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

  1. #301
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    Quote Originally Posted by hdugger View Post
    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.]
    No apology needed-- I did not feel betrayed or attacked at all. I guess it's all in the tone and I didn't "read" any negative tone in your words. I'm sorry you felt like an idiot because I didn't see that in any way. I think you are reading too much into it. (Maybe...) And you definitely don't need to say anything in your signature, silly. You are too kind. Friends? I hope.
    67 and plugging along...
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  2. #302
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    Thank you Susie. I'll keep the reminder signature for a day, just to keep myself in line

    My son also likely straddles the fence. I am so hopeful for the role of exercise, in general, but I fear that because he has congenital scoliosis and is self-fused at the apex of his curve, that no amount of adjusting his muscles is going to unfuse that part of his spine and make it straight. Even the people at the ISICO clinic (a group of Italy that's really plowing forward on this stuff) were very guarded in their prognosis. Just not enough cases like his.

    So, although we'd prefer conservative treatment, we prepare ourselves for eventually needing surgery. But, the risk that way is that he also has kyphosis, and almost all of the kyphosis cases I've seen operated on recently (with one exception in this forum) have had not so great outcomes. A few had problems so bad that it left them in the throes of a depression and regret.

    So, what to do, what to do?

    I just learn as much as I can, both ways, and hope that, when we must make a choice, it will lead to the brightest future for him.

  3. #303
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    Quote Originally Posted by hdugger View Post
    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.]
    THIS is what I'm talking about. There are NOT two camps of people. You wouldn't have felt compelled to apologize to Susie*Bee if you hadn't categorized the whole forum that way. I'm not in a camp, either. Flerc thinks I'm doing something immoral. What is immoral about trying to find out about treatment options and current research on scoliosis? I'm being accused for what? Because one member is being singled out by a band of people mad at her? I've had my share of problems with this person AND WORKED IT OUT VIA PM like ADULTS should. If it can't be worked out and a person feels bullied, then go to the "teacher" and report it.

    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???]
    I was talking about refuting ideas, NOT dividing the forum into "camps" so that people feel that they have to defend their views. I thought I was pretty clear on that one. Your "idea" that there were two camps on this forum is what blew up in your face, NOT namelessly refuting an idea about a perceived misunderstanding in research, treatments, etc.
    Be happy!
    We don't know what tomorrow brings,
    but we are alive today!

  4. #304
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    Quote Originally Posted by mashkine View Post
    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.
    I miss foofer! I miss a bunch of the people who have felt that they had to go private, over the years. It really does feel, sometimes, like the left behind after the rapture. You're talking to all of these interesting people and then, poof!

  5. #305
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    Foofer is very nice. Busy correcting her spine.
    "The most deadly action you can take is to internalize someone else's negativity, for once you start to believe it, you’re sunk."

  6. #306
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    There was a woman who was using the Spincor brace that disappeared as well. I was actually considering trying it just to see if it would reduce pain. I know she took a lot of hits from people. I don't know why. I have a thread where I document my own experience and treatments. Some of them have turned out negatively for me, but I didn't get dissed for trying.
    Be happy!
    We don't know what tomorrow brings,
    but we are alive today!

  7. #307
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    Quote Originally Posted by Susie*Bee View Post
    We just are all in the same boat and need to help each other and listen to each other.
    No, it's absolutely false! I'm not in the same boat as those persons here doing what they are doing.. their reason to be here.. the really immoral work they are doing here since years ago. I'm in the some boat of people being here in order to cope a health problem in the best possible way, regardless the kind of solution selected(surgical, non-surgical..). And there are really good people, great people in this boat, a very big boat.. I also saw here many other good people I met before they decide to leave this forum because Pooka1 and her direct accomplices. She is in other boat, a very different boat of course.

    Quote Originally Posted by Susie*Bee View Post
    My own thought is that EVERYONE should be respectful of others on the forum.
    And how do you expect the people of the other boat may do their immoral work here? Of course it would be impossible for them.
    Last edited by flerc; 05-24-2013 at 12:27 AM.

  8. #308
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    Quote Originally Posted by rohrer01 View Post
    There was a woman who was using the Spincor brace that disappeared as well. I was actually considering trying it just to see if it would reduce pain. I know she took a lot of hits from people. I don't know why. I have a thread where I document my own experience and treatments. Some of them have turned out negatively for me, but I didn't get dissed for trying.
    She claimed she could wear it for two years and get a permanent curve reduction when it is only indicated for pain in adults. It did reduce her pain. There is no evidence an adult can wear a brace for two years and permanently reduce a curve. The moderator admonished her not to make the claim without evidence.

    I am looking forward to foofer's radiographs and those of the other people Tom is helping. I know he doesn't have time to crunch the data but I can table and graph the data for him if that helps.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
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  9. #309
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    Quote Originally Posted by flerc View Post
    She is in other boat, a very different boat of course.
    I don't know what boat you are in but I'm in a cabin aboard the R/V Evidence.
    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. #310
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    Quote Originally Posted by rohrer01 View Post
    categorized the whole forum that way.
    Not the whole forum, that's why I apologized to Susie*Bee. A few people. I was referring to the *disagreement* as surgical vs. non-surgical, not referring to a schism running down the whole forum. But, it's just a few people that I'm talking about. It turned out, that Susie knew what I meant. Maybe you do not?

