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Still Hoping
12-09-2010, 01:47 PM
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).

Still Hoping
12-09-2010, 02:04 PM
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.

Still Hoping
12-09-2010, 02:40 PM
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...

Pooka1
12-09-2010, 02:56 PM
Sorry for going on in this detail,

Don't feel like you have to apologize for that. All the parents here can relate.

Still Hoping
12-09-2010, 03:43 PM
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).

Still Hoping
12-09-2010, 04:35 PM
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!

Still Hoping
12-09-2010, 04:39 PM
Gotta cook supper, gotta go, been on too long, I will continue later...

JessicaNoVa
12-09-2010, 07:33 PM
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.

Elisa
12-10-2010, 11:00 AM
Do we have an ending to this story?

jrnyc
12-10-2010, 02:47 PM
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

mariaf
12-10-2010, 02:48 PM
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.

Pooka1
12-10-2010, 02:52 PM
if there were great alternatives to bracing and surgery, people, especially parents on this forum, would have written about them by now!!


It certainly would seem so.

I don't think Hope was trying to insult anyone with the "barbaric" comment. I think she is in a extreme circumstance, trying to do her best to keep it together, and seems to be at her wits end.

And anyway, who cares if Hope thinks bracing is "barbaric?" And I say that with no intention of hurting Hope but really, so what if she thinks that?

I would not characterize bracing as barbaric in general. I only have my one daughter's experience with a Charleston to draw upon though. That was not barbaric and in fact she got to a point where she couldn't sleep without the damn thing after a while. I cannot address the situation of a 23 hour/day brace but I must say it looks really really hard and challenging.

mariaf
12-10-2010, 02:55 PM
i just hope it is not costing a whole lot of money to end up in the same place you started...


I think that's what we are all hoping. I do feel for parents who are desparate to avoid surgery for their children.

I think we are all just a bit cautious of those touting unproven methods. I wish Hope and her daughter all the best as well.

Pooka1
12-10-2010, 02:56 PM
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.

mariaf
12-10-2010, 03:02 PM
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 :)

Still Hoping
12-12-2010, 01:49 PM
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.).

Still Hoping
12-12-2010, 01:54 PM
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.



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.

leahdragonfly
12-12-2010, 03:39 PM
Hi there,

Well, I think we are all hanging in waiting for the end of your experience with Clear--so far it sounds like it didn't help at all.

I do hope you'll share the rest.

kidbusiness2
12-12-2010, 04:28 PM
I would really like to hear the end of this story too as I've been considering going to Clear myself. Please let us know.

THanks

JessicaNoVa
12-12-2010, 06:17 PM
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.

Pooka1
12-12-2010, 06:55 PM
Because my daughter is in a brace.

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?

Elisa
12-12-2010, 07:03 PM
Yeah, I was just about to post that no offense should be taken b/c often people who are going through a stressful time tend to blurt out all kinds of things, I know I do. I too am frustrated that in this day in age with medical advances that they don't know 'how to cure scoliosis' but it is what it is. Would still really like to hear the end of this story though but I'm guessing that the OP hasn't got an ending to it yet and when she does she will relay.

JessicaNoVa
12-12-2010, 07:16 PM
If I get a "whoohoo" from a random person, I'd feel good. So when I see a "boo" from a random person I feel bad. She feels it's barbaric to brace your child and I feel offended that she thinks my choice is barbaric. Why can't I feel that way? Irrational? Maybe. I can live with that. I've been called worse.

There's very little support on this forum for bracing as it is and I suppose whenever I come here I'm already in defensive mode.

I apologize to Hope for commenting on her thread.

Elisa
12-12-2010, 07:22 PM
If my son wasn't so severe he'd definitely be braced. I wonder if the reason why it doesn't appear to be supportive of bracing around here (I'm only going by what you say Jessica b/c I haven't been here long enough to see for myself) is b/c the people who tend to frequent here have more severe case of scoliosis? I don't know, I'm just trying to figure things out.

jrnyc
12-12-2010, 07:34 PM
hi Elisa
people do what they feel is best for their kids...
i think "barbaric" is a little extreme, but that is just MY opinion...as opinions go...
i was supposed to wear a nite guard after my dental braces came off years and years ago ...and i thought THAT was barbaric!! ..i hated it, took it off and threw it across the room in my sleep!!
as a result, my straight teeth slipped a little bit...but that was the consequence of my actions...and as a teen, you couldnt convince me the nite guard would help me!

i dont think bracing or surgery is "barbaric,"...i think people do the most minimally invasive of what is out there to help kids...and if/when surgery is the only option left to remedy the progressing curves, then that is what people come to do...

that is my opinion...simply an opinion..
i just hate to see anyone beat themselves up because of comments others make, when we are all pretty much doing the best we can...

jess

Pooka1
12-12-2010, 07:36 PM
If my son wasn't so severe he'd definitely be braced. I wonder if the reason why it doesn't appear to be supportive of bracing around here (I'm only going by what you say Jessica b/c I haven't been here long enough to see for myself) is b/c the people who tend to frequent here have more severe case of scoliosis? I don't know, I'm just trying to figure things out.

Speaking for myself, it's because a BOATLOAD of experts (surgeons) admit there is no good evidence of efficacy. Some think it works but I doubt you will find one who claims there is evidence it works.

