My Experience At CLEAR INSTITUTE!

[skevimc]

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]

[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]

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, I’ll 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/patien...fety/radiation

[Bigbluefrog]

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]

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]

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]

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]

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/patien...fety/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]

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]

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]

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]

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]

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]

[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]

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.