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  1. #1
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    My Experience At CLEAR INSTITUTE!

    Hello. I have posted a few notes here and there, and have read a LOT on this forum. Thank God this is here so that others with like circumstances can have resources, camaraderie and feel like they're not all alone in a bleak, black hole where little information ever gets out. I have learned so much about AIS here, stuff I would prob. never have found any where else, and certainly not from the medical community!! Now it is time for me to detail the experience my 13 yr. (soon to be 14) daughter and I have had at a CLEAR Institute:

    I took my then 12yr. old daughter for an annual exam at her pediatricians where the nurse recommended I see an orthopedic surgeon for possible scoliosis. I didn't know what it was, there was no history of any in our families (as far as we knew; now we know that my husband's grandmother and great uncle had it.) We are all healthy as oxen, and have had very little colds, no ear infections, no allergies, etc., so I thought, "oh yeah, right, well, I'm sure it's nothing..." (I know we have been very blessed and lucky and fortunate about that. I don't take it for granted).
    Last edited by Still Hoping; 03-22-2011 at 10:42 AM.
    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. #2
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    My Experience at CLEAR Institute

    So she was diagnosed at 12 years of age, with angles of 17 Thoracic and 13 Lumbar. She also just started her period a week later. Of course, like every parent on these forums, we were DEVASTATED!!!!!! A deformed spine??? This can't be happening to my dear, sweet, innocent, gifted, brilliant, talented and "perfect" little girl! We have had some very tough times in our lives, but we had never had to deal with anything quite like this before. We were despondent and so depressed. I just couldn't believe it. Of all the people on earth, God would not do this to me or my prescious little angel! Why us??

    I started doing a ton of research online, and the more I looked, the more horrible it got. There are videos on YouTube that are just terrible for parents to see, and are unbelievable. I was shocked. Day after day, week after week. Depression. What are we going to do?? Is this real?

    The scoliosis specialist doctor assured us that there was a 75% chance of it not progressing any more. We held our breath and hoped that we could believe the dr.'s statistics that it wouldn't get any worse.
    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. #3
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    Red face My Experience at CLEAR Institute

    Sorry for going on in this detail, but I haven't seen any other parents go into details about how devastated they were when they first found out. I think a lot of parents must have gone through similar feelings.

    So, I researched online, at bookstores, talked to drs, chiros, yoga and pilates instructors, physical therapists, nutritionists, everything I could think of. Of course we got 3 other doctors who gave us the same diagnosis. Surely there must be SOME better options than bracing and surgery. That's barbaric! Are you kidding me? In this day and age?

    We had her measured again 5 months later. She had increased to 18T 14L. Oh, crap. This isn't supposed to happen. 10 months later she was up to 27T; I don't know her lumbar# because the dr. didn't even bother to write it down on the XRay copies that we had to ask him for. Well, it's getting bad. He originally mentioned bracing at around 25 degrees. I couldn't fathom that. We had to try something now. Waiting just allowed it to get worse. In hindsight, I would strongly tell all parents to act NOW and not wait if they're thinking of trying any alternative methods!!! Really! The money is nothing. Don't try your luck and hope it won't get any worse. That's what they tell you, and IMHO they shouldn't. ALL these alternatives work much, much better and are more effective at lower curve angles absolutely. I wish we'd have acted sooner! We may have had better results.

    My husband and I are both engineers, we think logically and we love science. After learning as much as we could about every alternative treatment out there, the CLEAR Institute's methods seemed to make scientific sense to us, in fact a LOT of sense. We know a lot about mechanics and forces, and the theories really clicked with us.

    So after talking with them, we set up one of their 1 wk. intensive programs. We went to Dr. Dovorany in Green Bay, Wisconsin, about 6 hours away. We felt lucky for that, because, while it's relatively far away, there are only 5 clinics in the U.S. It cost $3000 for 1 wk. + 5 days hotel stay (about $100/day). But how can you compare helping my daughter's spine with money? Back surgery costs between $100,000 and $200,000!!! It was worth anything.

    more is coming...
    Last edited by Still Hoping; 12-09-2010 at 02:44 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..."

  4. #4
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    Quote Originally Posted by Still Hoping View Post
    Sorry for going on in this detail,
    Don't feel like you have to apologize for that. All the parents here can relate.
    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. #5
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    Angry My Experience at CLEAR Institute

    continued:

    I had her XRayed at a different doc's before we left for CLEAR
    By the time we got there, in 3 months her curves had gone from 27T to 32T 18L. Dr. Dovorany measured 33T 18T, which was what the other doc had measured before we left. Ok, so they both got the same numbers. At least he's not BS-ing us. In 3 months, she had gone from 25T to 32T! OMG! That's 7 degrees! In 10 mos, she'd gone up 9 and 2 degrees, almost a degree per month. Now she'd gone up 7 degrees in 3 mos. Oh, this is not good.

    This was worse than we could fathom. Was it even possible to go up so rapidly? So she started the treatment. It was about 5 or 6 machines in 2 hrs. A snack, then repeat a 2nd time for 2 hrs. Break for lunch, then 1 more time 2 hrs. So 6 hrs.