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. That translates to a lot of orthopedic surgeons with who knows how many hundreds of years of combined experience who have serious doubts about the efficacy of bracing or else they wouldn't participate thinking the study was unethical.

And there are top names who really believe it works.

It is all over the map.

I am familiar with the literature. There is no good evidence it works. That doesn't mean it can't work. The literature is available to everyone. This is very hard research to do cleanly as is the research for PT.

If they sort out the compliance issues there may be evidence one day that it works but I suspect it won't be clean and will have huge error bars like the recent Katz et al. article where the variability essentially swamps out the minor dose-response curve they found.

I mean there is some reason some surgeons feel it works but they can't just know it. They have to show it when it comes to a very difficult treatment like bracing. Just my opinion.

Elisa
12-12-2010, 07:41 PM
I should also add that when my son was originally diagnosed about year ago (over now I'm sure) by his sister, and yes it was his 2.5 year older sister that noticed his back was "off" so we took him to our doc. His back was very off and the doc rambled through the next step: Wait and see, but I could tell he knew we were beyond that, 23/hr a day bracing, (umm, he's 14 and he's not complying already) or SURGERY! Huh? Needless to say I was overwhelmed with the few choices and still am.

jrnyc
12-12-2010, 07:49 PM
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

Elisa
12-12-2010, 08:09 PM
If I'd have found out earlier when my son's spine was slightly twisted and had been informed about the options and had done research about how fast the spine could deviate from the norm, I'd have braced I think. But like I said, my son was NOT compliant back then (he might be now) so it would have been a worthless cause.

KJD
12-12-2010, 11:26 PM
Honestly, in my OPINION, I am sick of listening to poeple on this site talk about how ineffective bracing is.

There are people on this site and off this site that have had positive results with bracing just as there are many people who live in constant pain years after their spinal fusion, so should we start ranting to stay away from surgery?

If hours per day in brace increases the success rate of bracing, then why would anybody only try night time bracing as a means to prevent a curve from progressing?

What do these wonderful orthopedic surgeons do for a living, oh yeah... SURGERY.

jrnyc
12-12-2010, 11:51 PM
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

Elisa
12-13-2010, 10:37 AM
"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.

Still Hoping
12-13-2010, 11:04 AM
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

Still Hoping
12-13-2010, 11:11 AM
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.

Still Hoping
12-13-2010, 11:21 AM
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.

kidbusiness2
12-13-2010, 01:31 PM
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

mariaf
12-13-2010, 01:32 PM
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.

Still Hoping
12-13-2010, 02:12 PM
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.

Still Hoping
12-13-2010, 02:34 PM
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.

Still Hoping
12-13-2010, 02:59 PM
If others would like to contact me to discuss more please feel free to reply or p/m me.

JessicaNoVa
12-13-2010, 05:10 PM
(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!" :)

Pooka1
12-13-2010, 06:42 PM
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.

jrnyc
12-13-2010, 07:45 PM
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

leahdragonfly
12-14-2010, 09:56 AM
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.

hdugger
12-14-2010, 10:09 AM
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.

hdugger
12-14-2010, 10:16 AM
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.

Pooka1
12-14-2010, 11:04 AM
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.

hdugger
12-14-2010, 12:00 PM
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.

Pooka1
12-14-2010, 02:51 PM
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?

Pooka1
12-14-2010, 05:06 PM
I previously wrote:



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.

hdugger
12-14-2010, 08:10 PM
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 :)

Pooka1
12-14-2010, 08:16 PM
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.

Pooka1
12-14-2010, 08:21 PM
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)

hdugger
12-14-2010, 08:54 PM
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.

Still Hoping
12-15-2010, 08:56 AM
jrnyc wrote:


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

Still Hoping
12-15-2010, 09:02 AM
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!

Still Hoping
12-15-2010, 09:24 AM
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.

skevimc
12-15-2010, 01:27 PM
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/safety/index.cfm?pg=sfty_xray

mamandcrm
12-15-2010, 05:57 PM
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?

Pooka1
12-15-2010, 06:43 PM
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)

skevimc
12-16-2010, 01:32 PM
Thank you for posting that about exposure. We are extremely careful about the radiation both our kids get since our introduction to scoliosis. 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?

I removed the statement I made about the transient nature of the radiation exposure. This, evidently, is not known. Some conventional thinking is that 1 x-ray, for example, gives X amount of risk. So 2 x-rays gives X*2 amount of risk. 3 x-rays gives X*3 amount of risk. (Risk being the development of cancer, i.e. 1 x-ray increases your risk of developing cancer by X amount). So in this case, radiation exposure would be cumulative. However, this is not proven; it is just theoretical.

On the other hand, with low dose exposure, while does effect the cells, it is possible that any damage received will be repaired before the next exposure. However, this is also unproven.

Assessing this risk seems to be extremely difficult, as you can imagine. The debate with this topic seems to focus over repeated CT scans which is about 100 times more radiation than an x-ray (10,000 microSV vs 100 microSv). Calculating 1 x-ray series (standard 2 views) per month from 9-18 years old (108 series) would result in a total exposure of ~11,000 microSv (11 mSV). So it would take that many chest x-rays to equal 1 CT scan. But realistically, that number would probably be half or 1/4 that amount, if not even smaller.

