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Thread: National Scoliosis Foundation

  1. #61
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    Quote Originally Posted by burdle View Post
    I would indeed like to contact Jo O'Brian and may well do so - especially as I can see nothing about VBT or VBS mentioned.
    Although it used to be hopping, the adolescent section on this group is essentially dead. There are thousands of post about the state of bracing, PT, and some on fusionless surgery. I imagine new parents come here and read some of the voluminous back and forths and have their questions answered. They are always the same ones and with one goal.... avoiding surgery.

    Many years ago, a child here had VBS. The VBS posts were somehow not encouraged... I don't have the full story. I do know at the time Joe was supporting the Spinecor brace which didn't pan out. So that parent and few others took the VBS and now VBT discussions to Facebook. I am glad of it for at least the reason that parents won't be subject to the lay misinformation that was routinely posted in the research section by some parents without research training.
    Last edited by Pooka1; 01-19-2017 at 08:42 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. #62
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    Quote Originally Posted by Pooka1 View Post
    Although it used to be hopping, the adolescent section on this group is essentially dead. There are thousands of post about the state of bracing, PT, and some on fusionless surgery. I imagine new parents come here and read some of the voluminous back and forths and have their questions answered. They are always the same ones and with one goal.... avoiding surgery.

    Many years ago, a child here had VBS. The VBS posts were somehow not encouraged... I don't have the full story. I do know at the time Joe was supporting the Spinecor brace which didn't pan out. So that parent and few others took the VBS and now VBT discussions to Facebook. I am glad of it for at least the reason that parents won't be subject to the lay misinformation that was routinely posted in the research section by some parents without research training.
    Would you not expect to see some reference to VBT on the NFS website?

  3. #63
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    Quote Originally Posted by burdle View Post
    Would you not expect to see some reference to VBT on the NFS website?
    There are a few posts. It just depends on what people post. I direct people to the FB page if they want info on VBS and VBT.
    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. #64
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    Quote Originally Posted by Pooka1 View Post
    There are a few posts. It just depends on what people post. I direct people to the FB page if they want info on VBS and VBT.
    Hi,

    I meant on the NSF website itself - to alert patients to all the options

  5. #65
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    Quote Originally Posted by burdle View Post
    Hi,

    I meant on the NSF website itself - to alert patients to all the options
    I am saying that VBS posts were not encouraged or highlighted or promoted or whatever in the past for whatever reason. That explains why they are not here now.
    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."

  6. #66
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    Quote Originally Posted by burdle View Post
    I would indeed like to contact Jo O'Brian and may well do so - especially as I can see nothing about VBT or VBS mentioned.
    Joe is not a medical professional, so I wouldn't expect much in the way of professional writing on treatments.
    Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Dilbert
    I'm sarcastic... what's your super power? --Unknown
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    Surgery 2/10/93 A/P fusion T4-L3
    Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation
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  7. #67
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    Quote Originally Posted by LindaRacine View Post
    Joe is not a medical professional, so I wouldn't expect much in the way of professional writing on treatments.
    He backed the wrong horse (Spinecor). I am not sure why he was not supportive of VBS in addition to Spinecor.
    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."

  8. #68
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    Quote Originally Posted by Pooka1 View Post
    He backed the wrong horse (Spinecor). I am not sure why he was not supportive of VBS in addition to Spinecor.
    I don't think we know if he "supports" VBS or not. And, as I said, he's not a medical professional so his opinion is worth about the same as you and me. As someone who has had multiple surgeries, I suspect he probably has at least some passing interest in any procedure that reduces the need for fusion.
    Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Dilbert
    I'm sarcastic... what's your super power? --Unknown
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    Surgery 2/10/93 A/P fusion T4-L3
    Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    If you've signed up and are having trouble posting, please check your spam folder. An email was sent to the email address which you subscribed. You have to follow the instructions in that email. Done that and still having trouble posting? Contact Joe O'Brien at jpobrien@scoliosis.org.

