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Thread: "Driving people away" - who, why, and does it matter?

  1. #31
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    Going back to the original discussion here:
    the CLEAR people take x-rays like twice a visit? Don't you think that a person could be persuaded to believe that actual correction was made because of the before and afters? If I were involved in that, I would have posted those x-rays as my "proof". I would have been corrected about the need to wait some time before an "after" x-ray, which in turn would have caused me to take a second look at what I was doing.

    I always thought the "Non-Surgical" section was the place to talk about stuff like that and the "Research" section was more the evidence based section relating to actual studies that either prove or disprove a certain therapy or breakthrough WITH REGARD TO SCOLIOSIS. Even with that, studies can contradict and often need to be repeated several times before they are accepted, even by the scientific community.

    But, even in that section (Research), there are claims being made that have no basis in actual scoliosis research. I think those claiming such things should take it to the Non-Surgical part of the forum. Just my opinion. Maybe that section should be renamed "Scoliosis Research" so it doesn't get tainted with all of these hypothesis. I'm just as guilty for participating in those threads, so I'm not condemning any one person. However, in my own defense, I posted a research paper having to do with surgical outcomes in the "Surgical" part of the forum because I felt that it best fit that section. There were a lot of questions flying around about outcomes at the time and I was considering surgery for myself. Unfortunately, I scared or angered a few people who thought I was anti-surgery. I'm not anti-anything if it really works! It's a risk/benefit ratio of what you are willing to risk to gain a so-called benefit whether it's proven or unproven. Alternative treatments also carry long term risks. There are NO guarantees with anything in this life.
    1985 - Dx w/ painful AIS at 16 with 39* upper LEFT thoracic single curve.
    2000 - 41*
    2010 - 46* (T1 - T6) 38* (T6-L2) Now a double thoracic
    2012 - Dx w/ Cervical Muscle Dystonia.
    DDD L5/S1 with left nerve impingement
    Left SI joint dysfunction

  2. #32
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    Quote Originally Posted by rohrer01 View Post
    There are NO guarantees with anything in this life.
    Of course! And scoliosis is farr to be the exception.

  3. #33
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    Quote Originally Posted by rohrer01 View Post
    Going back to the original discussion here:
    the CLEAR people take x-rays like twice a visit? Don't you think that a person could be persuaded to believe that actual correction was made because of the before and afters? If I were involved in that, I would have posted those x-rays as my "proof". I would have been corrected about the need to wait some time before an "after" x-ray, which in turn would have caused me to take a second look at what I was doing.
    Good point.

    I always thought the "Non-Surgical" section was the place to talk about stuff like that and the "Research" section was more the evidence based section relating to actual studies that either prove or disprove a certain therapy or breakthrough WITH REGARD TO SCOLIOSIS. Even with that, studies can contradict and often need to be repeated several times before they are accepted, even by the scientific community.
    I agree with this.

    But, even in that section (Research), there are claims being made that have no basis in actual scoliosis research. I think those claiming such things should take it to the Non-Surgical part of the forum. Just my opinion. Maybe that section should be renamed "Scoliosis Research" so it doesn't get tainted with all of these hypothesis. I'm just as guilty for participating in those threads, so I'm not condemning any one person. However, in my own defense, I posted a research paper having to do with surgical outcomes in the "Surgical" part of the forum because I felt that it best fit that section. There were a lot of questions flying around about outcomes at the time and I was considering surgery for myself. Unfortunately, I scared or angered a few people who thought I was anti-surgery. I'm not anti-anything if it really works! It's a risk/benefit ratio of what you are willing to risk to gain a so-called benefit whether it's proven or unproven. Alternative treatments also carry long term risks. There are NO guarantees with anything in this life.
    I don't see the point of taking counterfactual information out of one section and putting it in another. It doesn't belong on a forum to help people. The armchair biochemistry and genetics going on here is breath-taking.

    A problem that never seems to go away is people who are evidence-based get labeled as a "lover" of whatever has the most evidence. And then people don't realize it is not because they randomly "love" that treatment but rather because that treatment has the most evidence of efficacy.

    There is a war on science and reason and ration and some of the casualties are people desperately trying to understand a serious medical condition. The chickens are coming home to roost.
    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. #34
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    Maria,

    I understand your point, but, as I said in the last post, I don't think even you would have survived the greeting in question. Nor would I. To me, that's a problem

    Here's what I'd suggest, instead, as a way of greeting people for whom you are not certain about the veracity of what they're saying.

    First, *greet* them. Don't frisk them at the door. Welcome them the way you'd welcome anyone else.