All of that being said, younger patients are more at risk. As are blood making tissues, reproductive and digestive organs. Which pretty much covers a two view scoli x-ray series. Certainly, if you were trying to design a population and x-ray study to maximize risk, the JIS and AIS population fits the bill perfectly.

I'm not sure how many x-rays she is getting per year. IMO, 4-6 would be the most I'd feel comfortable having my daughter receive. Any more than that and I'd want to weigh the risk to benefit ratio pretty heavily. That is, how important are these additional x-rays to the overall success of this treatment?




I've seen some of those numbers but not all (bananas somehow escaped my attention).

The banana thing is a fun fact I recently learned. If we have a study that will expose the individual to radiation we have to include in the consent form, and discuss during the informed consent visit, how much radiation they will be exposed to. Since micro Sieverts or millirems aren't readily identifiable by anyone other than a radiologist we have to bring it into context. So background radiation, e.g. 1 day on planet earth, is usually used. In the future I'm planning on using banana equivalents.

http://en.wikipedia.org/wiki/Banana_equivalent_dose

Still Hoping
12-16-2010, 04:00 PM
[QUOTE=skevimc;113241]J
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


Hi Skevimc.

Those are some interesting numbers to know. Just curious, are you a Dr. ? How do you know this? Do you use this in your work? Just interested.

skevimc
12-16-2010, 05:38 PM
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


Hi Skevimc.

Those are some interesting numbers to know. Just curious, are you a Dr. ? How do you know this? Do you use this in your work? Just interested.

I am not an MD. I did my PhD work on an exercise program for the management of AIS. Below is the post/thread where I introduced myself. (click the little blue arrows next to my name and it'll take you to the post)


First off, Iíll tell you that my name is Kevin McIntire and our group did the work on trunk rotational strength asymmetry and strength training.

I am still in research and currently work with DEXA, CT scans and radio-isotopes in various ways. So to write the consent forms or methods and procedures section of different projects, I had to not only find this information but also calculate the amount of radiation dose since the CT scan I was having performed had not been directly measured and published (thigh CT scan). As well, I had to have a course in radiation safety along with biannual (that's every other year right?) certification.

This in no way qualifies me to assess the long-term risk of repeated x-rays. But it did introduce me to the basic information. Then just a basic google search. I came across this one today which was pretty helpful.

http://www.radiology.ucsf.edu/patient-care/patient-safety/radiation

Bigbluefrog
12-17-2010, 11:28 AM
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 month. And her Lumbar decreased 2 degrees. Our orthopedic does not and will not measure cervical or FHP. Wouldn't want to produce more data or shine a light on anything. That's approaching 2 degrees per month. Hmmmm, I guess there's more than one way to look at this. He was happy with the results.

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.
Thanks for sharing your experiences! This will help others in making treatment decisions.

Did you get any personal references of success with this treatment before hand?
I was curious if they did that. And as a parent, we do want to try anything to help our kids heal! You didn't fail, your a caring mom hoping for the best outcome.

The goal of most is to stop progression! Please do post more. And I hope most will keep this OP request and keep it to the topic at hand...


hoping for good success with our treatment too. :)
X-rays this monday!

Pooka1
12-18-2010, 11:04 AM
Still Hoping,

Can you answer what happened with your daughter on the following:

A. Radiographs:
1. How many radiographs were taken during week 1?
2. How many radiographs were taken during week 2?

B. Did they tell you about the efficacy of Clear in the long term with kids who started in the growth spurt?

C. Scoliscore: Did they recommend Scoliscore?

Thanks.

Still Hoping
12-18-2010, 05:04 PM
Thanks for sharing your experiences! This will help others in making treatment decisions.

Did you get any personal references of success with this treatment before hand?
I was curious if they did that. And as a parent, we do want to try anything to help our kids heal! You didn't fail, your a caring mom hoping for the best outcome.

The goal of most is to stop progression! Please do post more. And I hope most will keep this OP request and keep it to the topic at hand...


hoping for good success with our treatment too. :)
X-rays this monday!


Awww thanks bigbluefrog! We all try to do the best we can. I didn't ask him for personal references of his specific patients before we went there. I know I should have. I had read a great deal online on different websites of other people's experiences at CLEAR. What I read was a mix of both good and bad reviews from people. Some people go in with vastly different expectations of what treatment will do. Money is a big issue, and has different value to different people. So we took a chance. And as we all know, every scoliosis case is unique. There is no magic bullet that works for all cases.

I conducted searches on Dr. Dovorany, but I never saw any comments on him or his clinic, and there were no lawsuits against him. I had read many positive comments on Dr. Sue Bosler, another CLEAR provider in Indiana.

We exchanged email addresses with one family who was there the week we were. We keep in touch and I'm always interested to hear of their results. I wonder if his office would keep a list of email addresses from people who want to exchange experiences? I don't know.

I am going to try to add torso rotation exercises to her routine. Then maybe Schroth, if we can afford it. I hear it's expensive. I'll post her latest results in January. Good luck to all!

