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  • SSo is a good forum but is not a place where I would go for unadulterated facts if they come at the expense of feelings.

    But as we have seen repeated here, there is a certain percentage of folks who like that and want that. I think they should migrate to SSo for their own sake. I view NSF as too factual for some.

    This place is moderated but by at least one person who is not only interested in the facts but knows them. It is no coincidence that she seems the substance through the form... where the rubber hits the road.

    I have seen enough of moderated fora, SSo and others, such that the liabilities out weigh any benefit of moderation... counterfactual material that goes unedified, tossing experts how you would have to pay big bucks to say the same thing in person for nonsense reasons, etc. etc. If the point is to help people, these types of actions aren't working in my book.

    Again, tone complaints are almost always substance complaints that dare not speak there name. There is no tone in the world that has ever been devised to tell someone who is frightened out of their wits over surgery that no conservative treatment can produce the same near-permanent spine stability. No tone exists in which to tell a parent that there is no good evidence for bracing efficacy when that is their entire hope. (Bracing might work but someone is going to have to show it.)

    NSF comes closest to the only legitimate purpose for having a moderator... pointing out and zapping counterfactual material. This is a key function on a health forum. Unmoderated fora exist for a very real and useful 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."

    Comment


    • Originally posted by mamamax View Post
      Without it (like we are experiencing here) this board appears (by contrast) to be run by a bunch of very "Ugly Americans" in some chat room... which is not fair representation of the majority of patients and parents here.
      Well if people are making incorrect conclusions then that says something about them, yes?

      When I voluntarily stopped posting on SSo, I missed some folks but it was a relief. Perhaps you could have heard my huge sigh from wherever you are.

      Moderated fora will always be hamstrung to one extent or another. It's annoying when its easy to see how it could be better, how many less misleading posts would get by, etc. etc.
      Last edited by Pooka1; 12-09-2009, 05:49 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."

      Comment


      • Originally posted by mamamax View Post
        If everyone here is not appreciative of quality leadership in action - well, they should be.

        Without it (like we are experiencing here)
        You obviously have never been on a moderated group where experts (i.e., LEADERSHIP) were tossed for bullcrap reasons. That's being unappreciative of leadership in the extreme as a DIRECT reason of moderation. You can have that. If that goes on, those groups are going to be a field of bunnies looking quizzically at one another getting nowhere fast.

        NSF, though moderated, is moderated by someone who is knowledgeable. That is the key it seems. It is the only moderated forum I have ever found that is even tolerable. As I said, I don't frequent moderated fora so I am certainly no expert on them but that's what it seems.
        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."

        Comment


        • Clearly there is need for both surgical and non surgical methods - hence forums for each - and each should be allowed to operate unfettered by - the things we are discussing.

          Comment


          • Originally posted by mamamax View Post
            Moderation and leadership like this - Please!
            I agree with those who have said (and I mean this sincerely, not with any disrespect) that if some members prefer SSo and how it is moderated, they should frequent that forum instead. This one is run differently and works for many of us. As Linda said, she has moderated this way all along and is not, to her credit, going to buckle to pressure to change now.

            There have been times (when one or two members were trashing VBS a while back, and misstating the facts about it which they knew little or nothing) when it would have been nice for someone (i.e., moderator) to ask them to stop posting inaccuracies that could have been harmful to a new member looking for correct and current information.

            But, once I understood that is not how it works, I (along with a few others with some personal knowledge) tried to provide the accurate and current information which, in some cases, I got right from the doctor(s) who perform the procedure.

            Point being - I'm a big girl and can speak for myself. I think that mentality is necessary on these forums - one can't and shouldn't wait for the moderators to jump in and try to silence another member - just because they don't agree with them.
            mariaf305@yahoo.com
            Mom to David, age 17, braced June 2000 to March 2004
            Vertebral Body Stapling 3/10/04 for 40 degree curve (currently mid 20's)

            https://www.facebook.com/groups/ScoliosisTethering/

            http://pediatricspinefoundation.org/

            Comment


            • Be responsible for what you read

              Outstanding post, Maria, and I couldn't agree with you more.

              All adults need to be responsible for what they read. Period. Remember folks, you can block all posts from an individual if you don't wish to read their posts. Mamamax, maybe you should try it instead of whining endlessly about how much you don't like Sharon. And please spare Linda all the dissing--she doesn't deserve a minute of it.

