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  • #46
    Help prevent others from falling for this quackery.

    Might contacting your State Bureau of Consumer Affairs-they usually handle professional licenses- help avoid someone else from falling into your trap?

    If there were insurance payments then the Insurance company needs to hear of this as well as the Board of Medical Examiners if applicable in your state.
    Original scoliosis surgery 1956 T-4 to L-2 ~100 degree thoracic (triple)curves at age 14. NO hardware-lost correction.
    Anterior/posterior revision T-4 to Sacrum in 2002, age 60, by Dr. Boachie-Adjei @Hospital for Special Surgery, NY = 50% correction

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    • #47
      Not that the folks at Clear have actually done any valid research, but I was looking for something else today, and came across a paper on the misuse of the Oswestry Disability Index instrument. Here are a few paragraphs that sum up the problem:
      Use of the chiropractic version leads to an exaggeration of the treatment effect when compared with other studies, and enhances the proportion of patients meeting externally set criteria, such as those set by the FDA for ODI (v1.0 and vv2). It may mislead readers into believing that the reported results are “better” than those reported by others reporting disc replacement or fusion using an apparently similar outcome measure. If this trial is compared in a meta-analysis with others, inappropriate conclusions may be drawn.

      In conclusion, we tamper with these questionnaires to the disadvantage of the whole spine community. If we want better instruments then they should be developed according to well-established rules. Above all, our reports must say exactly what we have done and what outcome measures we have used. Without this practice, we shall not advance clinical knowledge, devalue the reputation of spinal treatments, and waste the enormous cost of these trials.


      --Linda
      Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Twain
      ---------------------------------------------------------------------------------------------------------------------------------------------------
      Surgery 2/10/93 A/P fusion T4-L3
      Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation

      Comment


      • #48
        what was that post towards the beginning of this thread from hope404 about the brain holding the curve by way of some neuromuscular thingamajig... sorry, but i am not bothering to go back and do an exact quote on that...

        maybe i am not smart enuf for my brain to "hold" a curve reduction...or my brain isnt big enuf...or wide enuf...or fat enuf...i'd really like to believe that such a thing was possible...with curves of any size...the day i believe that a 60 or 90 or 100 degree curve can be held at bay by the brain......or 10 degree either, for that matter...

        and...about someone who got a "cure" not writing in again to the forum...i think most any of us would shout it from the rooftops!

        it is becoming difficult...almost painful...for me to read some of the ...."treatments"..... like Clear....... suggested by some on forum...maybe i just dont have the patience anymore...
        i dont want to say what i think of this stuff...i shouldnt use language like that
        everyone can believe whatever they'd like, of course...we live in a great country, i think......but to encourage others to do so...while they could possibly be getting some help from a real doctor................

        jess
        Last edited by jrnyc; 06-26-2010, 08:06 PM.

        Comment


        • #49
          Clear Forum

          I still receive emails from Clear Institute and I sometimes skim them just to see what's going on...I received an email yesterday about their very own forum. I'll probably take a look at it to see what I can find.

          If anyone is interested here's the link:
          http://www.clear-institute.org/Forum...5/Default.aspx

          Maybe someone else has already posted about this, but I figured I'd link it anyway!

          Oh, and something else relevant for this post. I know we're all looking for some real, stable success stories and there seem to be a bunch on there...I found that interesting. I don't know how long-term the success rates are but I'll be curious to check that out.

          Comment


          • #50
            hi curvycakes..
            are their brains "holding" their curve corrections?

            jess

            Comment


            • #51
              brain holding the curve????

              not sure what I wrote back when???

              won't go back and look

              but one thing for sure,

              people with scoliosis do not have a straight spine.

              And we are ALL too dumb to figure out WHY!!!!what started the process...
              why some...not others....

              CLEAR has been very helpful for many people....

              does it cure it ...NO!!!!

              But is it 100% worthless...NO.

              They always encourage early treatment, on small curves, which I think we all can agree on

              I know several people who have been very happy with their CLEAR treatment results...and I know many who have seen minimal results.

              Scoliotic curves
              are very individual and unique.

              If someone wants to try Scroth, Yoga for Scoliosis, CLEAR or any other alternative treatment...I say God bless 'em. Some people have found success and/or pain relief with these methods.

              I'm thankful my daughter has tried various alternative methods(while still growing).. they have helped her tremendously. If I had told her not to attempt various therapies until studies were published we'd still be stuck with P.T. and muscle relaxants

              I'm glad these alternative methods were available to her... what the "expert" recommended, was not working.