Still Hoping
12-18-2010, 05:42 PM
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!" :)


Yes, her neck stretching forward sounds like FHP. My regular chiro that I see for my general back discomfort also measured her FHP, but he is not treating her and he said it was insignificant and secondary to the scoli, which is not what CLEAR says... I don't know what other practitioners measure this and what significance they give it. I am interested in knowing more because I think it would naturally tie into the scoliosis. But other than CLEAR, I haven't found anyone else who is knowledgeable about FHP.

My non-scoliotic son definitely has it. His neck and head crane forward like an old mans (no offense to anyone:)). My hubby and I are thinking of ways to address this, starting with showing him photos of how he looks when he's "craning" and when he has good posture.

I really want my daughter's cervical curve measured, too. What doctors will do that, I wonder, if not her main orthopedic surgeon doctor?

Still Hoping
12-18-2010, 06:03 PM
I am not an MD. I did my PhD work on an exercise program for the management of AIS. Below is the post/thread where I introduced myself. (click the little blue arrows next to my name and it'll take you to the post)


I am still in research and currently work with DEXA, CT scans and radio-isotopes in various ways. So to write the consent forms or methods and procedures section of different projects, I had to not only find this information but also calculate the amount of radiation dose since the CT scan I was having performed had not been directly measured and published (thigh CT scan). As well, I had to have a course in radiation safety along with biannual (that's every other year right?) certification.

http://www.radiology.ucsf.edu/patient-care/patient-safety/radiation

Thanks, Dr. McIntire. I started reading your post under misc - research (haven't finished it all yet). Your research sounds fascinating. What an exciting area to be doing post graduate work in! I hope you return in some fashion to muscle physiology. What area is your postdoctoral fellowship in?

I am currently exploring RST next for my daughter and your input confirms that this is a very promising area. I know you will make great contributions to these forums, for the benefit of so many. Please continue to visit! Thanks

yes, biannual means once every two years! :)

Still Hoping
12-19-2010, 10:26 AM
Still Hoping,

Can you answer what happened with your daughter on the following:

A. Radiographs:
1. How many radiographs were taken during week 1?
2. How many radiographs were taken during week 2?

B. Did they tell you about the efficacy of Clear in the long term with kids who started in the growth spurt?

C. Scoliscore: Did they recommend Scoliscore?

Thanks.

Hi Pooka1. He took 5 the first week and 4 the second wk. He didn't take all of the possible XRays they use. These were of her spine and FHP before and after treatments. Here is a quote from their website, Clear-Institute.org: these XRays give exposure " totalling 292 mR of radiation (by comparison, according to the American Nuclear Society, www.ans.org, the amount of naturally-occurring, environmental radiation we are exposed to every year is 360 mR, and the National Council on Radiation Protection and Measurements states that the risk of abnormality to an unborn fetus is considered negligible at 5,000 mR or less)." I can't vouch for that.

By Scoliscore I assume you mean the saliva test? Yes he mentioned it. This test measures her genetic component which helps to determine how likely it is that her curves will increase. I asked him about it and he said he only uses it for angles <25 degrees and my daughter's were greater than that. Is this test supposed to determine any thing else? Do you have more info on it?

As far as the efficacy long term, I searched through my papers and couldn't find any data on that. There are impressive positive testimonials on their website but of course a testimonial online is just a supposed testimonial. Most of the CLEAR docs have written Ezine articles that are very impressive on the subject of scoli, including Drs. Stitzel, Dovorany, and Woggon. ( members.ezinearticles.com ). I don't think a genuine statistical survey that would give scientifically legitimate results has been done. As I'm sure you know, there are many reasons why this is extremely difficult to do, considering problems with patient homogeneity and long-term compliance, etc etc. I am not aware of any published scientific survey. If and when they get that kind of definitive data, you can be sure we would hear about. It is what it is.

Check out posturecenter.com and CLEAR-Institute.org. I am in no way promoting these sites as valid proof or anything else, (and I'm not affiliated with any of them). I'm just mentioning the websites for anyone who is interested.

Pooka1
12-19-2010, 10:33 AM
Thank you very much for posting those answers.

I think it will be helpful to other parents.

I think he used Scoliscore correctly per what I know. But I still want to know if they recommend treatment no matter what the score. If that is the case then there is no reason to do the test.

Still Hoping
12-19-2010, 10:41 AM
Yes they recommend treatment no matter what. They emphasize don't wait and watch. Start now. They say they get much better results with curves under 25 degrees. So ultimately, the test is optional.

Pooka1
12-19-2010, 10:49 AM
But scores <41 are associated with a 100% chance of not reaching 40*. The surgical trigger is 50*. So I guess I have to wonder if people will put their kids though the treatment if they had a score of <41 and if they realize the child will be sub-surgical just doing nothing.

Now I have been banging on about the damage associated with simply having a sub-surgical curve over the years but I doubt Clear makes that point. I think many folks would NOT pay for Clear if they knew the child would be sub-surgical just to TRY to avoid some potential damage. Clear hasn't proven they can beat the natural history on any front.

