inauguration day for fellow poet President Obama, and the world. Video via youtube: http://www.youtube.com/watch?v=nH6fC3W3YvA and text version here: http://www.poets.org/viewmedia.php/prmMID/20545

    The genre, defined here: http://www.britannica.com/EBchecked/...71/praise-song

    I am pleased to see it on youtube along with other notable leaders. I am stunned by the lack of knowledge and disrespect shown in some comments (obviously made without research). I keep meaning to leave a supportive one there.

    A line from this poem often comes to my mind: We need to find a place where we are safe ...


    I’m so grateful for this thread, thanks again Joe – thanks because, the sharing of our collective stories/information in this forum, across all categories, is all the better for what you have shared with us in your posting of Setting The Record Straight. I nominate it for #1 posting in the entire history of NSF forum. As need may arise, I will refer to your wisdom both here in forum, and think it may serve good purpose even outside of forum. Admirable leadership qualities shown here (by one of our own), from my perspective.

    I read your posting daily, and review it as reference (along with comments added) before posting. The reason I do that is because your posting/essay covers (in a unique way) everything I personally have experienced when communicating with others (both in and out of forum). In fact, your thoughts here have even personally inspired, led, & helped me, greatly, in a group meeting today where I am employed.

    In forum, your posting supports both the wealth of truly factual material we may find here and it addresses the truly counter-factual (if not downright hostile) information that we may also be tested mightily (to nearly wits end) to experience. You address these things in a calm, yet firm and controlled manner which holds attention of those with purpose toward true altruistic sharing of a serious condition, in a place seriously created for us (by one of our own) towards sharing our individual experience, information, concerns, remedies, and inspiration regarding both our individually unique and yet collective conditions. Thank you for the freedom and safe haven you have given and prepared for us to do that, through Setting The Record Straight.

    And, as I have come to understand, the NSF forum in its entirety, is often watched by many non-members including numerous professionals in the medical/research fields. Some non-members watch in their continuing research of information for themselves and/or a loved one. Other professionals in the healing arts watch to gather observational facts relative to first hand patient information that seldom surfaces elsewhere … information, which may help inspire our altruistic healers in search of remedy for many good souls (approximately 2-3% in number of the worlds population, equating to approximately 180 million people world wide, each a valuable (and often times suffering) human being. This is noteworthy I believe as both our fellow patients, and our healers also deserve to see and hear us amid an atmosphere of respect vs. one of hostility.

    Greatly admire any writing style that offers what yours has offered here Joe. The Art of Happiness by the Dalai Lama, comes immediately to mind (in my personal experience), as well as publications by Joel Olsteen, for sake only of brief comparison (of both professional style and bottom line, real life, conclusions).

    If you were to write a book – then based on just the information contained in your compelling essay/posting alone (and the manner in which it has been presented), I for one would be looking for it, and would purchase it (preferably an autographed copy). If you do write one - please do not let anyone edit your style out of existence (as some editors are prone to do) – for I believe your style touches many (regardless of Faith or lack thereof which may be seen as a pseudo faith unto itself), in a way that the majority can (and does) both understand and truly appreciate.

    While my observed and repetitive acknowledgment and gratitude (for such information as is posted by yourself or anyone else here in forum), has been heralded , by a select few, as sucking up … I would prefer to observe – I simply have been moved to lift my voice in support of your guidance, as have other brave souls here in forum, as we share a collective and challenging learning experience regarding all forms of scoliosis and respective remedy which has defied complete explanation and/or cure since the days of research by Hippocrates (a Google search of his work in this area is most interesting).

    Again, my sincerest thanks and gratitude, just for you being you. As I come across such brave souls as yourself, I am moved in spirit to say – our forum and the world at large – a better place, for your place within it.

    Believe your words and thoughts have made some necessary and welcomed changes in our forum lives.

    On a humorous note – should it ever be needed (and I think there is good cause to believe it may not be) …. will be Filing this in the signature idea folder. Or maybe just a standard reply for some of the things that have been addressed, would be less bombastic – to wit:

    If your spirit moves you to flame
    Please read Setting The Record Straight
    At least once – if not again

    http://www.scoliosis.org/forum/showthread.php?t=8765


    Apologies for my long sharing - seem not to be able to edit out one word. The good news Is, I believe I may have satisfied my need of expressed gratitude for the good people here. My sincere wish that other adult Spinecor patients (and other friendly folk) will share with me here:

    http://www.scoliosis.org/forum/showthread.php?t=8759

    and here:

    http://www.scoliosis.org/forum/showthread.php?t=7733

    Last edited by mamamax; 04-24-2009 at 08:42 PM.

  11. #26
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    Pooka1:

    If it wasn't the Catholic church then why did they apologize for it?

    Because they have some humility, tact and class, which is sadly missing in many people these days. I'm sure they thought they were trying to nicely shut down the squealers and squawkers out there, but I'm sure it hasn't had any effect at all.

  12. #27
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    This is a scoliosis forum. Posts about religion are now forbidden. All future posts that address this topic will be removed.

  13. #28
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    Quote Originally Posted by LindaRacine View Post
    This is a scoliosis forum. Posts about religion are now forbidden. All future posts that address this topic will be removed.
    ALL posts.
    Last edited by Pooka1; 05-08-2009 at 04:11 PM.
    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. #29
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    Quote Originally Posted by NMFB View Post
    i would like to add three thoughts to this forum regarding the adult use of the SpineCor.

    Read and research every article, posting, study, and web site, written since 1999 before purchasing.
    Keep in mind that this brace was invented in Canada and is manufactured in the UK.
    Put off purchasing the brace until you have had time to think about it, even if it means making two trips.
    Dear NMFB - Welcome to the National Scoliosis Foundation Forum. Perhaps many here would like to better understand why you would join, and make this your first posting. The President of NSF (who started this thread) speaks well of this brace, in fact - one of his children was successfully treated with this brace. Adults have been using it for about five years. It is currently my treatment of choice, and i am finding it most satisfactory. Certainly, there is no one treatment that works for everyone. What was your personal experience, that moves you to make these comments?

  15. #30
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    Quote Originally Posted by NMFB View Post
    i would like to add three thoughts to this forum regarding the adult use of the SpineCor.

    Read and research every article, posting, study, and web site, written since 1999 before purchasing.
    Keep in mind that this brace was invented in Canada and is manufactured in the UK.
    Put off purchasing the brace until you have had time to think about it, even if it means making two trips.
    I love this post! Very mysterious, got me thinking.
    The problem is, well, I think I read every paper I could find (and I looked hard) on the spinecor. So I'm not sure what I missed. No idea what you may be alluding to.
    Regarding the country of invention and manufacture. I guess the relevance of that escapes me.
    WRT the two trips, well, for adult use, it seems you might be able to tell right off the bat if pain is reduced, for kids, I think it would be good to look at the inbrace xrays before buying.

    But, I guess we're going to need more details. Just what are you saying?

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