              Comment


              • #52
                Originally posted by hope404 View Post
                They always encourage early treatment, on small curves, which I think we all can agree on
                Yes they do and here's why... they know that the vast majority of curves will stay small even if you do nothing. So any treatment, Clear or eating ice cream, will appear to be 80-90% effective to a bunny who doesn't know AND ISN'T TOLD by Clear that most people require no treatment whatsoever. They exploit the bunnies if they don't admit upfront that 80-90% of their patients are wasting their money FULL STOP.

                Now what they need to show is that they are helping the 10-20% of people whose small curves get larger and they especially need to show that they are lowering the perhaps 1 in 1,000 rate of folks who need fusion through their PT approach. They will NEVER show that because they are untrained in research and likely don't understand the number of patents required to show that with any certainty. In the mean time they are raking in the dough from the poor bunnies though Clear should not be treating children FULL STOP again. Chiros are not qualified to treat this serious medical condition.

                This is a BBB issue in my opinion.

                I'm thankful my daughter has tried various alternative methods(while still growing).. they have helped her tremendously. If I had told her not to attempt various therapies until studies were published we'd still be stuck with P.T. and muscle relaxants

                I'm glad these alternative methods were available to her... what the "expert" recommended, was not working.
                Well I'm very glad your daughter got help. Do you care to state exactly how she was helped by Clear?
                Last edited by Pooka1; 06-25-2010, 06:40 AM.
                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."

                Comment


                • #53
                  What is the evidence Clear has ever helped anyone with a larger curve? I suggest there is none.

                  They know this which is why they bang on about early treatment where they can at least appear to be successful in most cases of small curves. But their success rate is identical to the success rate of watching and waiting. The main difference is Clear costs money and wastes time when the kid could be doing something worthwhile like observing nature.
                  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."

                  Comment


                  • #54
                    Linda posted an article entitled:

                    "Revision rates following primary adult spinal deformity surgery: six hundred forty-three consecutive patients followed-up to twenty-two years postoperative.

                    What Clear needs to do is publish a similar study wherein they follow up after 2 years a cohort of over 600 patients who they treated. And they need compare it to what we know about watch and wait.

                    You will NEVER see that study. Andromeda will collide with our galaxy before that study occurs. The sun will blow up before that study occurs. Both those events will occur (not might occur) in ~ 5 billion years.

                    That is the difference between science/medicine/reality in the case of surgeons and surgery on the one hand and pseudoscience/chiro/nonsense in the case of chiros and other untrained people on the other.
                    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."

                    Comment


                    • #55
                      Originally posted by hope404 View Post
                      They always encourage early treatment, on small curves, which I think we all can agree on
                      Sorry, not me. As Sharon mentions, the vast majority of small curves will never progress to the point where they're causing pain or are otherwise in need of correction. As I've mentioned in several other threads, there is a HUGE cost to treating small curves. It's thought that about 10% of the population have curves of about 10 degrees or greater. I think about 90% of that 10% have curves below 20 degrees. If all of those people are treated, the cost of healthcare will skyrocket.

                      --Linda
                      Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Twain
                      ---------------------------------------------------------------------------------------------------------------------------------------------------
                      Surgery 2/10/93 A/P fusion T4-L3
                      Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation

                      Comment


                      • #56
                        Originally posted by LindaRacine View Post
                        As Sharon mentions, the vast majority of small curves will never progress to the point where they're causing pain or are otherwise in need of correction.

                        --Linda
                        Good point. I recall when my son was first diagnosed, it seemed like EVERYONE knew somebody who had had scoliosis as a teenager (their niece, their neighbor's kid, etc.). But when I pressed for more information, in almost all cases I learned they were referring to a 10 or 15 degree curve that never required treatment and never progressed.
                        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/

                        Comment


                        • #57
                          Originally posted by LindaRacine View Post
                          Sorry, not me. As Sharon mentions, the vast majority of small curves will never progress to the point where they're causing pain or are otherwise in need of correction. As I've mentioned in several other threads, there is a HUGE cost to treating small curves. It's thought that about 10% of the population have curves of about 10 degrees or greater. I think about 90% of that 10% have curves below 20 degrees. If all of those people are treated, the cost of healthcare will skyrocket.