Pooka1
12-19-2010, 10:56 AM
And by the way, for curves <25* I think the majority of kids will have a score <41. So they would be faced with sending away most of those patients if the patients were only interested in not reaching surgery range.

leahdragonfly
12-19-2010, 11:24 AM
[QUOTE=Still Hoping;113420]<He took 5 the first week and 4 the second wk. He didn't take all of the possible XRays they use. These were of her spine and FHP before and after treatments. Here is a quote from their website Clear-Institute.org: these XRays give exposure " totalling 292 mR of radiation (by comparison, according to the American Nuclear Society, www.ans.org, the amount of naturally-occurring, environmental radiation we are exposed to every year is 360 mR<snip>

Still Hoping,

I am not trying to scare you, but the Clear people are downplaying the excessive amount of radiation exposure children are receiving in the course of their treatments. There is no "safe" dose of ionizing radiation know to humans. Period. All x-ray exposure comes with some risk (we are guessing it is small, but the point is there are no studies to determine a safe dose of radiation. I wonder why!). Each x-ray taken should provide specific information that can effect treatment--there needs to be a benefit from each and every x-ray that outweighs the risk. And the risks are not insignificant: cancer, leukemia, cataracts, thyroid disease, reproductive problems such as birth defects. Remember, a girl baby is born with every single ovum she will ever have, so all those future grandbabies are in there being x-rayed, too, unless extremely accurate sheilding is employed with every x-ray.

The thing that bothers me so much about the practitioners who downplay the x-ray exposure is they compare it to all the background radiation we receive. But guess what everyone, that means these children are already receiving the background radiation daily, then the excessive x-rays are all piled on top of that. Anyone who thinks it is not important to minimize exposure to unnecessary x-rays is fooling themselves. It can take 20-30 years for these cancers from radiation exposure to manifest themselves, and by then, all those x-rays taken at Clear have been long forgotten.

All parents need to think about this seriously, and take the initiative to protect their children from unnecessary x-rays.

BTW, I work in interventional radiology/cardiology so I am well aware of the effects of excessive radiation. It all boils down to risk vs benefit. With Clear I don't see where the benefit is.

Off my soapbox now.

Pooka1
12-19-2010, 05:01 PM
Gayle made some excellent points.

One the one hand, it is good that most children whose parents take them to Clear are also being seen by a surgeon. But on the other hand, they are getting duplicate radiographs for no reason.

AT MOST, Clear should take one radiograph at the beginning and one at the end. Any short term beneficial results associated with treatment have never been related to long term benefits. Thus it is never justified to take multiple radiographs.

I wonder if Smith has radigraphed her daughter for her posture issue and if so, how many times. I bet the answer is none.

Pooka1
12-19-2010, 09:02 PM
Yes they recommend treatment no matter what. They emphasize don't wait and watch. Start now. They say they get much better results with curves under 25 degrees. So ultimately, the test is optional.

Natural history also gets much better results with curves under 25*.

The key question is does Clear improve upon the already good track record of the natural history for curves under 25*. To show that would require a careful long term study with HUGE numbers of patients coupled with a control group that was equally huge. Clear has never done that so they can't know if they are doing better than natural history FULL STOP.

Either they don't realize this is the actual issue or they deliberately don't tell the bunnies that is the actual issue.

I'm beginning to think they would claim that Clear was the reason any and all curves under 25* did not reach surgical territory when in fact doing NOTHING will result in the same thing at NO COST either in time, money or radiation exposure.

mariaf
12-20-2010, 08:11 AM
[QUOTE=Still Hoping;113420]<He took 5 the first week and 4 the second wk. He didn't take all of the possible XRays they use. These were of her spine and FHP before and after treatments. Here is a quote from their website Clear-Institute.org: these XRays give exposure " totalling 292 mR of radiation (by comparison, according to the American Nuclear Society, www.ans.org, the amount of naturally-occurring, environmental radiation we are exposed to every year is 360 mR<snip>

Still Hoping,

I am not trying to scare you, but the Clear people are downplaying the excessive amount of radiation exposure children are receiving in the course of their treatments. There is no "safe" dose of ionizing radiation know to humans. Period. All x-ray exposure comes with some risk (we are guessing it is small, but the point is there are no studies to determine a safe dose of radiation. I wonder why!). Each x-ray taken should provide specific information that can effect treatment--there needs to be a benefit from each and every x-ray that outweighs the risk. And the risks are not insignificant: cancer, leukemia, cataracts, thyroid disease, reproductive problems such as birth defects. Remember, a girl baby is born with every single ovum she will ever have, so all those future grandbabies are in there being x-rayed, too, unless extremely accurate sheilding is employed with every x-ray.

The thing that bothers me so much about the practitioners who downplay the x-ray exposure is they compare it to all the background radiation we receive. But guess what everyone, that means these children are already receiving the background radiation daily, then the excessive x-rays are all piled on top of that. Anyone who thinks it is not important to minimize exposure to unnecessary x-rays is fooling themselves. It can take 20-30 years for these cancers from radiation exposure to manifest themselves, and by then, all those x-rays taken at Clear have been long forgotten.

All parents need to think about this seriously, and take the initiative to protect their children from unnecessary x-rays.

BTW, I work in interventional radiology/cardiology so I am well aware of the effects of excessive radiation. It all boils down to risk vs benefit. With Clear I don't see where the benefit is.

Off my soapbox now.

I was about to say that I don't buy what CLEAR has on their website, minimizing the risk of radiation exposure to children.

But you said it much better, Gayle :-)

mariaf
12-20-2010, 08:17 AM
Natural history also gets much better results with curves under 25*.

