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Thread: Stop trying to convince that official western medical community is the only option..

  1. #286
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    There's a kind of poison that you just can't get out of a forum without having access to the moderate and delete buttons. Being the lone voice standing just indicates to anyone visiting that 99% of the people agree, and there's this one hot head who doesn't. That doesn't mean that that's the way it is, but when you come into a forum where ugly posts are left standing and nobody says boo, that's the way it feels. I'd love to tell you that it just takes spunk to turn it around, but it's simply not true. Moderate and delete are the only tools that work, once it gets like this.

    Sorry, one more tool. You create something new that's the way you want it, and you get the moderate and delete buttons there. And then you just swing by every once in awhile, the way Tom's group is doing, find the best conservative treatment people and just pick them off.

    [In response to huge misunderstanding, clarifying that this post refers only to stridently anti-non-surgical posters. *NOT* talking about the forum in general]
    Last edited by hdugger; 05-23-2013 at 08:59 PM.

  2. #287
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    Sometimes I wish posts had "like" buttons like facebook does. There are many posts about many different things that I have either agreed with or have enjoyed reading and would have liked to click on a "like" button...

    My own thought is that EVERYONE should be respectful of others on the forum. If you disagree, it can be done in a nice way. Once you express your disagreement, you bury the horse-- you don't keep killing it over and over and over. It is alright to do a little bit of bantering, but not put-downs. The jury is still out about bracing. It is still out about Schroth and other alternative methods. I think all the excellent surgeons have you try other things (not those) before saying that surgery is the only game in town. They want you to try PT, waiting and watching, other things depending on your age.

    I was one who slipped through the cracks for years and years as no one in the medical field seemed to notice my problem. And I guess I wasn't about to bring it up myself! I remember in high school a friend saying how cool my back was when I was in my 2 piece swim suit, since it went all curvy. None of my dresses zipped right. My family doctor, when I was 27 and pregnant, said, BTW, you do know you have scoliosis-- and left it at that. I had back aches all my life, but in my mid 50s thought my back "arthritis" was getting awfully bad. I had my first x-rays. So where would I be in this grouping of camps? I survived without surgery for years, but then had it when it got too bad to deal with. But I remember many years when I was young where I just couldn't move some times... We just are all in the same boat and need to help each other and listen to each other. We are not here to belittle one another for having a different mindset. That is how the world is. How boring it would be if everyone thought the same and did the same and no one tried anything different. There would be no knew inventions, no new explorations, no new creations. And if someone wants to have faith in something that differs from your own mindset, then let mention what yours may be and then let it rest. That is what I have to say on this issue.
    67 and plugging along...
    2007 52° w/ severe lumbar stenosis & L2L3 lateral listhesis (side shift)
    5/4/07 posterior spinal fusion T2-L4 w/ laminectomies and osteotomies @L2L3, L3L4
    Dr. Kim Hammerberg, Rush Univ. Medical Center in Chicago

    Corrected to 15°
    CMT (type 2) DX in 2014, progressing
    NEW 10/2018 x-rays show spondylolisthesis at L4/L5 - Dr. DeWald is monitoring

    Click to view my pics: pics of scoli x-rays digital x-rays, and pics of me

  3. #288
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    Quote Originally Posted by mashkine View Post
    I suspect Tamztom would strongly object to the argument that what he is doing cannot be replicated (in adults and/or kids), as well as the argument that AIS would be more difficult to correct than JIS. At least one adult on this forum, foofer, has reported great results after several months of corrective work, and as far as I know she was one week away from surgery. I hope she will write more about her experience on this forum despite its often hostile atmosphere.
    Absolutely. Everything I do with Tamzin can be and is being replicated by other adults and kids. The goal is to be self-corrective with every movement. "Virtuous cycle." Just takes some initial effort then the ball is rolling. Tamzin is not super-human. She has the same thing everyone else has in here, curves on her spine. She does things that I've learned from working with other ADULTS. This is what this forum should be doing, informing everyone to pool their resources, WHAT BLOODY WORKS, IMMEDIATELY, stops progression and allows people to get on that self-corrective path. It's actually EASY after the initial changes set it.