              Just my two cents.
              Gayle, age 50
              Oct 2010 fusion T8-sacrum w/ pelvic fixation
              Feb 2012 lumbar revision for broken rods @ L2-3-4
              Sept 2015 major lumbar A/P revision for broken rods @ L5-S1


              mom of Leah, 15 y/o, Diagnosed '08 with 26* T JIS (age 6)
              2010 VBS Dr Luhmann Shriners St Louis
              2017 curves stable/skeletely mature

              also mom of Torrey, 12 y/o son, 16* T, stable

              Comment


              • Hi Gayle
                i second that! and i dont think it is surgical vs. non surgical methods being discussed that is the problem..it is falsehoods, half truths, & lies that create the problems....

                jess
                Last edited by jrnyc; 12-09-2009, 08:18 AM.

                Comment


                • I really dislike comparisons between our forums. Comparing our methods of moderation might encourage people to think the forums are competing and that is NOT the case, we're all here to support people with scoliosis and I think we ought to work together to do so. I don't think one forum is better than the other, and I'm always happy to point people over here and to other sites when I can see they will get more useful help. SSO is based in the UK and as such most of our membership is from Europe, so we don't have the wealth of experience of scoliosis treatments in the US. We're also set up and run by a group of friends, we're a lot smaller and the admin funds everything herself.

                  We try to keep things civil so we ONLY moderate things when people start to insulting and upsetting others - we have a lot of kids and stressed-out parents of very young children on the site who get scared to post when they see others being personally attacked. It is entirely possible to challenge information and disagree without this happening and we don't remove any posts that have been written in a calm and civil manner. Other than this, we moderate to move posts to the appropriate forum and remove dodgy porn spam (which I suspect is what Linda and the other mods here do a lot of, but they do such a good job that most people won't notice!).

                  There's nothing wrong with feeling more comfortable over here, or over there, or anywhere else, or being a member of more than one forum. Although I'm a mod at SSO I'm a member of several other fora and I'll post if I'm interested in something or if I think I can say something useful. Also, there are a lot of people on this site that I like and respect, too
                  Last edited by tonibunny; 12-09-2009, 08:22 AM.

                  Comment


                  • Well said, tonibunny.

                    Each forum is set up a little differently and they are not all run exactly the same. I also belong to several forums and co-moderate the VBS site. As you said, we are NOT in competition with each other!! IMHO, it is juvenile for anyone to say "they do it better over there", etc.

                    And you are correct that moderators like Linda are dealing with spam and other issues all the time. There is a LOT of work involved for those of us that VOLUNTEER to moderate these sites in the hopes of helping patients and parents. Leave Linda alone - I doubt anyone is fighting her for her job

                    Back to the different forums - as you know, just the other day, here on NSF, we referred a mom over to the infantile/casting site. Sometimes on the VBS site, we mention Spinekids or NSF, if we think the person could benefit from those sites. Again, we are not in competition with each other and I can't even put my head around the mindset of anyone who would think that we were.

                    Everyone's situation is a bit different and folks should frequent the sites they are comfortable with and also those that fit their specific needs and stop whining about the ones they don't like - it helps nobody.
                    mariaf305@yahoo.com
                    Mom to David, age 17, braced June 2000 to March 2004
                    Vertebral Body Stapling 3/10/04 for 40 degree curve (currently mid 20's)

                    https://www.facebook.com/groups/ScoliosisTethering/

                    http://pediatricspinefoundation.org/

                    Comment


                    • science vs. nonscience

                      This debate has nothing to do with science vs. nonscience.

                      When I posted studies that showed that asymmetry played a roll in Scoliosis or that Torso rotation was helpful I don't remember dissenters posting opposing studies.

                      Go through this thread. Most of the opposing responses are nothing but anger, emotion and name calling.

                      LindaRacine

                      I'm not the only moderator, so you might at least include the others when you're trashing me.
                      Fair enough, neither you nor any of your staff members do their job. The minimum requirement for a healthy community is basic politeness. Without that this forum becomes a competition to see who can shout the loudest.
                      Last edited by Dingo; 12-09-2009, 09:03 AM.

                      Comment


                      • On freedom

                        There's alot of talk on this thread about open moderation and freedom. Freedom isn't some objective thing - it all depends on where you sit.