The key question is does Clear improve upon the already good track record of the natural history for curves under 25*. To show that would require a careful long term study with HUGE numbers of patients coupled with a control group that was equally huge. Clear has never done that so they can't know if they are doing better than natural history FULL STOP.

Either they don't realize this is the actual issue or they deliberately don't tell the bunnies that is the actual issue.

I'm beginning to think they would claim that Clear was the reason any and all curves under 25* did not reach surgical territory when in fact doing NOTHING will result in the same thing at NO COST either in time, money or radiation exposure.

B-I-N-G-O

I have always been skeptical of any treatment that claims it can prevent very small curves from increasing.

Most curves of 15 or 20 degrees won't progress anyway.

jrnyc
12-20-2010, 08:31 AM
i don't think there is any way of knowing...
my curves were tiny when i was a kid...not even diagnosed..but there...

they increased as i aged...diagnosed at age 31...

jess

mariaf
12-20-2010, 08:43 AM
Hi Jess,

It's true, there is no way of knowing or predicting what every curve will do. I do believe, however, that many small curves (perhaps the majority) never progress to the point of requiring surgery.

When David was first diagnosed, I can't tell you how many people weighed in to tell me that they (or a relative) had been told as a child or a teen that they had a 10 or 15 degree curve which never increased or required treatement. So, this is totally anecdotal of course :-)

Either way, the bottom line is this - does CLEAR alter the natural history of one's curve. In my opinion, there is no proof that it does - and the cost (and more importantly, the radiation exposure) concerns me.

skevimc
12-20-2010, 11:40 AM
Thanks, Dr. McIntire. I started reading your post under misc - research (haven't finished it all yet). Your research sounds fascinating. What an exciting area to be doing post graduate work in! I hope you return in some fashion to muscle physiology. What area is your postdoctoral fellowship in?

I am currently exploring RST next for my daughter and your input confirms that this is a very promising area. I know you will make great contributions to these forums, for the benefit of so many. Please continue to visit! Thanks

yes, biannual means once every two years! :)


I did the RST as my graduate work and I'm currently doing my postdoc work in muscle physiology. Specifically we're looking at the molecular pathways involved in muscle wasting and muscle building in various wasting conditions/disease states, e.g. renal failure or bed rest. As well, we look at the role that various interventions, e.g. nutrition, exercise and some hormones, play in overcoming muscle wasting.

To me, the RST work does show promise and from a physiological point of view it makes sense. But I also feel the technique is quite rough around the edges. Regardless, I think strengthening the musculature of the spine has been severely over-looked in the AIS world. Whether or not strengthening alone can alter the natural history is yet to be determined. But I think putting a kid in a brace or having them "wait and see" without at least addressing the core muscles and stabilizers makes absolutely no sense.

kidbusiness2
12-20-2010, 02:18 PM
Thank you for finishing your story. I'm just now stopping back in. I am 31 and I wore a Charleston Brace from the time I was 11-13 or so. My curve did progress during that time, but they thought it slowed the progression. My curve has also changed since then. My curve is now a 38 in the middle and 13 at my neck. I have alot of things that have come up due to my scoliosis and living "crocked" my entire life. I have pain EVERYDAY of my life. SO i am constantly looking for a way to take away that pain. I don't think CLEAR would work for me...after reading all this. I know every advirtisement tries to sugar coat things. I'm glad you shared your story. ALSO, I have had NUMEROUS xrays and radiation exposure, which was a great concern, because my mom is a breast cancer survivor. It still concerns me..but in order to get help and find answers you almost have to be exposed to it.

Again, Thanks for sharing!
Julie

jrnyc
12-20-2010, 11:49 PM
hi Maria
oh, i don't believe in Clear...i don't like it, and i have some opinions of it that might not be printable...

that said, i do know in my own case that my curves started out extremely small and progressed by age 31, and then again as i got older...

i just meant that i can understand parents wanting to check out all kinds of scoli tx for their kids, because those parents don't know if their children will be the ones, minority though they may be, who will have curves that do progress!

i just think that when they look for tx, they shouldn't look at Clear!

hope the family is well...

jess

mariaf
12-21-2010, 09:09 AM
Hey Jess,

Oh, I knew what you were saying. I know you do not endorse CLEAR - you are too smart of a cookie for that :-)

And I'm sure you are far from the only person whose curve had a mind of its own. That's what is so frustrating about scoliosis - it doesn't matter what happens 'most of the time' - the path that any given curve is going to take, unfortunatley, cannot be predicted.

Happy Holidays and all the best in 2011!!

jrnyc
12-21-2010, 02:16 PM
that is so true, Maria...who knows for sure which kids will progress, which won't...if only there was some kind of sure thing formula to use!

i do realize now that my sisters are bigger, taller and stronger than me...i am the "runt"...thin, small boned (very), just plain weaker physically than they have ever/always been, even though i've been trying to compensate by being "tougher" mentally (ha!) since i can remember! they both have a curve in their spines too small to really measure...maybe 3 degrees....so to me, the potential was there, but it never happened...ahhh, the luck of the draw....

happy holidays to you and the family, too...

jess...and Sparky

http://i1085.photobucket.com/albums/j439/jrrnyc/2009049_s.jpg?t=1292298612

mariaf
12-21-2010, 03:08 PM
Yes, we can't forget Sparky!! The other day marked the one-year anniversary of when we adopted our puppy :-)

Funny, Jess, both my boys are thin (the way their father was built when he was younger), but my older son is taller and David is more on the petite side, a little small for his age. My daughter is average or maybe even a bit bigger than average in terms of height and build.