    As Hdduger says above, Martha Hawes boiled her correction down to an hour an day. With us, I use the term "all day every day", this simply meaning one enables the corrections to be one's habitual movements.

    Dealing with scoliosis is so shrouded in unnecessary myth, bollocks, drivel, assumption 'n stuff! Correcting doesn't require Einsteinian brainpower or Michael Johnson athleticism. It is hard work at first, but becomes just how you are.

    I can say that I DO NOT HAVE TO WORK TAMZIN AT ALL ANY LONGER. I do, and always will do. But her movements, breathing, muscle firing, proprioception, etc. as such now that she can correct all day just being her. "Her" is a wee kid who plays, does ballet, has started running again.

    At the outset, according to the experts in neurosurgery and spine surgery, she was bloody doomed. 3 operations required. What a bloody joke!

    PARENTS AND ADULTS WILL CORRECT THEIR SCOLIOSIS WITHOUT "MEDICAL INTERVENTION", WHICH, IN THE FIELD OF SCOLIOSIS TREATMENT, MAKES IT BLOODY WORSE! AND I'M REFERRING HERE TO SURGICAL INTERVENTION AND NON-INVASIVE CLINICS.

    TAKE CONTROL OF YER OWN BODY AND GIVE YER KIDS CONTROL OF THEIRS.

    PS: IT'S BEEN A LONG DAY....NEEDED A WEE SOAPBOX FOR A BIT...OFF BACK TO MY CAVE NOW...
    07/11: (10yrs) T40, L39, pelvic tilt, rotation T15 & L11
    11/11: Chiari 1 & syrinx, T35, L27, pelvis 0
    05/12: (11yrs) stopped brace, assessed T&L 25 - 30...>14lbs , >8 cm
    12/12: < 25 LC & TC, >14 cms, >20 lbs, neuro symptoms abated, but are there
    05/13: (12yrs) <25, >22cms height, puberty a year ago

    Avoid 'faith' in 'experts'. “In consequence of this error many persons pass for normal, and indeed for highly valuable members of society, who are incurably mad...”

  4. #289
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    Nice post, Susie*Bee. :-)

    Quote Originally Posted by Susie*Bee View Post
    Sometimes I wish posts had "like" buttons like facebook does. There are many posts about many different things that I have either agreed with or have enjoyed reading and would have liked to click on a "like" button...

    My own thought is that EVERYONE should be respectful of others on the forum. If you disagree, it can be done in a nice way. Once you express your disagreement, you bury the horse-- you don't keep killing it over and over and over. It is alright to do a little bit of bantering, but not put-downs. The jury is still out about bracing. It is still out about Schroth and other alternative methods. I think all the excellent surgeons have you try other things (not those) before saying that surgery is the only game in town. They want you to try PT, waiting and watching, other things depending on your age.

    I was one who slipped through the cracks for years and years as no one in the medical field seemed to notice my problem. And I guess I wasn't about to bring it up myself! I remember in high school a friend saying how cool my back was when I was in my 2 piece swim suit, since it went all curvy. None of my dresses zipped right. My family doctor, when I was 27 and pregnant, said, BTW, you do know you have scoliosis-- and left it at that. I had back aches all my life, but in my mid 50s thought my back "arthritis" was getting awfully bad. I had my first x-rays. So where would I be in this grouping of camps? I survived without surgery for years, but then had it when it got too bad to deal with. But I remember many years when I was young where I just couldn't move some times... We just are all in the same boat and need to help each other and listen to each other. We are not here to belittle one another for having a different mindset. That is how the world is. How boring it would be if everyone thought the same and did the same and no one tried anything different. There would be no knew inventions, no new explorations, no new creations. And if someone wants to have faith in something that differs from your own mindset, then let mention what yours may be and then let it rest. That is what I have to say on this issue.
    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. #290
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    Quote Originally Posted by TAMZTOM View Post
    PARENTS AND ADULTS WILL CORRECT THEIR SCOLIOSIS WITHOUT "MEDICAL INTERVENTION", WHICH, IN THE FIELD OF SCOLIOSIS TREATMENT, MAKES IT BLOODY WORSE! AND I'M REFERRING HERE TO SURGICAL INTERVENTION AND NON-INVASIVE CLINICS.
    Tom please publish this in some way. If there is any way I can help you write this up, graph data, etc., please let me know.
    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. #291
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    Quote Originally Posted by Pooka1 View Post
    Tom please publish this in some way. If there is any way I can help you write this up, graph data, etc., please let me know.
    I think SOSORT would publish it. It doesn't matter that you are not in that field if you have a compelling story and it is written cogently and concisely.
    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."

