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Thread: My Experience At CLEAR INSTITUTE!

  1. #76
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    Quote Originally Posted by Still Hoping View Post
    Yes they recommend treatment no matter what. They emphasize don't wait and watch. Start now. They say they get much better results with curves under 25 degrees. So ultimately, the test is optional.
    Natural history also gets much better results with curves under 25*.

    The key question is does Clear improve upon the already good track record of the natural history for curves under 25*. To show that would require a careful long term study with HUGE numbers of patients coupled with a control group that was equally huge. Clear has never done that so they can't know if they are doing better than natural history FULL STOP.

    Either they don't realize this is the actual issue or they deliberately don't tell the bunnies that is the actual issue.

    I'm beginning to think they would claim that Clear was the reason any and all curves under 25* did not reach surgical territory when in fact doing NOTHING will result in the same thing at NO COST either in time, money or radiation exposure.
    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."

  2. #77
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    Smile

    [QUOTE=leahdragonfly;113427]
    Quote Originally Posted by Still Hoping View Post
    <He took 5 the first week and 4 the second wk. He didn't take all of the possible XRays they use. These were of her spine and FHP before and after treatments. Here is a quote from their website Clear-Institute.org: these XRays give exposure " totalling 292 mR of radiation (by comparison, according to the American Nuclear Society, www.ans.org, the amount of naturally-occurring, environmental radiation we are exposed to every year is 360 mR<snip>

    Still Hoping,

    I am not trying to scare you, but the Clear people are downplaying the excessive amount of radiation exposure children are receiving in the course of their treatments. There is no "safe" dose of ionizing radiation know to humans. Period. All x-ray exposure comes with some risk (we are guessing it is small, but the point is there are no studies to determine a safe dose of radiation. I wonder why!). Each x-ray taken should provide specific information that can effect treatment--there needs to be a benefit from each and every x-ray that outweighs the risk. And the risks are not insignificant: cancer, leukemia, cataracts, thyroid disease, reproductive problems such as birth defects. Remember, a girl baby is born with every single ovum she will ever have, so all those future grandbabies are in there being x-rayed, too, unless extremely accurate sheilding is employed with every x-ray.

    The thing that bothers me so much about the practitioners who downplay the x-ray exposure is they compare it to all the background radiation we receive. But guess what everyone, that means these children are already receiving the background radiation daily, then the excessive x-rays are all piled on top of that. Anyone who thinks it is not important to minimize exposure to unnecessary x-rays is fooling themselves. It can take 20-30 years for these cancers from radiation exposure to manifest themselves, and by then, all those x-rays taken at Clear have been long forgotten.

    All parents need to think about this seriously, and take the initiative to protect their children from unnecessary x-rays.

    BTW, I work in interventional radiology/cardiology so I am well aware of the effects of excessive radiation. It all boils down to risk vs benefit. With Clear I don't see where the benefit is.

    Off my soapbox now.
    I was about to say that I don't buy what CLEAR has on their website, minimizing the risk of radiation exposure to children.

    But you said it much better, Gayle :-)
    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/

  3. #78
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    Quote Originally Posted by Pooka1 View Post
    Natural history also gets much better results with curves under 25*.

    The key question is does Clear improve upon the already good track record of the natural history for curves under 25*. To show that would require a careful long term study with HUGE numbers of patients coupled with a control group that was equally huge. Clear has never done that so they can't know if they are doing better than natural history FULL STOP.

    Either they don't realize this is the actual issue or they deliberately don't tell the bunnies that is the actual issue.

    I'm beginning to think they would claim that Clear was the reason any and all curves under 25* did not reach surgical territory when in fact doing NOTHING will result in the same thing at NO COST either in time, money or radiation exposure.
    B-I-N-G-O

    I have always been skeptical of any treatment that claims it can prevent very small curves from increasing.

    Most curves of 15 or 20 degrees won't progress anyway.
    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/

  4. #79
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    i don't think there is any way of knowing...
    my curves were tiny when i was a kid...not even diagnosed..but there...

    they increased as i aged...diagnosed at age 31...

    jess

  5. #80
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    Hi Jess,

    It's true, there is no way of knowing or predicting what every curve will do. I do believe, however, that many small curves (perhaps the majority) never progress to the point of requiring surgery.

    When David was first diagnosed, I can't tell you how many people weighed in to tell me that they (or a relative) had been told as a child or a teen that they had a 10 or 15 degree curve which never increased or required treatement. So, this is totally anecdotal of course :-)

    Either way, the bottom line is this - does CLEAR alter the natural history of one's curve. In my opinion, there is no proof that it does - and the cost (and more importantly, the radiation exposure) concerns me.
    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/

  6. #81
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    Quote Originally Posted by Still Hoping View Post
    Thanks, Dr. McIntire. I started reading your post under misc - research (haven't finished it all yet). Your research sounds fascinating. What an exciting area to be doing post graduate work in! I hope you return in some fashion to muscle physiology. What area is your postdoctoral fellowship in?

    I am currently exploring RST next for my daughter and your input confirms that this is a very promising area. I know you will make great contributions to these forums, for the benefit of so many. Please continue to visit! Thanks

    yes, biannual means once every two years!

