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Thread: My Experience At CLEAR INSTITUTE!

  1. #91
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    May 2009
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    if that was to me...
    i do not believe the Clear method, or a chiro, or exercises, will fix scoli for anyone, or reduce scoli curves...for the same reasons everyone else believes it is quackery!

    if you click on advanced search at the top right of the page, you can type in Clear Institute and read the reasons most folks think Clear is a bunch of charlatans, taking money from desperate people....

    everything i have read of the methods rings of snake oil...false claims...false hope!

    but that is just my opinion...and you did ask...

    jess

  2. #92
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    Jess,

    Don't hold back so much... say what you mean! (smiley face).

    They are battling not only scoliosis but their chiro roots. That is a very tall order. I think they get a little more time to publish their results on whether they can beat natural history measured at the point of skeletal maturity. They will need to post the radiographs I think and not just summary articles because of the quality issue with chiro school.

    If no pub materializes in a year or so then we can start speculating why not.
    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."

  3. #93
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    i wish the best for all scoli patients, and understand the fear of the parents who sit and hope and pray for an answer that is simpler and less invasive than surgery...

    but i do not like seeing people given false hope...i think that is very cruel!

    personally, i do not believe in chiros...that is my right, my belief and good for me...

    i will not tell others what to do...
    it is for each to decide for themselves...

    but i will give my opinion, esp if asked!

    jess

  4. #94
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    Oh you are on very firm ground about traditional chiro being pseudoscientific nonsense (please pardon that redundancy). Chiros should never be treating kids much less kids with scoliosis. Their training in chiro school has been exposed as being piss-poor so they have a lot to overcome there. I think if they produce anything scientifically defensible it is because they pulled themselves up by their bootstaps and NOT because of any "training" they received in chiro school. Dovorany seems to be honest and know the score at least and I assume he is that way with parents.

    I agree that at present CLEAR is a false hope because they haven't ponied up any data when there probably has been enough time to do so if they had results but I am not sure about that.

    While I think adults going to chiros for scoliosis is a "financial Darwin award" situation as opposed to a BBB situation, kids being treated, especially if not also in the care of an orthopedic surgeon rises to the level of crisis mode.
    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. #95
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    Aspers PA
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    Still Hoping...



    STill Hoping,

    Yes, it is hard to think about your child having constant pain in their future. I wonder all the time if my parents made the right decision choosing not to have surgery for me. BUT, I know they did what they thought was best and from all the reading and research I'm doing, people with and without surgery still have pain.

    I have used Chiropractic care for many years to realign myself & lower the pain levels and that worked for many years. High School until about 2 years ago.

    For the last 5 years I have been on medications to help with pain, muscular & nerve pain. I am currently on Neurotin, & Ultram. They help some, but I still have pain everyday. Some days worse then others and I can not work a full time job OR do things in life with my own children due to the pain.

    I wish you luck! I wouldn't want to sway anyone in their choice of treatments, because everyones scoliosis is very different and what works for one, might not work for another.

  6. #96
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    Aug 2010
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    Illinois
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    Smile Six Months After Clear

    As I previously mentioned, in April '10 my daughter's angles were were 25T 16L. In July, she was measured at 33T 18L. Since April, they had gone up 6-7 degrees in 3 1/2 months. So it looked like she was on a path of very rapid acceleration. It was very shocking and scary to me to see that her angles had increased so rapidly. Then, she was measured again on Oct. 19 as 33T and 16L, the same as 3 months earlier (well, two degrees lower lumbar, well within the margin of measurement error).

    I am so excited I can hardly stand it! We took my daughter to her orthopedic surgeon yesterday and had her XRayed. Part of me realized that it could be bad news and that her angles may have increased, maybe to 37 or more degrees. Thank God, he walked into the room and said, "well, I've got some good news for you!" He did a double-take at the XRay. He looked puzzled, like he couldn't believe it.

    Her angles were 31T 16T!! He measured again, choosing slightly different vertebrae to measure from (that's where the margin of error comes in), and he got 29T! In 6 months they have not increased at all!! It's fabulous news! Now I know, they haven't decreased any, but it is astounding to me, and extremely unlikely that they just abruptly stopped increasing on their own (not to mention, at exactly the same time period as when she was doing Clear). If you can picture a graph of the trajectory she was on, it was rapidly increasing, and accelerating. Then abruptly it completely plateaued off to a horizontal line.