                        A slight digression: I used to live in 1000 sq ft apartment which was laid out so that my mother had a room, set off from the rest of the apartment with a private balcony. All the rest of us (three people, two cats, and a large dog) were in a smaller room, without a balcony, which opened up directly off the kitchen. My mother always remembers that as "our amazingly spacious and well-separated 1000 sq ft apartment," no matter how many times we remind her that it wasn't all that spacious or well-separated for all of us. Not at all to diss my mom, who is wonderful. Just to say that what a thing is is a matter of perspective.

                        Likewise, if you're discussing surgery on this forum, it feels very free. If you're disinterested in topics other then surgery but want the freedom to comment on them, it's also very free. If, on the other hand, you're interested in *following and exchanging ideas* on a topic other than surgery, it is virutally impossible to maintain a thought. No matter what topic you start, there's are constant distractions, caveats, personal disputes, more caveats, more personal disputes. Dear god, I think there was even an intervention! It's enough to make your head spin!

                        To get a sense of the view from over here, imagine that *every* time someone posted about an upcoming surgery on this forum, the "horrific-and-true-stories-about-spinal-surgery" bus rolled through. "Did you know that the pedical screws can rupture the spinal column?" "Are you sure you're only going to have one surgery? Take a look at that revision forum - you may be setting yourself up for surgery after surgery after surgery without any relief from pain." "Are you really comfortable exposing your child to that much risk?" All true stuff, mind you, just in such a volume that there are five or six "horrific-but-true" tales for every one you're able to post. Yes, you have the freedom to ignore them. Yes, you have the freedom to argue your point. But, having the freedom to fight your way through a discussion just doesn't feel all that free.

                        Comment


                        • On having a sense of proportion

                          A sense of proportion always.

                          Treatment modality "A" has a very high success rate and extremely good safety based on years of evidence.

                          Treatment "B" doesn't have a lick of hard evidence for permanently reducing or halting curves in decades and decades in some cases and yet people continue to be routinely suckered out of their money as we type.

                          Yes you can bring up surgical nightmare stories but unless they are immediately chased by the risk factors, incidence rates, etc., it is misleading.

                          What is also misleading is people getting on here claiming PT, chiro, bracing, etc. halts or reduces curves absent any real evidence.

                          You continue to shoot the messenger on this point. The messenger is not personally responsible for the vacuum of evidence for conservative treatments, yes?

                          Now pain is one thing that is actually better treated conservatively rather than surgically as far as I know for the general population, not sure about scoliosis patients.

                          So a sense of proportion and intellectual honesty and being clear what you are claiming is effective for which conditions is always in order.
                          Last edited by Pooka1; 12-09-2009, 01:08 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."

                          Comment


                          • Originally posted by Pooka1 View Post
                            You continue to shoot the messenger on this point. The messenger is not personally responsible for the vacuum of evidence for conservative treatments, yes?
                            I'm not shooting, and I don't have a dog in this fight. I have a son with a big thoracic curve who will likely require surgery unless there's something better. I'm guessing "surgery" is more likely then "something better," but I owe it to my son to explore if there's any way he can maintain a "normal" spine without being permently disfigured. Again, pardon but the language, but I do need to emphasize how strongly I feel about it.

                            Given this, I would appreciate the opportunity to *explore* the other available options without having to constantly read about who likes who. It's not primarily messengers or messages that I'm trying to clear my way through - it's the onslaught of messages with a whole lot of form and very little substance.

                            I am equally interested in the *substance* from both sides. But, again, the onslaught of postings "against" has had a pretty small amount of substance bundled in a big, emotional bundle of form.

                            There is simply no reason - I'm looking at you here Pooka - to state your concerns after every single post that Dingo makes. It would be more then adequate to calmly state your concerns once on every new page of the discussion - "I don't think Dingo has the scientific training to interpret these studies. I don't think there's been adequate followup. I would be very cautious about interpreting studies with no control group." If I'm missing some part of the message, you could toss that in. If you simply cannot restrain yourself, you could throw in a little "And I think Dingo is a big, fat poo-poo head" every couple of pages. All of that is fine. But the *volume* of your posts is neither message or messenger. It's just a distraction. And it makes it very difficult for the rest of us to hear each other over the din.
                            Last edited by hdugger; 12-09-2009, 04:00 PM.

                            Comment


                            • asymmetry

                              There is plenty of evidence both for and against Scroth, Spinecor, etc. etc.

