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Thread: My Experience At CLEAR INSTITUTE!

  1. #16
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    Aug 2010
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    Illinois
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    65

    To JessicaNoVa

    Quote Originally Posted by JessicaNoVa View Post
    I'm going to keep reading, but I'm taking some offense at this statement.
    I really meant that I thought bracing was barbaric, not surgery, and I am clearly stating my FEELINGS, not facts. It is just my opinion. I did not say anything to you specifically, so how can you take offense? And we are talking about ONE WORD here! Most of the stuff I wrote were my opinions ( except for the angle numbers and Dr. name and location, etc.).
    Mother of 14 yr old daughter with scoliosis
    Diagnosed at 12th birthday 1/09: 17T 13L
    6/09: 18T 14L Oh God she's increasing
    4/10: 27T 16L My worst nightmare
    7/10: 33T 18L Oh help God!
    7/10: off to CLEAR Institute: We'll see
    10/10: 33T 16L What?
    1/11: 31T 16L 6 months after CLEAR... hhmmm...

    "What a long, strange trip it's been..."

  2. #17
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    Aug 2010
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    Illinois
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    To mariaf

    I meant I thought bracing was barbaric, not surgery. Bracing is a horrible thing for some parents to think about. Sorry if you don't feel that way.


    Quote Originally Posted by mariaf View Post
    Please don't take this the wrong way. I'm simply asking for clarification. You say that surgery is barbaric. Do you feel that way about ALL surgery? If someone has a blocked artery, and they undergo heart bypass surgery, for example - is that barbaric? As much as we'd all like to avoid surgery whenever possible, sometimes there is no other alternative.

    We all wish we could just take our kids to a nutritionist to treat their scoliosis, but unfortunately that is not reality.

    Scoliosis in children needs to be treated by a pediatric orthopedic surgeon.

    Best of luck to you and your daughter.
    Mother of 14 yr old daughter with scoliosis
    Diagnosed at 12th birthday 1/09: 17T 13L
    6/09: 18T 14L Oh God she's increasing
    4/10: 27T 16L My worst nightmare
    7/10: 33T 18L Oh help God!
    7/10: off to CLEAR Institute: We'll see
    10/10: 33T 16L What?
    1/11: 31T 16L 6 months after CLEAR... hhmmm...

    "What a long, strange trip it's been..."

  3. #18
    Join Date
    Jan 2008
    Location
    Oregon
    Posts
    1,161

    Waiting for the conclusion of the story

    Hi there,

    Well, I think we are all hanging in waiting for the end of your experience with Clear--so far it sounds like it didn't help at all.

    I do hope you'll share the rest.
    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

  4. #19
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    Apr 2009
    Location
    Aspers PA
    Posts
    19

    also waiting



    I would really like to hear the end of this story too as I've been considering going to Clear myself. Please let us know.

    THanks

  5. #20
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    May 2010
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    49
    Quote Originally Posted by Still Hoping View Post
    I really meant that I thought bracing was barbaric, not surgery, and I am clearly stating my FEELINGS, not facts. It is just my opinion. I did not say anything to you specifically, so how can you take offense? And we are talking about ONE WORD here! Most of the stuff I wrote were my opinions ( except for the angle numbers and Dr. name and location, etc.).
    Because my daughter is in a brace.

  6. #21
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    Jan 2008
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    NC
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    Quote Originally Posted by JessicaNoVa View Post
    Because my daughter is in a brace.
    There is not a single rational reason you should care about what Hope feels about this issue. Not one. And this doesn't reflect on Hope either.

    Who cares what random people think?
    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. #22
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    Nov 2010
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    British Columbia
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    Yeah, I was just about to post that no offense should be taken b/c often people who are going through a stressful time tend to blurt out all kinds of things, I know I do. I too am frustrated that in this day in age with medical advances that they don't know 'how to cure scoliosis' but it is what it is. Would still really like to hear the end of this story though but I'm guessing that the OP hasn't got an ending to it yet and when she does she will relay.

  8. #23
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    May 2010
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    49
    If I get a "whoohoo" from a random person, I'd feel good. So when I see a "boo" from a random person I feel bad. She feels it's barbaric to brace your child and I feel offended that she thinks my choice is barbaric. Why can't I feel that way? Irrational? Maybe. I can live with that. I've been called worse.