                          --Linda
                          Yes plus Clear (or the other nonsense purveyors) can't even make the argument that all small curves should be treated in the hopes of avoiding surgey on the 1 in a 1,000 because there is no good evidence that any conservative treatment, and no evidence whatsoever that any alternative (i.e., non-scientific) treatment like Clear, has ever enabled a single patient to avoid surgery.

                          I suspect many parents would put their kids through an onerous treatment even if only 1 in a 1,000 would otherwise require surgey if the treatment was guaranteed to allow their kid to avoid surgery for life. Even I might consider that but only in consultation with my kid. But that is NOT on the table at present because there is no proven conservation/alternatove treatment for cases destined to be surgical. So it can't be justified not only from a cost perspective but also from a lack of efficacy perspective.

                          Clear are a bunch of chiros running a business. They shouldn't be treating kids.
                          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."

                          Comment


                          • #58
                            CLEAR does work if you really work it!!

                            I have had moderate scoliosis T 25 L 22 my whole life and am now 41 years old. My youngest was diagnosed with scoliosis at age 5 with T35 and L33 in October 2009. After seeing a couple of orthos and doing some research we did the intensive program with Tony Naldo in St Cloud, FL. After 2 weeks of about 8 hours 5x a week my little girl curves were T24 and L22. Her gait visible improved and she didn't say her back hurt anymore. I did it too (for morale support!) and my curves went down to T 18 and L15 after two weeks and I felt amazing after the first week. I told my mom at the time that I felt 10 years younger!! We bought the STC (scoliosis traction chair) for about 4K (best money ever spent!) and continued DAILY home exercises for three months. Did a follow up after 3 months and the corrections for me improved by 2 degrees but hers got a bit worse by 3 degrees. She had grown quite a bit but her curves were still waaay better than before she started. We did another week of intensive and my daughters curves got knocked back to T 21 and L18. Did another follow up in June and she was just a couple of degrees worse but again had grown substantially.

                            Fast forward to today....my little girls curves are improving slowly as she grows. (She hovers between T 18-22 and L 15-18 depending on her rate of growth and the subsequent correction) We continue to do DAILY exercise protocol and follow up weekly with another chiropractor Alex Greaux in Miami who will soon be Clear certified and has a history of spinal correction. To an untrained eye she does not appear to have scoliosis....walks tall and straight , has tons of energy has almost level shoulders. The only thing is if you look closely her right shoulder blade protrudes a tiny bit.

                            As far as I'm concerned I have noticed the following improvements in my health and posture: Improved lung capacity and deeper breathing, my shoulders are now level (my bra strap doesn't always fall down like it did my whole life!), my waist is now curved on both sides instead of just one, my right arm hangs evenly at my hip instead of protruding off to the right a bit, I have improved range of motion with my right shoulder during exercise class and I have also seen my dizzy spells disappear as well as some bladder issues I developed two years prior to doing the CLEAR program.

                            Finally, my oldest daughter who is now 11 years was x rayed at Tony Nalda's office in Feb and had a L10 "C type) curve. I didn't do anything about it and when we followed up in June of 2010 she was L20. We started her on clear protocol using the STC (scoliosis traction chair) and head weight, hip weight, shoulder weight to follow up and after 6 weeks she was L6 and after another 4 weeks of protocol 3 to 4 times a week she was L3. Success! She stopped treatment and will have her follow up in 6 months to see if she has gotten any worse or stayed the same.. Her posture improved a LOT after treament and she didn't lean forward anymore with her head (like Lurch!) and walks absolutely straight now.

                            I think scoliosis is like diabetes or weight loss that must be managed. I don't think it ever goes away forever. It's just like if you want to stay healthy you must eat the right foods...if you don't then you will be fat and unhealthy. You must go to the right people that know how to manage it, (in this case Clear certified chiropractors) and if you do (and are willing to follow protocol!) then surgery or being disabled by a curve is avoidable.

                            Comment


                            • #59
                              Originally posted by ursulaj View Post
                              You must go to the right people that know how to manage it, (in this case Clear certified chiropractors) and if you do (and are willing to follow protocol!) then surgery or being disabled by a curve is avoidable.
                              The only people trained to deal with scoliosis are board certified orthopedic surgeons.

                              This might (or might not) interest you:

                              http://www.scoliosis.org/forum/showthread.php?t=11146
                              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."

                              Comment


                              • #60
                                Very happy!

                                See my post....Clear works if you work it

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