    If they make an obvious misstatement (as one of the posters did about surgical risk) correct it with facts.

    If they go way beyond their own experience to suggest that such and such is guaranteed to work for everyone, correct them again with facts.

    But, unless they're doing that - unless they're boldly proclaiming that such and such is true for everyone, then they're just trying to share their own experience and you treat them like anyone else trying to share their own experience. If what they say varies with what you know, then you (gently) correct. But you don't make them feel as if they've just wandered into the worst bar in town.

    What concerned me, particularly in one of the cases, was that the claim was really not all that bold (the child still had a significant curve after CLEAR treatment), AND the child had another medical problem (I believe it was diabetes) AND the parent seemed utterly convinced that surgery (which was likely in the cards for her kid, becuase the curve was sitll significant) was going to kill her child. I do not find such a participant to be "The Sworn Enemy of Truth." I find such a participant to be exactly the kind of person you want to hold on to because she *needs* support. Because she has a child with multiple problems who was likely going to require a surgery that she believed would kill her. The whole thing just kind of broke my heart. Would it *not* have been possible to more gently greet that woman so that she could, possibly, have been helped? Was it really necessary to drive her back to the place where people were telling her that surgery would kill her child?

    Anyway, that was my concern, in that case. People were so concerned with minimizing the (I believe) small risk to this forum posed by the woman's misconceptions, that they ended up exposing her kid to much more serious risks.One can be faithful to the truth and still find a way to support someone who does not have as clear an understanding of scoliosis. That is all I was saying, in that case.

  5. #35
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    Quote Originally Posted by rohrer01 View Post
    But, even in that section (Research), there are claims being made that have no basis in actual scoliosis research.
    Sure! You may quote hundreds or probably thousands belonging to Pooka1.. just only in this sections.. if you consider also the rest of non surgical sections, surely you have thousands!

  6. #36
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    Quote Originally Posted by flerc View Post
    Of course! And scoliosis is farr to be the exception.
    Yes, I agree. There is also such a diverse group of people coming to this forum from all around the world where cultures vary and manners vary. For this reason we need to be extra cautious about how we treat each other. There are still going to be people that get offended and go away. If that is the case, then they will find a support group that best fits their needs.

    With that said, we are free to say I want to try this treatment for this reason or that. If you are doing a treatment, you should be free to post about what is happening along the line of that course of treatment. On the flip side, if we are saying we are doing this treatment and it is WORKING, then it's reasonable to ask for evidence so that others might try it. If there is no evidence, then others might be misled into spending a ton of money on a treatment that leaves them broke and emotionally scarred. So that should not be allowed simply for the protection of others.
    1985 - Dx w/ painful AIS at 16 with 39* upper LEFT thoracic single curve.
    2000 - 41*
    2010 - 46* (T1 - T6) 38* (T6-L2) Now a double thoracic
    2012 - Dx w/ Cervical Muscle Dystonia.
    DDD L5/S1 with left nerve impingement
    Left SI joint dysfunction

  7. #37
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    Quote Originally Posted by flerc View Post
    Sure! You may quote hundreds or probably thousands belonging to Pooka1.. just only in this sections.. if you consider also the rest of non surgical sections, surely you have thousands!
    She will correct me if I'm wrong but I am guessing she is referring to the infectious disease hypothesis of idiopathic scoliosis which is not being pursued by any of the three or so research teams working on IS but only being pursued by one lay person using google. Even your buddy hdugger admitted she doesn't read that stuff.
    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. #38
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    Quote Originally Posted by flerc View Post
    Sure! You may quote hundreds or probably thousands belonging to Pooka1.. just only in this sections.. if you consider also the rest of non surgical sections, surely you have thousands!
    I mentioned that I wasn't picking on one individual. It's a problem in general and I refrain from naming names. We should not be allowed to voice personal vendettas against an individual. You may disagree with someone, but do it in a way that isn't a personal attack. Naming names is too personal. Feel free to attack the idea, not the person.
    1985 - Dx w/ painful AIS at 16 with 39* upper LEFT thoracic single curve.
    2000 - 41*
    2010 - 46* (T1 - T6) 38* (T6-L2) Now a double thoracic
    2012 - Dx w/ Cervical Muscle Dystonia.
    DDD L5/S1 with left nerve impingement
    Left SI joint dysfunction

  9. #39
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    Quote Originally Posted by rohrer01 View Post
    With that said, we are free to say I want to try this treatment for this reason or that. If you are doing a treatment, you should be free to post about what is happening along the line of that course of treatment. On the flip side, if we are saying we are doing this treatment and it is WORKING, then it's reasonable to ask for evidence so that others might try it. If there is no evidence, then others might be misled into spending a ton of money on a treatment that leaves them broke and emotionally scarred. So that should not be allowed simply for the protection of others.
    That could serve as an abstract of my original post. Well stated.
    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. #40
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    Quote Originally Posted by Pooka1 View Post
    Even your buddy hdugger admitted she doesn't read that stuff.
    Don't drag me into your dispute with Dingo. I've no quarrel whatsoever with Dingo and I find his ideas interesting.