    I did the RST as my graduate work and I'm currently doing my postdoc work in muscle physiology. Specifically we're looking at the molecular pathways involved in muscle wasting and muscle building in various wasting conditions/disease states, e.g. renal failure or bed rest. As well, we look at the role that various interventions, e.g. nutrition, exercise and some hormones, play in overcoming muscle wasting.

    To me, the RST work does show promise and from a physiological point of view it makes sense. But I also feel the technique is quite rough around the edges. Regardless, I think strengthening the musculature of the spine has been severely over-looked in the AIS world. Whether or not strengthening alone can alter the natural history is yet to be determined. But I think putting a kid in a brace or having them "wait and see" without at least addressing the core muscles and stabilizers makes absolutely no sense.

  7. #82
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    thank you

    Thank you for finishing your story. I'm just now stopping back in. I am 31 and I wore a Charleston Brace from the time I was 11-13 or so. My curve did progress during that time, but they thought it slowed the progression. My curve has also changed since then. My curve is now a 38 in the middle and 13 at my neck. I have alot of things that have come up due to my scoliosis and living "crocked" my entire life. I have pain EVERYDAY of my life. SO i am constantly looking for a way to take away that pain. I don't think CLEAR would work for me...after reading all this. I know every advirtisement tries to sugar coat things. I'm glad you shared your story. ALSO, I have had NUMEROUS xrays and radiation exposure, which was a great concern, because my mom is a breast cancer survivor. It still concerns me..but in order to get help and find answers you almost have to be exposed to it.

    Again, Thanks for sharing!
    Julie

  8. #83
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    hi Maria
    oh, i don't believe in Clear...i don't like it, and i have some opinions of it that might not be printable...

    that said, i do know in my own case that my curves started out extremely small and progressed by age 31, and then again as i got older...

    i just meant that i can understand parents wanting to check out all kinds of scoli tx for their kids, because those parents don't know if their children will be the ones, minority though they may be, who will have curves that do progress!

    i just think that when they look for tx, they shouldn't look at Clear!

    hope the family is well...

    jess

  9. #84
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    Hey Jess,

    Oh, I knew what you were saying. I know you do not endorse CLEAR - you are too smart of a cookie for that :-)

    And I'm sure you are far from the only person whose curve had a mind of its own. That's what is so frustrating about scoliosis - it doesn't matter what happens 'most of the time' - the path that any given curve is going to take, unfortunatley, cannot be predicted.

    Happy Holidays and all the best in 2011!!
    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/

  10. #85
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    that is so true, Maria...who knows for sure which kids will progress, which won't...if only there was some kind of sure thing formula to use!

    i do realize now that my sisters are bigger, taller and stronger than me...i am the "runt"...thin, small boned (very), just plain weaker physically than they have ever/always been, even though i've been trying to compensate by being "tougher" mentally (ha!) since i can remember! they both have a curve in their spines too small to really measure...maybe 3 degrees....so to me, the potential was there, but it never happened...ahhh, the luck of the draw....

    happy holidays to you and the family, too...

    jess...and Sparky


    http://i1085.photobucket.com/albums/...g?t=1292298612

  11. #86
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    Yes, we can't forget Sparky!! The other day marked the one-year anniversary of when we adopted our puppy :-)

    Funny, Jess, both my boys are thin (the way their father was built when he was younger), but my older son is taller and David is more on the petite side, a little small for his age. My daughter is average or maybe even a bit bigger than average in terms of height and build.

    So, I guess I could say David is the 'runt' of the litter in our house too - hmmm, I wonder if there is anything to that......

    Again, the happiest of holidays to you (and Sparky!)
    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/

  12. #87
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    To Kidbusiness2

    Quote Originally Posted by kidbusiness2 View Post
    I am 31 and I wore a Charleston Brace from the time I was 11-13 or so. My curve did progress during that time, but they thought it slowed the progression. My curve has also changed since then. My curve is now a 38 in the middle and 13 at my neck. I have alot of things that have come up due to my scoliosis and living "crocked" my entire life. I have pain EVERYDAY of my life.

    Again, Thanks for sharing!
    Julie

    Hi Kidbusiness2. I am constantly worried about if my daughter will have constant pain in the future. It rips me apart just to think about it. I'm sorry to hear that your curves progressed. What do you do to handle the pain? Did you wear your brace "faithfully"? For how many hours per day?

    Every case is so unique, it's hard to evaluate the efficacy of any treatment. Grrrr...
    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..."

  13. #88
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    I hope everyone had a Merry Christmas, Happy Holidays and Happy New Year!
    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..."

  14. #89
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    Well, I take her in for XRays in a week or so. I will post the results here. Wish us luck!
    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..."

  15. #90
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    Hi Jess

    [QUOTE=jrnyc;113522][COLOR="#4169e1"]
    {oh, i don't believe in Clear...i don't like it, and i have some opinions of it that might not be printable...}

    I would be interested in your opinions and how you got them ( the mostly printable ones anyway!!!) Did you have bad experiences with Clear? Why do you feel that way? Thanks

    (Oops. I did that wrong...)
    Last edited by Still Hoping; 01-19-2011 at 03:32 PM.
    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..."

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