    There's very little support on this forum for bracing as it is and I suppose whenever I come here I'm already in defensive mode.

    I apologize to Hope for commenting on her thread.

  9. #24
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    If my son wasn't so severe he'd definitely be braced. I wonder if the reason why it doesn't appear to be supportive of bracing around here (I'm only going by what you say Jessica b/c I haven't been here long enough to see for myself) is b/c the people who tend to frequent here have more severe case of scoliosis? I don't know, I'm just trying to figure things out.

  10. #25
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    May 2009
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    hi Elisa
    people do what they feel is best for their kids...
    i think "barbaric" is a little extreme, but that is just MY opinion...as opinions go...
    i was supposed to wear a nite guard after my dental braces came off years and years ago ...and i thought THAT was barbaric!! ..i hated it, took it off and threw it across the room in my sleep!!
    as a result, my straight teeth slipped a little bit...but that was the consequence of my actions...and as a teen, you couldnt convince me the nite guard would help me!

    i dont think bracing or surgery is "barbaric,"...i think people do the most minimally invasive of what is out there to help kids...and if/when surgery is the only option left to remedy the progressing curves, then that is what people come to do...

    that is my opinion...simply an opinion..
    i just hate to see anyone beat themselves up because of comments others make, when we are all pretty much doing the best we can...

    jess

  11. #26
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    Quote Originally Posted by Elisa View Post
    If my son wasn't so severe he'd definitely be braced. I wonder if the reason why it doesn't appear to be supportive of bracing around here (I'm only going by what you say Jessica b/c I haven't been here long enough to see for myself) is b/c the people who tend to frequent here have more severe case of scoliosis? I don't know, I'm just trying to figure things out.
    Speaking for myself, it's because a BOATLOAD of experts (surgeons) admit there is no good evidence of efficacy. Some think it works but I doubt you will find one who claims there is evidence it works.

    The BrAIST study managed to find orthopedic surgeons at 19(!) hospitals who thought it was ethical to run a controlled trial on bracing wherein half the kids are randomized to a "no-brace" treatment group. That translates to a lot of orthopedic surgeons with who knows how many hundreds of years of combined experience who have serious doubts about the efficacy of bracing or else they wouldn't participate thinking the study was unethical.

    And there are top names who really believe it works.

    It is all over the map.

    I am familiar with the literature. There is no good evidence it works. That doesn't mean it can't work. The literature is available to everyone. This is very hard research to do cleanly as is the research for PT.

    If they sort out the compliance issues there may be evidence one day that it works but I suspect it won't be clean and will have huge error bars like the recent Katz et al. article where the variability essentially swamps out the minor dose-response curve they found.

    I mean there is some reason some surgeons feel it works but they can't just know it. They have to show it when it comes to a very difficult treatment like bracing. Just 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."

  12. #27
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    I should also add that when my son was originally diagnosed about year ago (over now I'm sure) by his sister, and yes it was his 2.5 year older sister that noticed his back was "off" so we took him to our doc. His back was very off and the doc rambled through the next step: Wait and see, but I could tell he knew we were beyond that, 23/hr a day bracing, (umm, he's 14 and he's not complying already) or SURGERY! Huh? Needless to say I was overwhelmed with the few choices and still am.
    Last edited by Elisa; 12-13-2010 at 11:17 AM.

  13. #28
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    i dont know ANY kid who, especially at age 14, is going to be pleased with a 23 hour a day brace! i think i ws 14 when i threw the nite guard across my bedroom...and i was only supposed to wear that on my teeth for 8 hours a nite!

    jess

  14. #29
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    If I'd have found out earlier when my son's spine was slightly twisted and had been informed about the options and had done research about how fast the spine could deviate from the norm, I'd have braced I think. But like I said, my son was NOT compliant back then (he might be now) so it would have been a worthless cause.

  15. #30
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    Nov 2010
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    Honestly, in my OPINION, I am sick of listening to poeple on this site talk about how ineffective bracing is.

    There are people on this site and off this site that have had positive results with bracing just as there are many people who live in constant pain years after their spinal fusion, so should we start ranting to stay away from surgery?

    If hours per day in brace increases the success rate of bracing, then why would anybody only try night time bracing as a means to prevent a curve from progressing?

    What do these wonderful orthopedic surgeons do for a living, oh yeah... SURGERY.

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