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Thread: My Experience At CLEAR INSTITUTE!

  1. #31
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    May 2009
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    hey Jessica
    from one to another...my real name is "jessica" but most call me "jess"...

    i just wanted to say that feelings are not facts, they are just feelings, and everyone is entitled to them...so if your feelings were offended by someone's comment, i think you have a right to say so, and not owe anyone an apology for the way you FEEL!

    as i wrote before, i think we are all trying to do the best we can with the difficult situations scoliosis creates...the expression "if it doesn't apply, let it fly" might be apt here...or "take what you like and leave the rest"....good 12 step sayings...because at the end of the day, we all make the best decisions we can...regardless of what others think, or say, or write about our choices...

    and to KJD...if you were referring to what i wrote about 8 hours at nite, i was referring to back when i had to wear a nite guard for my TEETH...had nothing to do with my spine...i was comparing my lack of compliance with wearing a nite guard to another teen's lack of compliance with bracing...

    i think sometimes some folks on forum, if upset, in pain, or seeing a child in pain, get a little...intense...with their opinions on things...

    again, one can "take what you like and leave the rest"...i don't think anyone here is trying to force their opinions on bracing or surgery on anyone else....

    jess
    Last edited by jrnyc; 12-13-2010 at 12:54 AM.

  2. #32
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    "take what you like and leave the rest"
    Exactly Jess! Seems simple enough to me and that's pretty much what I try to do. I've been on Hockey (yep it's BIG up here with lots of testosterone flowing, lol) forums and chinchilla (the care suggestions are downright crazy) forums for many years and you really have to wade through a lot of different opinions and personalities and you take what you want/need and leave the rest.

  3. #33
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    Aug 2010
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    Quote Originally Posted by Pooka1 View Post
    There is not a single rational reason you should care about what Hope feels about this issue. Not one. And this doesn't reflect on Hope either.

    Who cares what random people think?
    Thanks Pooka1
    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. #34
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    Quote Originally Posted by jrnyc View Post
    i dont know ANY kid who, especially at age 14, is going to be pleased with a 23 hour a day brace! i think i ws 14 when i threw the nite guard across my bedroom...and i was only supposed to wear that on my teeth for 8 hours a nite!

    jess
    To jrnyc,

    Yes, jrnyc, compliance is a whole other issue, because I know my daughter would rebel and not wear it as much as she should. Then it would definitely not be effective. I know I myself wouldn't have worn one when I was 14.
    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..."

  5. #35
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    Aug 2010
    Location
    Illinois
    Posts
    65

    Clear

    Anyway, the core subject of this post is the CLEAR Institute.. I don't want to divert the subject into a discussion/flame war about the pros and cons of bracing or the pros and cons of surgery. Not what I wanted to talk about. There are lots of other threads on this forum that discuss that issue. I did not mean to offend anyone.
    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. #36
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    Apr 2009
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    Aspers PA
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    Unhappy still waiting

    Okay, so i don't come on here much, but I wanted or was hoping that it would be a great tool to learn and see what others are or have experienced. So far this thread is OFF topic to me and I still haven't heard the end result of CLEAR institutes therapy. I would really like to know how this turned out.

    I think each and every person has their right to their feelings and what works for one may not work for another.

    Thanks

  7. #37
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    ny
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    Quote Originally Posted by Still Hoping View Post
    I meant I thought bracing was barbaric, not surgery. Bracing is a horrible thing for some parents to think about. Sorry if you don't feel that way.
    You are certainly entitled to your opinion.

    You will see from my signature that my son was braced for nearly 4 years and I certainly was not thrilled to see him in it. I just wouldn't call it barbaric (IMHO that's a bit extreme, relatively speaking anyway).

    But more importantly, I would never say it was barbaric out of sensitivity to folks whose children might currently be braced. Having been there, I understand what it's like.

    Of course, that's just me.
    Last edited by mariaf; 12-13-2010 at 08:46 PM.
    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/

  8. #38
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    Aug 2010
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    Illinois
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    continuuing

    I wrote more yesterday, but now I don't see the post, don't now what happened to it, I prob. did something wrong. Any way, to continue

    so we took her back for a 2nd full wk of treatment in Green Bay. It was a miracle that she agreed to do it again. She went in at 32 or 33T, 18L, 24 Cervical, Forward Head Posture 0.8 inches. Dr. Dovorany added a head weight to "correct her forward head posture." We bought the "Chair" so she could continue to use it at home. (Which, by the way comes from a separate manufacturer. At CLEAR they told us there was a huge waiting list for it and we might have to wait a long time for it. They can't manufacture enough to keep up with demand, they said. We contacted the mfr. and there was virtually no wait, so we got it in plenty of time. That was good. If anyone would like more info on the chair, please let me know.

    My husband assembled it easily enough but he is also extremely mechanically inclined. It was a little confusing because there are very little instructions or diagrams that come with it for assembling it. That is something they should definitely improve on. They also say they will buy it back (reduced of course) to meet the high demand.
    Last edited by Still Hoping; 12-13-2010 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..."