                              I think the main problem that people run into when they argue against strength asymmetry is that there isn't a lot (or maybe any) counter evidence. That leaves dissenters with two uncompelling arguments that they fall back on over and over again.

                              A) The growing volume of research on strength asymmetry consists of nothing but bad studies.
                              B) I'm a bad father, misguided or scientifically ignorant.

                              If anyone has a link to counter evidence please post it. I am eager to read it. In the meantime research is piling up that strength asymmetry may play a decisive role in Scoliosis.

                              2007: Trunk rotational strength asymmetry in adolescents with idiopathic scoliosis: an observational study

                              Accumulated evidence has shown asymmetry in muscle structure, mass, innervation, and activity level in adolescents with idiopathic scoliosis [1-9]. Recently it has been found that an increased EMG ratio between the convex and concave sides of right thoracic curves at the lower end vertebra is linked to curve progression [10-12]. The asymmetric muscle activity is suggested to be associated with increased axial rotation of the spine, which in turn is associated with Cobb angle progression [12]. Based on these findings, it seems logical that trunk strength asymmetry would be present in patients with idiopathic scoliosis. Two recent studies have examined the trunk rotational strength asymmetry in adolescents with idiopathic scoliosis [13,14]They reported that patients with idiopathic scoliosis were weak when rotating toward their curve's concave side and suggested a relation between the strength asymmetry and progression of the spinal curvature. However, no statistical analyses of the data and no comparison to healthy subjects were provided.
                              If you'd like additional info please go to the link and check out the references.
                              Last edited by Dingo; 12-09-2009, 03:11 PM.

                              Comment


                              • frog study / Moreau Patent

                                October 2009: Vestibular asymmetry as the cause of idiopathic scoliosis: a possible answer from Xenopus.

                                Long story short scientists destroyed the part of the nervous system responsible for balance, in response muscles developed asymmetrically and Scoliosis occured.

                                Human idiopathic scoliosis is characterized by severe deformations of the spine and skeleton. The occurrence of vestibular-related deficits in these patients is well established but it is unclear whether a vestibular pathology is the common cause for the scoliotic syndrome and the gaze/posture deficits or if the latter behavioral deficits are a consequence of the scoliotic deformations. A possible vestibular origin was tested in the frog Xenopus laevis by unilateral removal of the labyrinthine endorgans at larval stages. After metamorphosis into young adult frogs, X-ray images and three-dimensional reconstructed micro-computer tomographic scans of the skeleton showed deformations similar to those of scoliotic patients. The skeletal distortions consisted of a curvature of the spine in the frontal and sagittal plane, a transverse rotation along the body axis and substantial deformations of all vertebrae. In terrestrial vertebrates, the initial postural syndrome after unilateral labyrinthectomy recovers over time and requires body weight-supporting limb proprioceptive information. In an aquatic environment, however, this information is absent. Hence, the lesion-induced asymmetric activity in descending spinal pathways and the resulting asymmetric muscular tonus persists. As a consequence the mostly cartilaginous skeleton of the frog tadpoles progressively deforms. Lack of limb proprioceptive signals in an aquatic environment is thus the element, which links the Xenopus model with human scoliosis because a comparable situation occurs during gestation in utero. A permanently imbalanced activity in descending locomotor/posture control pathways might be the common origin for the observed structural and behavioral deficits in humans as in the different animal models of scoliosis.
                                Fast forward to Dr. Moreau's OPN patent.
                                METHOD OF DETERMINING RISK OF SCOLIOSIS

                                [0066] OPN (also called secreted phosphoprotein-1 , minopontin, or Eta-1) is a phosphorylated glycoprotein containing an arginine-glycine-aspartate (RGD) sequence present in mineralized tissues such as extracellular matrices. This multifunctional cytokine is involved in many pathological conditions.9'10 The presence of OPN transcripts and proteins in postural control centers such as the cerebellum, skeletal muscle proprioceptive sensory organs, and inner ear structures that control of equilibrium(11) is of interest, since AIS patients also exhibit defects in postural control, proprioception and equilibrium.(12;13) High plasma OPN levels have been found in different adult cancers and inflammatory conditions30"33.
                                High levels of OPN appear to cause scoliosis and it's found in the balance centers of the human nervous system. I agree with Dr. Moreau, that certainly is "of interest".
                                Last edited by Dingo; 12-09-2009, 03:31 PM.

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