  11. #41
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    Quote Originally Posted by hdugger View Post
    Don't drag me into your dispute with Dingo. I've no quarrel whatsoever with Dingo and I find his ideas interesting.
    Don't drag me into your continually misunderstandings of my posts.
    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. #42
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    Quote Originally Posted by Pooka1 View Post

    I don't see the point of taking counterfactual information out of one section and putting it in another. It doesn't belong on a forum to help people. The armchair biochemistry and genetics going on here is breath-taking.

    A problem that never seems to go away is people who are evidence-based get labeled as a "lover" of whatever has the most evidence. And then people don't realize it is not because they randomly "love" that treatment but rather because that treatment has the most evidence of efficacy.

    There is a war on science and reason and ration and some of the casualties are people desperately trying to understand a serious medical condition. The chickens are coming home to roost.
    I think having an opinion on something is okay. I don't think that these opinions belong in the research section because people that go there are looking for facts. Now if an opinion is stated as a FACT, then it shouldn't be allowed. Free thinking, no matter how absurd it sounds to some, is how new discoveries are made. So as long as there is no counter PROOF against a hypothesis, I think it should stand, just not in the Research section. Just my opinion.
    1985 - Dx w/ painful AIS at 16 with 39* upper LEFT thoracic single curve.
    2000 - 41*
    2010 - 46* (T1 - T6) 38* (T6-L2) Now a double thoracic
    2012 - Dx w/ Cervical Muscle Dystonia.
    DDD L5/S1 with left nerve impingement
    Left SI joint dysfunction

  13. #43
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    Quote Originally Posted by rohrer01 View Post
    I think having an opinion on something is okay. I don't think that these opinions belong in the research section because people that go there are looking for facts. Now if an opinion is stated as a FACT, then it shouldn't be allowed. Free thinking, no matter how absurd it sounds to some, is how new discoveries are made. So as long as there is no counter PROOF against a hypothesis, I think it should stand, just not in the Research section. Just my opinion.
    I agree. We need a "Folk Research" section for that stuff.
    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. #44
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    Quote Originally Posted by hdugger View Post
    The difference, IMO, is that you are talking about a single person's response. I'm assuming other people were supportive or you would not have stuck around.
    It was more like one person was the ringleader and others would join in (although those supporting characters would pop in and out - and it wasn't always the same folks as best I can recall).

    I had an occasional supporter, but for the most part they were well outnumbered.

    I'm not trying to draw a line and say what's right and what's wrong - just trying to give the facts as best I can recall.

    What kept me here was this. I *almost* missed finding out about VBS for my son. It was by pure chance that I read about it. I didn't want another parent to be in the dark and not know about all of their options, in case VBS was a good fit for their child.
    mariaf305@yahoo.com
    Mom to David, age 15, braced June 2000 to March 2004
    Vertebral Body Stapling 3/10/04 for 40 degree curve (currently holding around 26 degrees)
    Under care of Dr. Randal Betz since 2004

    Also mom to Nicole (22) and Danny (25)

    Link to VBS Website: www.vertebralstapling.com

    Janet Cerrone, PA to Dr. Betz janetcerrone@spineandscoliosis.com or (609) 912-1500

  15. #45
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    Quote Originally Posted by mariaf View Post
    It was more like one person was the ringleader and others would join in (although those supporting characters would pop in and out - and it wasn't always the same folks as best I can recall).

    I had an occasional supporter, but for the most part they were well outnumbered.

    I'm not trying to draw a line and say what's right and what's wrong - just trying to give the facts as best I can recall.

    What kept me here was this. I *almost* missed finding out about VBS for my son. It was by pure chance that I read about it. I didn't want another parent to be in the dark and not know about all of their options, in case VBS was a good fit for their child.
    I am assuming this was back in the mid 2000s and I think I know who you are talking about. I hope her child is doing well. I assume she is now in or has been through the growth spurt.

    ETA: Years later, I had some back and forths on bracing with her on the other forum. If this is the same person, I understand your comments.
    Last edited by Pooka1; 01-09-2014 at 10:39 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."

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