    Quote Originally Posted by rohrer01 View Post
    AND WORKED IT OUT VIA PM like ADULTS should.
    No, not right. Wildly not right. How does your agreement via PM help the mother just figuring out how to work with a child in a brace, only to discover a thread where bracing parents are accused of lying to their children because their curve advanced. Did you PM that mother as well? How could you? She'd have left before she got to hello.

    How does your agreement via PM help anyone but yourself?

    Quote Originally Posted by rohrer01 View Post
    go to the "teacher" and report it.
    Yes, done. Not at all my first, second, third or even 100th response. But, yes, that is now the only appropriate response. Get it fixed and, if that doesn't work, get out.

    Quote Originally Posted by rohrer01 View Post
    I was talking about refuting ideas
    What ideas? The blind/blind/naked idea? Do you want me to prove that I'm clothed and can see? The idea that parents who consider bracing are cavalier? That's not really an "idea," per se. It's kind of slander. How does one refute that idea? Prove one's other good deeds? Get one's child into the forum so that he can vouch that you're a good mother? I've seen nary hide nor hair of idea in a very long time. Entrenched positions do not equal ideas.

    Here's a question. Why do you think this is a fight between Pooka and I? It's not. I think Pooka is very funny, and I'm not particularly concerned if she thinks I'm educated or knowledgeable enough to think about the things I want to think about. It's not much nevermind, for me. I know what I know. *That's* not the point. Here's the point:

    Fact: Every week, I hear a patient going in or coming out of surgery express their thanks for finding a place where people understand and support them.
    Fact: Every week, someone who is pursuing bracing or exercise leaves the forum and returns in bursts of one of two posts. Person after person pursuing conservative treatment says that they feel afraid to talk about what they're doing in this forum.

    Either that's fine -we just all make nice and send PMs to each other and return the forum to its status quo - or it's not. *That's* the point. And there's only one schism that matters. If you're *fighting* for that status quo, if you're *fighting* to make this a place where surgical patients stay and everyone else feels they must depart, then you and I are not on the same side. Then, yes, I am fighting with you. Not 99% of the posters in here who are just hoping that *we will all just shut up*. But, yes, with you. With Pooka. With anyone who thinks that that status quo is worth fighting for.

    I'm not much interested in arguing anymore. I wanted to create a tiny space where someone made it clear to participants seeking conservative treatment that there's nothing wrong with them. I think I've done that. There's not much point in doing anything else.
    Last edited by hdugger; 05-24-2013 at 09:25 AM.

  11. #311
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    hey Sharon.
    attacks on this forum of a personal nature have become outrageous...
    they should not be allowed, in my opinion...

    i will stand in anyone's boat...and i can't swim...who is attacked...
    so i am IN Sharon's boat...
    that means i am up for attack, i am sure...for no reason other than
    defending Sharon...who needs no defense...
    she is fine all on her own....BUT....
    as a social worker and special ed teacher...I HATE BULLIES
    there...bring it on if you want to...

    personal attacks are sickening...to me and others...

    jess
    Last edited by jrnyc; 05-23-2013 at 11:47 PM.

  12. #312
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    Flerc, I know you're trying to help. Please, don't go after Susie. She's a good soul. Read the post again - I sort of misread it the first time myself. She's not fighting with you. She's trying not to fight with anyone, but she's not fighting with you. Just take my word, OK?

  13. #313
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    what...only go after certain people???
    Sharon is a "good soul" too...
    she just wants to keep it to research and facts and not
    weirdo theories....the words "proved" and "repeatable" come to mind...
    having had to take statistics for 3 different graduate degrees....none
    in physical sciences, thank goodness....i do remember some of what
    research involves...true research, the stuff that can be repeated, verified,
    the stuff that is quantifiable....but then people who know research
    know what it involves...
    why "GO AFTER" anybody here?
    that is the point? why can you not stick to ideas...?

    "GO AFTER" ideas...not people...
    who is anyone here to decide which person is a "good soul"
    i will continue to report bullying posts...
    i believe Sharon never does...
    but i have no problem calling out bullies for "going after" people
    in a personal way...
    didn't like it in schools and classrooms...it is even worse when so called
    "adults" do it
    they are supposed to know better!

    jess

  14. #314
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    Quote Originally Posted by Pooka1 View Post
    I don't know what boat you are in but I'm in a cabin aboard the R/V Evidence.
    You only use that world in order to convince people to not hope anything outside of what you promote, without a prove about what you say when you use it. Just only this fact is something extremely immoral and you know it.

  15. #315
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    Oh, sorry, one more thing for Flerc.

    So, I can't recall what words you're using, but I think we should stick to:

    conservative treatment vs. anti-conservative treatment

    and not anything like surgical vs. non-surgical.

    The first says what we want to say - there are people who are pursuing these treatments and then people who are against them pursuing those treatments (or quite comfortable with them having to flee the forum in order to discuss those treatments)

    I really don't want to leave the impression somehow that we now want to make everyone who's struggling with their surgical decision/recovery/etc uncomfortable. I'd feel just awful if I made a place for the conservative treatment folk and left the surgical folk feeling uncomfortable or out of place. That's the exact opposite of what I want.

    So, conservative treatment vs. anti-conservative treatment. I think that narrows it down correctly.

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