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Thread: My Experience At CLEAR INSTITUTE!

  1. #46
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    I'm with Leah on the danger of all the xrays. The benefit of any conservative treatment *should* last long enough that it can be picked up during her regular exams. If you have to measure the effect 5 minutes afterwards in order to show any result, I wouldn't consider that an effective treatment.

    On the head forward stuff, we also found that addressing my son's head forward posture was really helpful. His treatment cost $225 altogether (3 visits to our massage person at $75 per one-hour session; plus exercises and stretches that he does at home every day), and she managed to get him from having his head 4 inches in front of where it should be back to 1 inch in front of where it should be. He's held that improvement for over a year now.

    I don't know how important the head forward stuff is on the curve itself, but it was a huge help in how he felt physically and how he felt about himself mentally.

    If anyone is interested, I could probably get my massage person to describe generally what she did, in case someone else has a massage therapist they trust and want to try it.

  2. #47
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    Quote Originally Posted by hdugger View Post
    I'm with Leah on the danger of all the xrays. The benefit of any conservative treatment *should* last long enough that it can be picked up during her regular exams. If you have to measure the effect 5 minutes afterwards in order to show any result, I wouldn't consider that an effective treatment.
    I'm interested to see Smith's response on that.

    On the head forward stuff, we also found that addressing my son's head forward posture was really helpful. His treatment cost $225 altogether (3 visits to our massage person at $75 per one-hour session; plus exercises and stretches that he does at home every day), and she managed to get him from having his head 4 inches in front of where it should be back to 1 inch in front of where it should be. He's held that improvement for over a year now.
    That's great. By the way I was in no way downplaying cosmesis here. Cosmesis is a big reason why my second kid wanted fusion surgery when she saw the results of the first kid.

    My point was that certain Clear guys have made claims that FHP is some type of driving "environmental" variable of a structural curve in that addressing FHP can be used to address a structural curve (or at least must be addressed ahead of hoping to make progress with a structural curve). If there is evidence for that I would like to see it. Morningstar has pointed out that boatloads of people have FHP without having scoliosis. That doesn't mean there is no connection between FHP and scoliosis but it does raise the bar for high quality evidence showing the connection.
    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. #48
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    Off the Clear topic, but if we didn't have the risk of PJK to worry about, I'd at least be on the fence about whether to strongly consider surgery. It kills me that he can't even rely on surgery to fix his problems.

  4. #49
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    Well, he seems to be a PT success story and it is far from clear hat his curve has progressed in the last several years. On both counts, he may never need surgery.

    What do you conclude his risk of JJK to be?
    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. #50
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    I previously wrote:

    Quote Originally Posted by Pooka1 View Post
    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.
    Apparently they were working with orthopedic surgeons from at least 26 institutions, not 19 as I stated. I guess more joined after the initial recruitment period.
    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."

  6. #51
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    Quote Originally Posted by Pooka1 View Post
    Well, he seems to be a PT success story and it is far from clear hat his curve has progressed in the last several years. On both counts, he may never need surgery.

    What do you conclude his risk of JJK to be?
    Yes, that's the good thing. I am seriously considering whether to do SEAS in order to decrease the curve. That would be a good year or two away, but with the surgical risk, I think we have to consider it.

    On what the risk is? I don't know. I'm guessing about 30%, based on what I've read and seen, but I'd have to talk to our surgeon to really nail it down. As these cases settle out without further surgery, I feel a little better. Maybe in a year or two it will all seem like some expected but workable outcome.

    On a somewhat related note, he's actually going into surgery on Thursday, but it's jaw surgery for an open bite. So, he'll have some experience with fusing bones, bmp, and titanium plates, just on a smaller scale and with fewer risks

    Anyway, wish us luck. I'm stressing like nobody's business, but he's completely calm. I have no idea who's genes he have, but they're not his dad's or mine

  7. #52
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    Quote Originally Posted by Pooka1 View Post
    Well, he seems to be a PT success story and it is far from clear hat his curve has progressed in the last several years. On both counts, he may never need surgery.

    What do you conclude his risk of JJK to be?
    Ah that should be PJK as hdugger knows.
    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."

  8. #53
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    Quote Originally Posted by hdugger View Post
    On a somewhat related note, he's actually going into surgery on Thursday, but it's jaw surgery for an open bite. So, he'll have some experience with fusing bones, bmp, and titanium plates, just on a smaller scale and with fewer risks
    My one kid was referred for that surgery from what you describe and I declined it given she went through the fusion and I was not wanting her to have another surgery especially in the mouth area that might raise her risk of systemic infection.

    We went with TADS, an othodontic device that screws into the jaw and is not noticeable. They seem to be working.

    Anyway, wish us luck. I'm stressing like nobody's business, but he's completely calm. I have no idea who's genes he have, but they're not his dad's or mine
    Good luck! He adn you will be stars!

    If they are not your genes or your husband's then that only leaves the milkman, yes? (smiley face)
    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. #54
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    Quote Originally Posted by Pooka1 View Post
    We went with TADS, an othodontic device that screws into the jaw and is not noticeable. They seem to be working.
    yeah, we had one (extremely young) surgeon recommend that, but when we went to our local teaching hospital, the surgeon there looked in my son's mouth and said "well, in his case, that would be a little . . . heroic."

    So, is dental plus spine twisty thing related to connective tissue disorders? Or are our kids just lucky

    On the milkman: Only if we had the world's smartest milkman.