    It is the only good news we have had in 2 years since finding out she has scoliosis. I know it has only been 6 months, but we will take any good news we can get! If she can stay here, then I know at least that she won't need a brace or surgery (her doc said so). I know it's a big IF, but at least it's positive and a sign of hope and I don't want to minimize it.

    Once again, I think it's still too early to state that Clear is working definitively, but personally I do think it is too great of a change in trajectory for it to be merely coincidence. A full year's worth of no increase would convince me that, undoubtedly, in our case (not all cases) Clear is working. And even then, it still would not come close to reaching the mark of scientific proof, by any means! I think everyone understands that.

    But on the other hand, who cares? If someone told me that walking across fire or doing jumping jacks would help my daughter's scoliosis, I would try it. And then if it did help it (for 6 months), I would do it for the next 6 months! So unfortunately from her point of view, now she has to continue to do the "chair"! If she had increased any, I would have given it up at this point.

    I do feel that we went into this whole Clear adventure with our eyes wide open. I don't think they tried to promise us that this would cure her or even help her with 100% certainty. We knew, worst case, that we might just be throwing money away. But the same is true with ANY technique one might use. There are NO guarantees with ANY methods, not even the medical ones. There is no technique that works 100% of the time or with 100% of the patients.


    We prob won't have her measured again for another 6-12 months. She will continue with this for as long as I can get her to. That is a hard battle sometimes and that will be the challenge. She is so stubborn!! (don't know where she could have gotten that from...) And honestly, I don't see why. I mean all she has to do is sit in a chair passively for 30 minutes, and then stand on a disk with a weight on her side for 15 minutes. It doesn't hurt at all and she doesn't have to exert herself in any way. She can zone out, listen to her Ipod or stereo, watch TV, read a book, or play an electronic hand-held game.

    I hope she continues with it, and I pray that next time she is Xrayed it will be more good news again! Wish us well and Blessings to all!
    Last edited by Still Hoping; 01-19-2011 at 03:40 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..."

  7. #97
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    Illinois
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    I suppose others could interpret it differently. I suppose we will have to see what it is like in 6-12 months. We are hoping.
    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..."

  8. #98
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    That's really good news!

    Did the surgeon say if she was skeletally mature yet? Once she is then will you let her stop the PT?
    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."

  9. #99
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    Skeletally Mature

    Doc said she was not skeletally mature yet. He said she is a Risser 2. Two yrs ago he said she was a Risser 0. I am surprised that he doesn't think she is Risser 3 or more, because she is developed a lot. She got here period exactly when she turned from 11 to 12, which is way earlier than I did. She is almost 5'3" and I am 5'4" and he said that she won't get taller than me, but he said her "growth plates weren't mature yet." So that is a little contradictory, I think. I wonder how subjective that is because another orthopedist doc we took her to 6 months ago said she was almost skeletally mature because her growth plates were almost done growing!!! So go figure. There's the medical field for ya! (just kidding). And they keep changing the age at which they say girls reach skeletal maturity. In the beginning (09) they said girls stop growing at about 13 - 14 yrs. Now he says it's 15 -16 yrs. I think they start out by telling the devastated parents the low number to lessen the blow.

    Does anyone have some wisdom on these Risser scores? Like, how specifically are they measured and how accurate they are?
    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..."

  10. #100
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    As far as I know, the Risser sign is not very accurate. The much more accurate skeletal age indicator is a wrist radiograph and the Tanner-Whitehouse (or visa-versa) scale.

    Also, I have heard that chronological age is more accurate than plenty of other indicators.
    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."

  11. #101
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    Aug 2010
    Location
    Illinois
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    Once she becomes skeletally mature, I would like her to continue it a little longer ( a year or two) because from all that I've read, these curves can still increase, even for the rest of their lives. I'll just feel better if she stops the "chair" at age 18, but I'd be amazed if she goes that long. Why can't they just do what we tell them to do, and do what's good for them??!!