  7. #292
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    Quote Originally Posted by hdugger View Post
    I have written to the NSF, this weekend for the first time, to ask for help. ... But, I am prepared to leave the forum, must leave, if it stays the way it is. I really cannot be party to something which I think is genuinely harming people.
    Since I first starting posting on this forum 2 yrs or so ago, I've been contacted by many silent readers. I was surprised at first by how HARMED many people are by the negative posters. Several of these people are now my friends, affording me further insight. Here's some of the harm caused by the hard-nosed eedjits: 1) kids who don't need spinal fusion are signed up because of the bias in here...that = kids maimed for life because of the irresponsible postings; 2) mothers in tears relaying to me just how devastated they were coming into this place, desperate mothers of wee kids already in emotional turmoil then bludgeoned by callous eedjitry; 3) adults having surgery and coming out worse than they went in. I've talked with intelligent people who were so deluded about the options, they were pessimistic about their chances of ever correcting. Some of these people are now fighting back, straightening their bloody backs, and getting mighty angry at the ignorant drivel that prevails in here.

    All of you silent folk, start shouting!
    07/11: (10yrs) T40, L39, pelvic tilt, rotation T15 & L11
    11/11: Chiari 1 & syrinx, T35, L27, pelvis 0
    05/12: (11yrs) stopped brace, assessed T&L 25 - 30...>14lbs , >8 cm
    12/12: < 25 LC & TC, >14 cms, >20 lbs, neuro symptoms abated, but are there
    05/13: (12yrs) <25, >22cms height, puberty a year ago

    Avoid 'faith' in 'experts'. “In consequence of this error many persons pass for normal, and indeed for highly valuable members of society, who are incurably mad...”

  8. #293
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    Quote Originally Posted by Susie*Bee View Post
    Sometimes I wish posts had "like" buttons like facebook does. There are many posts about many different things that I have either agreed with or have enjoyed reading and would have liked to click on a "like" button...
    sorry susie, I completely apologize for throwing around surgical/non-surgical as if everyone who had surgery believed the same things. No, I absolutely do not mean you or the majority of people on this forum who are just trying to figure out what you want to do. If I in any way made you think that just having surgery was a betrayal to those of us have haven't, then I'm a complete idiot and I don't care who knows it. Sorry, wrong apology (because I have a friend who write a blog about apologies). My words were stupid and ill-chosen, and I understand why it felt like an attack. It was completely not meant that way.

    I'm using "surgical" to stand for "surgical and stridently anti-non-surgical" and I will try to use exactly that phrasing in the future. I think that applies to exactly one person on the forum (but one who has something like 5% of the total posts, so it sometimes feels like more). The talking-about-bracing-is-cavalier is maybe two more people. So, it's a tiny fraction. But, even with just a handful of people, it is omnipresent. So, the whole tone of the place is set by, like, .01% of the forum.

    Again, I'm an idiot. I'll even put it in my signature so that everyone knows Everything else you say is correct. I'll put that in my signature too.