    It would be wrong to call them exercises. She actually does nothing. The machines shake her, loosen up the soft tissue, pull them into a straighter position, elongate her neck, vibrate her, then she balances on a soft disk with a cantilever weight on one side, which they postulate "re-programs" the brain and neuro-musculature to maintain the new position. In the chair, first day, he said her spine is still very flexible and he showed us the XRays. He got her angles down to 0T 0L! But that was with her in the "chair" (the main machine of their entire program). It was very encouraging!

    Now, we're not total idiots, in fact we were extremely skeptical and scrutinized everything from start to finish. We listened to what he told us, and later verified it with Serena. He did not use tricks or weights when he XRayed her. (The one exception being the one in the chair, which he clearly said but that was just to see how much her spine could move).
    Last edited by Still Hoping; 12-09-2010 at 03:47 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..."

  6. #6
    Join Date
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    Illinois
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    My Experience at CLEAR Institute

    continued:

    After a full week's worth of hard work, we got the final measurements on Friday: 33T 18L. Exactly what they were when we started Monday morning! I was completely blown away! Holy crap!! What?? Are you kidding me? I guess this is a total load of crap. Anger! Then he said, "I kept going over it again and again, why was there no improvement? I couldn't figure it out. Then it dawned on me: I measured and she has a 1.5 inch head thrust. Her neck is too far forward, like an old hunched over person. Her head is falling forward and to her right (which we did see in photos.) We must address that forward head position first before there will be any improvement in her Cobb angles." This was too much for me. So many emotions were raging through me, I didn't know what to say. Anger. Disbelief. Sadness. Despondency. etc. He seemed a bit detached. I guess he was expecting me to rage and scream at him (which might have been justified!).

    I did see the XRay that clearly shows her forward head position. He had discovered that Fri. am, so he put a weight on her head in the last session, XRayed her, and the FHP had gone from 1.5 inches down to .8 inches, a significant improvement. My daughter verified that during the XRay there were no tricks going on, she was not in any unusual or different position when they were taken.

    Anyway, we left and drove home. I dreaded telling my analytical hubby the news. We were so hoping for a positive outcome! I thought he would be outraged, what a crock of s***, he's a charlatan, it's a total scam, etc. To my great surprise, he didn't. After cooling off for a week, we called back and discussed it some more. He said if we came back for a 2nd week, he thought he could get much improvement with a head weight on. Now I know this sounds like, what a line, does he think we're stupid?? Maybe we were for believing that this might work, he just wants our money, etc. etc. Would we be the biggest fools in the world?? I honestly can't remember exactly how me and hubby actually reached the decision that yes, we would go back for a 2nd week of intensive treatment. (Are we out of our minds?) It's just that after adding the head weight in one session, he decreased her forward head thrust from 1.5 to .8 inches. I had read research papers about the validity of fixing the FHP. And despite all of this, the theory still seemed to make sense. So, like unbelievable fools, we went back (I know, I know). Please don't personally attack us too much for making that decision!
    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. #7
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    Gotta cook supper, gotta go, been on too long, I will continue later...
    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. #8
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    Quote Originally Posted by Still Hoping View Post
    Surely there must be SOME better options than bracing and surgery. That's barbaric! Are you kidding me? In this day and age?
    I'm going to keep reading, but I'm taking some offense at this statement.

  9. #9
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    Do we have an ending to this story?

  10. #10
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    i wouldn't say "barbaric"....

    you might think, in 2011, science/medicine would have come further...but they haven't...
    wishing and hoping otherwise is just that...wishing and hoping...
    i just hope it is not costing a whole lot of money to end up in the same place you started...

    if there were great alternatives to bracing and surgery, people, especially parents on this forum, would have written about them by now!!

    best of luck
    jess

  11. #11
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    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..."

  12. #12
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    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.

  13. #13
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    Quote Originally Posted by Still Hoping View Post
    So, I researched online, at bookstores, talked to drs, chiros, yoga and pilates instructors, physical therapists, nutritionists, everything I could think of. Of course we got 3 other doctors who gave us the same diagnosis. Surely there must be SOME better options than bracing and surgery. That's barbaric! Are you kidding me? In this day and age?
    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.
    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/

  14. #14
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    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.
    Well if surgery is barbaric then barbarism saved my life twice (so far).

    Actually, I think of surgery as the pinnacle of medicine in terms of skill. The exact opposite of barbarism. There is a reason why orthopedic surgeons are the highest paid specialists. One almost certainly saved the lives of both my daughters. These are the good guys in the scoliosis game who are actually changing the natural history and saving kids from horrible fates.
    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."

  15. #15
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    Quote Originally Posted by Pooka1 View Post
    These are the good guys in the scoliosis game who are actually changing the natural history and saving kids from horrible fates.
    Totally agree.

    A lot of these guys have more cases than they can handle and long waiting lists - they don't need to advertise. Sure, they are making a living but they are offering a proven method for treating scoliosis.

    Then you have those orthopedic surgeons who operate out of Shriners Hospitals and don't charge the patient for their services. Find me a CLEAR pracitioner - or a chiro - who does that
    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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