  10. #55
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    jrnyc wrote:

    Quote Originally Posted by jrnyc View Post
    so did the cost come to over $3000 if you add in the price of the chair...at least until such time as you sell it back, at a loss...??

    if the improvements don't hold..do you think you would do it again...?
    am wondering if your child will continue with compliance...nothing insulting meant by that...i just know how tedious exercise can become for some people...and kids get busy with other things in their lives...

    best of luck with it...
    jess
    Yes, it came to well over $3000. The first wk. cost $3000. The 2nd wk. cost $2000. The chair cost $3980. So a lot of money. Surprisingly, our insurance pays for some of it, so that helps. As I understand it, insurance companies will only pay for one full chiro treatment per day. She had 3 per day. So subtract off about $1700. We are waiting on reimbursement for the chair. Don't know how much they will pay yet.

    If the improvements don't hold then I definitely would NOT do it again. That to me would show that the method doesn't work for our case. So we will see.

    Compliance is a whole other issue! She really wanted to quit in Dec. By some miracle we got her to continue. But it is hard and it takes a lot of reminding and pleading to get her to do it. She still is in denial about it and how serious it is. That is a problem, no doubt about it.

    As you said, you wanted to rip your (braces) head gear off and throw it onto the floor. And that's just at night! Yes, it is hard to get a 14 yr. old to do anything they don't want to! I know I would not wear a brace at that age, so I totally understand. I myself love to exercise, but her not so much. So far she is resisting everything.

    Thanks Jess
    Last edited by Still Hoping; 12-15-2010 at 10:06 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..."

  11. #56
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    My Daughter

    My daughter is extremely busy, too, as most teenagers are. Her schedule on Thurs. sometimes is ridiculous. And I deliberately try to plan so that they are not overly scheduled. I don't believe in that. And everyone needs a little time for "decompression", even teenagers!
    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. #57
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    XRays

    Quote Originally Posted by leahdragonfly View Post
    Hello,

    I am so concerned about the number of x-rays that you mention your daughter having--doesn't that excessive amount of radiation exposure worry you, especially since it did nothing to improve her curves?

    I sincerely hope that her breasts and ovaries were carefully shielded for every single x-ray. This is something we have had to fight for at times with my daughter (even at reputable orthopedic surgery offices). I don't even allow my kids to have "routine" dental x-rays, since all this radiation exposure in childhood can add up.
    Yes, I am extremely worried about all the XRays. But we wanted to get data so we could determine as best as possible whether CLEAR is having an effect or not. I have talked to some people who are, in my opinion, a little too overly-concerned about
    XRays ( just my OPINION, no insult to anyone ). All doctors and dentists I have ever spoke to have sworn that it is trivial and that you get much more radiation on one single airplane ride. I didn't believe that for a while, but I've heard it so many times that I think maybe they are right. Of course I would rather not, but I feel that the condition warrants it.

    And yes, they do always cover her uterus and lower with lead shields. What can you do? After this yr we will prob only have it done twice a yr. which is about what you would get from a doctor's XRays in one visit per year (average) . Or less than what they take at the dentist's ( they take so many ). Hopefully, the doctors are right. Again, IMHO, the slight risk is justified. May not be for everyone, though.
    Last edited by Still Hoping; 12-15-2010 at 10:27 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..."

  13. #58
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    Quote Originally Posted by Still Hoping View Post
    All doctors and dentists I have ever spoke to have sworn that it is trivial and that you get much more radiation on one single airplane ride. I didn't believe that for a while, but I've heard it so many times that I think maybe they are right. Of course I would rather not, but I feel that the condition warrants it.
    Just for informational purposes. Here are some radiation amounts to put things into perspective. We have to put these things into consent forms and justify the amount of radiation any subject will be exposed to.

    Screening at an airport X-ray scanner - .02 microsieverts

    Banana - 0.1 microsieverts (yes bananas are radioactive )

    Negligible risk - 10 microsieverts/year

    Transcontinental flight (one way) - 20-30 microsieverts

    Chest X-ray radiation exposure - 100 microsieverts

    Mammogram - 700 microsieverts

    Average yearly radiation exposure from the environment - 3000 microsieverts

    Abdominal CT scan - 10,000 microsieverts

    Enough to cause radiation sickness - 1,000,000 microsieverts

    Enough to cause death - 6,000,000 to 8,000,000 microsieverts

    So, this does not agree with the doctors that say an airplane flight is much more than a chest x-ray. Still, it's equal to only about 10 days worth of background radiation. Not an enormous amount and would be considered "minimal" risk. Not trying to minimize the risk, just giving some basic information and why some doctors might say certain things.


    Further reading: http://www.radiologyinfo.org/en/safe...m?pg=sfty_xray
    Last edited by skevimc; 12-16-2010 at 01:53 PM. Reason: Removed the part about radiation risk from x-rays being transient. Followed up in a subsequent post.

  14. #59
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    Thank you for posting that about exposure. We are extremely careful about the radiation both our kids get since our introduction to scoliosis. I've seen some of those numbers but not all (bananas somehow escaped my attention). The cumulative effects of radiation are of the most concern to me. Is there any more you can add to that? For example, we are pushing the interval between x-rays for our daughter further and further given her excellent bracing result to date. The next one won't be for a year, we hope. How can you know what will cause cumulative damage--is there a rule of thumb?
    mamandcrm

    G diagnosed 6/08 at almost 7 with 25*
    Providence night brace, increased to 35*
    Rigo-Cheneau brace full-time 12/08-4/10
    14* at 10/09 OOB x-ray
    11* at 4/10 OOB x-ray
    Wearing R-C part-time since 4/10
    latest OOB xray 5/14 13*
    currently going on 13 yrs old

    I no longer participate in this forum though I will update signature from time to time with status

  15. #60
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    Quote Originally Posted by hdugger View Post
    So, is dental plus spine twisty thing related to connective tissue disorders? Or are our kids just lucky
    Can't rightly say. I can say only my one daughter has the issue and not her identical twin. Buy stock in epigenetics.

    Therefore the milkman? (smiley face)
    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."

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