    She has missed the last 3 days doing her chair, mostly because of some tight scheduling. I hope that doesn't hurt her progress...
    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..."

  12. #102
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    Aug 2010
    Location
    Illinois
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    Schroth Method

    I would love to try the Schroth techniques next. There seems to be some positive aspects about it. But from what I understand, it will cost thousands more to get proper training with that. I wonder why it is so expensive?? Plus hotel...

    And I wonder how my daughter would feel about that?
    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. #103
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    Jan 2006
    Location
    PA
    Posts
    778
    A funny thing happened the other day. I received an e-mail in reference to the Scoliosis support group my daughter and I run. It was from a local doctor asking if the group was still active and wanted to know my thoughts on him possibly starting a support group in his area....maybe 25-30 miles away from where I run mine....or joining forces. I was so excited! Yes, finally someone to help me get my group up and running again!

    So I give the guy my phone number and he calls yesterday. Asks a bunch of quesitons, how many people in your group, is there a way I can still contact them, why do I think my group became inactive, would I like to move my meetings to his office, etc. etc etc. Then he FINALLY gets around to the truth.....he asks if I've ever heard of CLEAR Institutes! Surprise!

    We had a long conversation and he asked some very direct questions both about my group members (which I didn't give him) and about my daughter's back, which I discussed somewhat. In his opinion, my daughter's curve before surgery was extreme because it was over 40*. Wow, never heard that before! He told me that rods usually break. Again, never heard that before either. He didn't want to focuse or comment on Jamie's Kyphosis, though, so not sure if CLEAR even treats Kyphosis. Long story short, from the information he gave me, I guess I should plan on Jamie needing another spinal fusion since rods usually break because of the inbalance of something or another and that most people don't go through a second fusion because they know what it involves when they could have avoided surgery in the first place and gone to CLEAR. Hmmm....think I got that all right.

    Oh, it gets better! He loved the fact that my meetings are held at Hershey Medical Center, HMC, (big trauma hospital in Hershey PA). He asked if I would be willing to let him come to one of the meetings to talk to my group! He said that orthopedic doctors aren't willing to tell their patients about CLEAR because if they go to CLEAR instead of having a spinal fusion, the doctor would miss out on thousands of dollars! He went on to say, because of this, if he called HMC, he would never be allowed in the buidling to talk to their patients. However, he could get his foot in the door of the hospital if I allowed him to talk at my group! I was nice. I didn't say yes or no, but agreed that people need to check other options. I made it clear that I don't know that much about CLEAR so until I do I can't recommend it or discuss it with my group. I might except his offer to visit his office just out of curiosity though. How does he think I'm going to offer this stuff to my group when what he told me about my own child is way differnt from what five orthopedic doctors told me? Why would I push his info when he didn't even want to address my child's Kyphosis?

    Knew you would love this! Have a great day.

    Mary Lou
    Mom to Jamie age 21-diagnosed at age 12-spinal fusion 12/7/2004-fused from T3-L2; and Tracy age 19, mild Scoliosis-diagnosed at age 18.

  14. #104
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    Aug 2004
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    ny
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    UNBELIEVABLE, MARY LOU!!!

    I had a similar experience a few months ago. One of the CLEAR practitioners contacted me to see if he could join the VBS group. I explained to him that our group is just for parents seeking information and support and, of course - after consulting with the other moderators of the group - we denied him access.

    Sounds like the guy who contacted you was even more persistent - I guess they are getting more pushy (or desperate) as time goes on.

    Really leaves a bad taste in your mouth about CLEAR and everything and everyone connected to it.............
    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/

  15. #105
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    Quote Originally Posted by Snoopy View Post
    He said that orthopedic doctors aren't willing to tell their patients about CLEAR because if they go to CLEAR instead of having a spinal fusion, the doctor would miss out on thousands of dollars! He went on to say, because of this, if he called HMC, he would never be allowed in the buidling to talk to their patients.
    I wonder what his response would be with regard to the doctors at all of the Shriners hospitals who don't ask for money - why aren't they all referring patients to CLEAR??

    And THANK HEAVEN he would 'never be allowed in the building'. Although, I give most patients and parents credit for being too smart to fall for this load of bull!!

    Disgraceful.
    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/

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