  9. #69
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    Quote Originally Posted by LindaRacine View Post
    I don't think we know if he "supports" VBS or not. And, as I said, he's not a medical professional so his opinion is worth about the same as you and me. As someone who has had multiple surgeries, I suspect he probably has at least some passing interest in any procedure that reduces the need for fusion.
    Yes but NSF is about awareness- so surely some mention of a new surgical technique should be made somewhere on the website?

  10. #70
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    Quote Originally Posted by burdle View Post
    Yes but NSF is about awareness- so surely some mention of a new surgical technique should be made somewhere on the website?
    This forum is driven by whoever chooses to post. Joe does not take any control over content with few exceptions.

    There was an extreme situation where two other members were taking issue with my scientific posts and Joe reached out to each of us on the phone. Though I disagree with coddling anti-science positions and I am not sure why he needed to call me also, he reached out to all three of us asking to talk by phone.

    This forum is poster led which is a double-edged sword as we have seen. Having a "Research" section in a largely lay forum is like yelling "FIRE!" in a crowded theater in my opinion.
    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."

  11. #71
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    Burdle you can post about VBS and VBT if you like. There is no prohibition against it.

    As I have said, if someone asked about it, I direct them to the Facebook site where many experienced people post. They used to post here. They post there and not here for a reason.
    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."

  12. #72
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    Quote Originally Posted by Pooka1 View Post
    Burdle you can post about VBS and VBT if you like. There is no prohibition against it.

    As I have said, if someone asked about it, I direct them to the Facebook site where many experienced people post. They used to post here. They post there and not here for a reason.
    Sharon... Burdle is talking about the non-forum part of the NSF website.

    Burdle... if Joe had a medical professional who wrote content for the NSF website, then a section on treatments would be appropriate. I think most people would find little value to a lay person writing about various treatments. There are plenty of websites that do that. You might try SpineUniverse or Spine-health.com.

    --Linda
    Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Dilbert
    I'm sarcastic... what's your super power? --Unknown
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    Surgery 2/10/93 A/P fusion T4-L3
    Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    If you've signed up and are having trouble posting, please check your spam folder. An email was sent to the email address which you subscribed. You have to follow the instructions in that email. Done that and still having trouble posting? Contact Joe O'Brien at jpobrien@scoliosis.org.

  13. #73
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    Quote Originally Posted by LindaRacine View Post
    Sharon... Burdle is talking about the non-forum part of the NSF website.

    Burdle... if Joe had a medical professional who wrote content for the NSF website, then a section on treatments would be appropriate. I think most people would find little value to a lay person writing about various treatments. There are plenty of websites that do that. You might try SpineUniverse or Spine-health.com.

    --Linda
    I am a bit confused- the website is about awareness and support? So surely if a parent or patient finds the site they are looking for info? I need to make myself familiar with the site.

  14. #74
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    Quote Originally Posted by burdle View Post
    I am a bit confused- the website is about awareness and support? So surely if a parent or patient finds the site they are looking for info? I need to make myself familiar with the site.
    I spend 99.99999% percent of my contact time with this site on the forum. Before this thread, I think I had only viewed the non-forum content a few times and pointed to an article by the SRS there talking about the bracing literature being a train wreck which is obvious to anyone reading it.

    If I want science (etiology, treatments, etc.), I would go to the top journals and the SRS. Unlike certain frequent flyers in the forum, the site management does not purport to be researchers. It is the premier forum on scoliosis in my opinion which is valuable enough.
    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. #75
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    Here is the SRS site.

    http://www.srs.org/

    W.R.T. NSF, I would consider anything beyond the forum to be duplicative of that site. Joe has apparently picked a thing to champion which appears to be early screening. He may have done so because there was no consensus among surgeons that early screening is useful absent some effective conservative treatment. I am just spitting in the wind here in re Joe's purpose.
    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."

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