  9. #39
    Join Date
    Aug 2010
    Location
    Illinois
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    65
    At the end of the 2nd full wk. of treatment, her measurements were 27T 18L 16C and FHP 0.3 inches. We have the XRays. Great, right? Now this was with her right out of the chair and into the XRay room. So we expected realistically that they would get worse in a day and a week. That is one thing for parents who are looking at CLEAR to keep in mind. The nice improvements in measurements they list in their brochures and websites are taken right after forces are applied to straighten the spine. Not that this is necessarily wrong. It is just a bit of information to keep in mind when looking at their results.

    OK, so there were some improvements in her angles since he modified her routine. Will they stay? She has been doing the chair and disk twice a day most days (occasionally one a day) so pretty good compliance. We had her measured again by her orthopedic surgeon in October, 2 1/2 mos. after treatment, and the numbers were 33T 16L. Aaaahhhhhh no I was so disappointed! It didn't work! But wait. My husband pointed out that her angles hadn't increased any in 2 1/2 months. Before going to CLEAR, she had increased 5 degrees in 3 months, 6 degrees in 3 1/2 months. That's approaching 2 degrees per month! And after CLEAR her Lumbar decreased 2 degrees. Hmmmm, I guess there's more than one way to look at this... Hubby was happy with the results. (Our orthopedic does not and will not measure cervical or FHP. I don't understand why not).

    I was hoping and expecting her numbers would get lower. But, if they hold, even for a few months or longer, that's that fewer months of major growth left for them to increase.

    So does this mean that CLEAR works? I think it is too early yet to make that claim. But it is interesting. We will have her measured again in January, 5 months after leaving the clinic. Hopefully we will get data that will show whether it is working or not.
    Last edited by Still Hoping; 01-19-2011 at 12:16 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..."

  10. #40
    Join Date
    Aug 2010
    Location
    Illinois
    Posts
    65
    If others would like to contact me to discuss more please feel free to reply or p/m me.
    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. #41
    Join Date
    May 2010
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    49
    Quote Originally Posted by Still Hoping View Post
    (Her orthopedic does not and will not measure cervical or FHP. Wouldn't want to produce more data or shine a light on anything, I guess.).
    That's interesting. Did he say why not? My daughter also has a cervical curve (20*) and it's not being treated by her brace but it is measured at each appointment. I notice that she walks with her neck stretched out and her face looking at her toes a lot. Is that "forward head position"? I'm always calling out to her, "head up!"
    Last edited by JessicaNoVa; 12-13-2010 at 06:20 PM.
    Mom to 11 year old DD who was:
    diagnosed 5/09: 8*L, 8*T
    braced 7/10: 17* L, 25*T, 20*C
    x-ray 11/10: 7*L, 17*T, 20*C (x-ray immediately OOB)
    most recent x-ray 06/11: 17*L, 24*T, 22* C (x-ray 24 hours OOB)

  12. #42
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    NC
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    Quote Originally Posted by Still Hoping View Post
    Our orthopedic does not and will not measure cervical or FHP. Wouldn't want to produce more data or shine a light on anything.
    Just because something can be measured doesn't imply it necessarily means anything or can be interpreted productively. Simply spitting out more numbers just to spit out more numbers is not likely to shine any more light on anything.

    I recently had to tell a graduate student in response to his wanting to add some component to our field work and analytical plan that it would be a number and we can measure it but it wouldn't help us address our objectives AT ALL. It is hard to tell a graduate student that without discouraging him and his efforts at independent thought but it had to be done. And in this case he kept trying to defend it every which way but never made a valid point. It might be valid in an entirely different study but not ours. He is learning.

    If your surgeon would not measure the cervical curve then it is compensatory. I have never been given a measurement on my daughters' compensatory lumbar curves in the entire time I have been dealing with this. Never. The only measurement that matters is the structural curve.

    The FHP has no known relevance to anything that matters to my knowledge. I think it is a chiro entity perhaps in the same category as subluxation. If there is any evidence that correcting the FHP at all affects a structural curve I would like to see it.
    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."

  13. #43
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    May 2009
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    3,745
    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

  14. #44
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    Jan 2008
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    Oregon
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    Still Hoping

    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.
    Gayle, age 50
    Oct 2010 fusion T8-sacrum w/ pelvic fixation
    Feb 2012 lumbar revision for broken rods @ L2-3-4
    Sept 2015 major lumbar A/P revision for broken rods @ L5-S1


    mom of Leah, 15 y/o, Diagnosed '08 with 26* T JIS (age 6)
    2010 VBS Dr Luhmann Shriners St Louis
    2017 curves stable/skeletely mature

    also mom of Torrey, 12 y/o son, 16* T, stable

  15. #45
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    Aug 2009
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    Quote Originally Posted by JessicaNoVa View Post
    That's interesting. Did he say why not? My daughter also has a cervical curve (20*) and it's not being treated by her brace but it is measured at each appointment. I notice that she walks with her neck stretched out and her face looking at her toes a lot. Is that "forward head position"? I'm always calling out to her, "head up!"
    I mostly call 'head forward' when the head juts forward but also looks forward. It's a little less like the neck itself curving and a little more like it's just coming out in a straight angle from where the back curves. The "looking at her toes" part sounds like it has something to do with the neck curve, but I don't really know.

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