So, I guess I could say David is the 'runt' of the litter in our house too - hmmm, I wonder if there is anything to that......

Again, the happiest of holidays to you (and Sparky!)

Still Hoping
01-12-2011, 09:11 AM
I am 31 and I wore a Charleston Brace from the time I was 11-13 or so. My curve did progress during that time, but they thought it slowed the progression. My curve has also changed since then. My curve is now a 38 in the middle and 13 at my neck. I have alot of things that have come up due to my scoliosis and living "crocked" my entire life. I have pain EVERYDAY of my life.

Again, Thanks for sharing!
Julie


Hi Kidbusiness2. I am constantly worried about if my daughter will have constant pain in the future. It rips me apart just to think about it. I'm sorry to hear that your curves progressed. What do you do to handle the pain? Did you wear your brace "faithfully"? For how many hours per day?

Every case is so unique, it's hard to evaluate the efficacy of any treatment. Grrrr...

Still Hoping
01-12-2011, 09:12 AM
I hope everyone had a Merry Christmas, Happy Holidays and Happy New Year!

Still Hoping
01-12-2011, 09:17 AM
Well, I take her in for XRays in a week or so. I will post the results here. Wish us luck!

Still Hoping
01-12-2011, 09:23 AM
[QUOTE=jrnyc;113522]
[COLOR="mediumturquoise"]{oh, i don't believe in Clear...i don't like it, and i have some opinions of it that might not be printable...}

I would be interested in your opinions and how you got them ( the mostly printable ones anyway!!!) Did you have bad experiences with Clear? Why do you feel that way? Thanks

(Oops. I did that wrong...)

jrnyc
01-12-2011, 02:53 PM
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

Pooka1
01-12-2011, 03:08 PM
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.

jrnyc
01-12-2011, 03:19 PM
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

Pooka1
01-12-2011, 03:31 PM
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.

kidbusiness2
01-12-2011, 04:45 PM
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.

Still Hoping
01-19-2011, 02:55 PM
:)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!:)

Still Hoping
01-19-2011, 03:08 PM
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.

Pooka1
01-19-2011, 03:17 PM
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?

Still Hoping
01-19-2011, 03:59 PM
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?

Pooka1
01-19-2011, 06:54 PM
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.

Still Hoping
01-27-2011, 01:11 PM
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??!! :mad:

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

Still Hoping
01-27-2011, 01:19 PM
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?:(

Snoopy
02-01-2011, 05:34 AM
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

mariaf
02-01-2011, 08:32 AM
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.............

mariaf
02-01-2011, 08:35 AM
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.

Snoopy
02-01-2011, 01:43 PM
UNBELIEVABLE, MARY LOU!!!

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

Yep, mine too.

Snoopy
02-01-2011, 01:44 PM
[QUOTE=mariaf;116244]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?QUOTE]

Good point. Should I ask him?

Mary Lou

mariaf
02-01-2011, 03:34 PM
[QUOTE=mariaf;116244]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?QUOTE]

Good point. Should I ask him?

Mary Lou

I'm sure he'd have some illogical reason why the Shriners docs don't refer patients to CLEAR, when the real reason (according to the docs I have spoken to) is that they do not believe it works.

Kudos to you for keeping this guy and his colleagues away from the members of your support group!

mariaf
02-04-2011, 08:05 AM
Mary Lou,

I sent you a Private Message.

DawnT
03-29-2011, 04:24 PM
My 13yo daughter has started her third week of CLEAR treatment. Her lumbar curve reduced from 36 to 26 after the first two weeks. Her FHP was addressed. They have made some major advances in the last year as far as maintaining the progress made during treatment. Her 10* reduction has held for 3 months while she is still growing. I can visibily see the difference. I have had nothing but a positive experience with CLEAR. Again, they have made advances. I don't wish to have debates with anyone though. I will post my daughter's progress, good or bad. As far as taking xrays immediately post tx, there is usually no other choice since most people have traveled great distances and cannot come back just for an xray. However, the moment of truth for us was the xray 90 days after the last week of treatment, and the reduction held. I have also heard many other success stories from parents I met in the waiting room and have kept in touch with since this last December. It is the treatment that made the most sense to me as a parent.

DawnT
03-29-2011, 05:05 PM
I will definitely post more info as I have it. Time will tell a lot. So far I can answer the question about the treatments at home. She does 3-15 minute treatments a day. She wears 3 different sets of weights, while on a bosu ball which sits on a vibe plate. She is a very responsible girl, so compliance is not an issue. She has always had a sensory perception issue, as does my son. Her nickname is "Grace". Stumbles over her own feet, trips, loses her balance, falls off of chairs, etc. It has greatly improved with the NMR in addition to the curve reduction. I will keep you updated.

scolio1964
03-30-2011, 08:11 PM
My 13yo daughter has started her third week of CLEAR treatment. Her lumbar curve reduced from 36 to 26 after the first two weeks. Her FHP was addressed. They have made some major advances in the last year as far as maintaining the progress made during treatment. Her 10* reduction has held for 3 months while she is still growing. I can visibily see the difference. I have had nothing but a positive experience with CLEAR. Again, they have made advances. I don't wish to have debates with anyone though. I will post my daughter's progress, good or bad. As far as taking xrays immediately post tx, there is usually no other choice since most people have traveled great distances and cannot come back just for an xray. However, the moment of truth for us was the xray 90 days after the last week of treatment, and the reduction held. I have also heard many other success stories from parents I met in the waiting room and have kept in touch with since this last December. It is the treatment that made the most sense to me as a parent.