    [Edit: Went back to previous posts to make clear that I was trying to address only the stridently anti-conservative treatment crowd. Want to state this here in case my edits make Susie*Bee seem like she's responding to nothing.]
    Last edited by hdugger; 05-23-2013 at 09:04 PM.

  9. #294
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    OK, signature change done.

  10. #295
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    Quote Originally Posted by hdugger View Post
    Sorry, one more tool. You create something new that's the way you want it, and you get the moderate and delete buttons there. And then you just swing by every once in awhile, the way Tom's group is doing, find the best people and just pick them off.
    Hddugger, check your email shortly. I found another one of the best people who I want to "pick off"...you.
    07/11: (10yrs) T40, L39, pelvic tilt, rotation T15 & L11
    11/11: Chiari 1 & syrinx, T35, L27, pelvis 0
    05/12: (11yrs) stopped brace, assessed T&L 25 - 30...>14lbs , >8 cm
    12/12: < 25 LC & TC, >14 cms, >20 lbs, neuro symptoms abated, but are there
    05/13: (12yrs) <25, >22cms height, puberty a year ago

    Avoid 'faith' in 'experts'. “In consequence of this error many persons pass for normal, and indeed for highly valuable members of society, who are incurably mad...”

  11. #296
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    Quote Originally Posted by Pooka1 View Post
    Tom please publish this in some way. If there is any way I can help you write this up, graph data, etc., please let me know.
    It will be published. Simply can't stop it now. People are correcting! Kids and adults. I will accept help from ANYONE who can help and wants to help. I have no ego, no pettiness, no motive other than to do my wee bit to help kids avoid the awful future they currently have at the mercy of an uncaring medical system. World-bloody-wide too.
    07/11: (10yrs) T40, L39, pelvic tilt, rotation T15 & L11
    11/11: Chiari 1 & syrinx, T35, L27, pelvis 0
    05/12: (11yrs) stopped brace, assessed T&L 25 - 30...>14lbs , >8 cm
    12/12: < 25 LC & TC, >14 cms, >20 lbs, neuro symptoms abated, but are there
    05/13: (12yrs) <25, >22cms height, puberty a year ago

    Avoid 'faith' in 'experts'. “In consequence of this error many persons pass for normal, and indeed for highly valuable members of society, who are incurably mad...”

  12. #297
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    Calling all idiots...

    07/11: (10yrs) T40, L39, pelvic tilt, rotation T15 & L11
    11/11: Chiari 1 & syrinx, T35, L27, pelvis 0
    05/12: (11yrs) stopped brace, assessed T&L 25 - 30...>14lbs , >8 cm
    12/12: < 25 LC & TC, >14 cms, >20 lbs, neuro symptoms abated, but are there
    05/13: (12yrs) <25, >22cms height, puberty a year ago

    Avoid 'faith' in 'experts'. “In consequence of this error many persons pass for normal, and indeed for highly valuable members of society, who are incurably mad...”

  13. #298
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    Quote Originally Posted by TAMZTOM View Post
    I was surprised at first by how HARMED many people are by the negative posters.
    THAT is it exactly. People come here for help and feel harmed and flee. I will never understand why that feels OK.

  14. #299
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    Quote Originally Posted by TAMZTOM View Post
    Hddugger, check your email shortly. I found another one of the best people who I want to "pick off"...you.
    Wow, it's the NSF version of the rapture

  15. #300
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    Note to Rohrer

    OK, that whole "if you just don't use their name when you talk about them, it will be much better" just completely blew up on me. It really cannot be more polite to let Susie*Bee! (for chrisakes!) think that I'm insulting her just because it's not polite to call Sharon out by name. I am shifting back to specifically calling people out by name instead of, you know, just letting the whole forum think that I'm mad at them.

    [I have added a clarification to preceding posts sort of cutting it both ways - specifying that they're directed towards stridently anti-non-surgical posters only, but not actually naming any names. Is *that* the polite method???]
    Last edited by hdugger; 05-23-2013 at 07:51 PM.

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