Hi Dawn,
Does your daughter wear a brace? My daughter is wearing the LA brace and will begin the Schroth exercises, but I've heard about the CLEAR and am curious about that as well.

Thank you

Still Hoping
04-12-2011, 03:25 PM
My 13yo daughter has started her third week of CLEAR treatment. Her lumbar curve reduced from 36 to 26 after the first two weeks. Her FHP was addressed. They have made some major advances in the last year as far as maintaining the progress made during treatment. Her 10* reduction has held for 3 months while she is still growing. I can visibily see the difference. I have had nothing but a positive experience with CLEAR. Again, they have made advances. I don't wish to have debates with anyone though. I will post my daughter's progress, good or bad. As far as taking xrays immediately post tx, there is usually no other choice since most people have traveled great distances and cannot come back just for an xray. However, the moment of truth for us was the xray 90 days after the last week of treatment, and the reduction held. I have also heard many other success stories from parents I met in the waiting room and have kept in touch with since this last December. It is the treatment that made the most sense to me as a parent.


Hi Dawn! I'm glad you posted! It is good to hear from other CLEAR patients and parents. It sounds like you are having a wonderful experience with CLEAR! I am so happy for you and your daughter! May I ask which CLEAR you went to? We went to the one in Green Bay, WI, with Dr. Dovorany. What do you think of the dr?

I agree, the moment of truth will come 90 days after the last treatment. As you know if you have read the full post, we had her XRayed a good deal and there is some controversy about that. But we really wanted to have some good, accurate data.

She did not decrease by even 10*, I was hoping for a better improvement. On the other hand, in 6 months she had not increased any AT ALL, while still growing. So really, that is good news. I don't have an update yet since January, but I will post back when I get more info.

You/she did 3 weeks of CLEAR? Wow, that's intense! May I ask how much that cost? Did you buy the chair, and if so, how often does she do it? Do you think you may go back for additional treatment?

I am really happy for you both and hope the results you got will stay or improve. It sounds like we have very similar situations/cases. I wish you the very best. I'll be hoping for you both!

Still Hoping
04-12-2011, 03:32 PM
My 13yo daughter has started her third week of CLEAR treatment. Her lumbar curve reduced from 36 to 26 after the first two weeks. Her FHP was addressed. They have made some major advances in the last year as far as maintaining the progress made during treatment. Her 10* reduction has held for 3 months while she is still growing. I can visibily see the difference. I have had nothing but a positive experience with CLEAR. Again, they have made advances. I don't wish to have debates with anyone though. I will post my daughter's progress, good or bad. As far as taking xrays immediately post tx, there is usually no other choice since most people have traveled great distances and cannot come back just for an xray. However, the moment of truth for us was the xray 90 days after the last week of treatment, and the reduction held. I have also heard many other success stories from parents I met in the waiting room and have kept in touch with since this last December. It is the treatment that made the most sense to me as a parent.


Hi Dawn! I'm glad you posted! It is good to hear from other CLEAR patients and parents. It sounds like you are having a wonderful experience with CLEAR! I am so happy for you and your daughter! May I ask which CLEAR you went to? We went to the one in Green Bay, WI, with Dr. Dovorany. What do you think of your dr?

I agree, the moment of truth will come 90 days after the last treatment. As you know if you have read the full post, we had her XRayed a good deal and there is some controversy about that. But we really wanted to have some good, accurate data.

She did not decrease by even 10* as your daughter did and I was hoping for a better improvement. On the other hand, in 6 months she had not increased any AT ALL, while still growing. So really, that is good news. I don't have an update yet since January, but I will post back when I get more info.

You/she did 3 weeks of CLEAR? Wow, that's intense! May I ask how much that cost? Did you buy the chair, and if so, how often does she do it? Do you think you may go back for additional treatment?

I am really happy for you both and hope the results you got will stay or improve. It sounds like we have very similar situations/cases. I wish you the very best. I'll be hoping for you both!

Still Hoping
04-12-2011, 03:40 PM
Thanks for the post, Dawn. If you can, it would be really helpful if you could continue to periodically post how your daughter is doing.

The questions that most often get asked are:

* Will the reduction last? In particular, will the reduction hold all the way to maturity.
* Does your orthopedic surgeon measure the same gains as those measured at the CLEAR office?
* How long do the exercises take each day and (over time) can you daughter keep up with them

You aren't going to know those answers yet, but it would be really great if you could post again and let us know how things are going.

hdugger:

Our orthopedic surgeon did measure the exact same angles as CLEAR, immediately both before and after treatment, so that was reassuring.

Still Hoping
04-12-2011, 04:00 PM
It looks like they posted my comments above twice...