Clear institute ~ have you tried it? [Archive] - National Scoliosis Foundation Forums

Pooka1

10-24-2009, 01:49 PM

I've read some testimonials saying it was a complete waste of money.

I looked at Clear Institute sites looking for when that technique first started. It seems like it has been around long enough for them to publish evidence of efficacy.

If Hope404 is correct that they are changing their focus then that is an admission that the old techniques wasn't working and that they have no data on any new direction.

Stitzel, a chiro who was being addressed by Simon in my signature quote can be seen on a video of a news show him and Kalla (Fixscoliosis) did in some Asian country, likely Singapore where Kalla lives.

On that tape Stitzel claims scoliosis can be cured by Clear techniques, one of which is a modified power tool that he uses to "vibrate" the backs of people. He makes some patently ridiculous remarks about how certain frequencies of vibration do one thing and other frequencies do another. Yet where is the evidence any frequencies do anything? He is clearly just making this crap up.

My impression from reading about these alternative therapies is that none have ever been shown to produce a permanent curve reduction and that the relative order of wackiness of their claims is approximately as follows:

Rain drop therapy >> TAMARS > Clear > Schroth

with rain drop therapy taking the "wacky" award. They may retire it for all I know but you never know what will come along next.

hope404

10-31-2009, 12:21 AM

No, Pooka1, I don't think it would be accurate to say they are changing their direction....just becoming more precise as to how they deal with particular curves.

Like any "new" medical procedure there is always room for improvement and CLEAR is no different........ as they treat more and more curves they have learned better and more efficient ways to get correction and keep it.

I personally, know many ,who have had excellent pain relief and curve reduction from CLEAR...it certainly is not a therapy to throw under the bus!!!!

Be skeptical....I certainly was...but I think it is better to be patient and see if they can come up with a way to get these young, smaller curves out of those ridiculous 24/7 braces!!! Scroth focuses 3 dimensionally but does not address the neuromuscular aspect...CLEAR is onto something ...lets just be patient and see....

Pooka1

10-31-2009, 07:45 AM

No, Pooka1, I don't think it would be accurate to say they are changing their direction....just becoming more precise as to how they deal with particular curves.

What about their old way was inadequate enough to mak them try a new way?

What were their success rates before so that they can compare them to after the change?

Like any "new" medical procedure there is always room for improvement and CLEAR is no different........ as they treat more and more curves they have learned better and more efficient ways to get correction and keep it.

New? How many years has Clear been around? I searched around but couldn't find any date.

I personally, know many ,who have had excellent pain relief and curve reduction from CLEAR...it certainly is not a therapy to throw under the bus!!!!

I definitely believe there are people who have pain reduction and temporary curve regression with PT. The evidence for that is in as far as I know.

What is on the table is permanent curve reduction after stopping the PT or even permanent halting of the curve progression after stopping the PT. Where is a lick of evidence for that? Why did that ped. neurosurgeon on that torso rotation video say PT has never been shown to do these things? I would bet my house he knows about Clear.

Do you know people who have permanently reduced their curve or even permanently stopped their curve progression? If Clear was doing that they would have published it and the world would know it and believe them.

Be skeptical....I certainly was...but I think it is better to be patient and see if they can come up with a way to get these young, smaller curves out of those ridiculous 24/7 braces!!! Scroth focuses 3 dimensionally but does not address the neuromuscular aspect...CLEAR is onto something ...lets just be patient and see....

So they don't NOW claim to be able to do these things and we have to wait?

It's very expensive and I seriously doubt they are telling people it is experimental and that they don't know if it will work.

mariaf

10-31-2009, 08:55 AM

Well said, Sharon.

There is another thread entitled "Rods Break 100% of the Time" that tells of statments that are on the CLEAR website which are completely false and have nothing to back them up.

That alone would make me steer clear (no pun intended) of them.

Pooka1

10-31-2009, 10:47 AM

Well said, Sharon.

There is another thread entitled "Rods Break 100% of the Time" that tells of statements that are on the CLEAR website which are completely false and have nothing to back them up.

That alone would make me steer clear (no pun intended) of them.

Clear are a bunch of chiros running a business and therefore not qualified to treat scoliosis. I don't know why this isn't considered practicing medicine without a license based on the claims. I think the only way they escape the charge is that it is just PT (that doesn't have a lick of evidence of stopping or correcting curves permanently).

Here is a statement on Chirobase, a watchdog site for chiros, written by an honest/informed chiro (yes they do exist!)

http://www.chirobase.org/17QA/lifetime.html

"Should Chiropractors Treat Scoliosis in Children?"

My answer is only board certified pediatric orthopedic surgeons should be treating children with scoliosis.

If you read Fixscoliosis's site,

http://www.fixscoliosis.com/forum/

you will see more nonsense, misinformation, ignorance, blind leading the blind, Emily Litella moments, etc. than you can shake a stick at. That site has two chiros posting most of the material so nobody should be surprised that it is stem to stern ignorance or lies.

Also check this out, again written by that honest/informed chiro...

http://www.chirobase.org/17QA/scoliosis.html

Pooka1

10-31-2009, 12:56 PM

(N.B. Clear = bunch of Chiros)

Science and Chiropractic (http://www.sciencebasedmedicine.org/?p=59)

Bigbluefrog

03-04-2010, 10:53 AM

ok so far many opinions on CLEAR Institute...but no real experiences?

Curious, If you were cured of Scoliosis...found something that worked...would you even be on this NSF...to post an answer...I know I wouldn't.

I have noticed with my dd curve that some days it looks worse than others.

The chiro did help her with getting a better alignment with her hips...and changed her stance.

I do like hearing from all of you...Sharon enjoyed reading the article....never thought of chiro as alternative healing

I wouldn't ditch the chiro...I had great results with headaches and back pain...but honestly...it was the first person I saw when I thought she had scoliosis....and he did say he could help but not cure.
there is no cure for scoliosis..that I know of.

My sil shared a cure with me...talk about quirky...its called IMT Intra manual therapy...body energy work...where they lay their hands on you and release the organs of negative energy...only $200 a session...She insists its a cure...and my mil had some work done with it and had good results. And of course you need to come frequently because you need several treatments to cure it. LOL I tried getting references of successful therapy treating scoliosis....lol one number and they never called back....sorry mom and sis. ROFLOL

Bigbluefrog

03-04-2010, 11:51 AM

If you search the forum for older posts, you will find out about other people's experiences with Clear. No one has ever come forward with a permanent correction that we know of.

Lots of money was spent though. Hope springs eternal.:rolleyes:

I tried searching the older posts but ended up reading a bunch of hoopla from a few regulars...taking over the site and not even discussing the original topic...I don't have all day to sort through

joyfull

03-04-2010, 07:12 PM

Hi. I went to Clear for 2 weeks in the summer of 2007. In the long run, I was definitely not pleased. You can send me a private message and we can speak more on the phone if you like. All the best, Joy

Pooka1

03-05-2010, 06:20 AM

I wouldn't ditch the chiro...I had great results with headaches and back pain...but honestly...it was the first person I saw when I thought she had scoliosis....and he did say he could help but not cure.
there is no cure for scoliosis..that I know of.

Yes I was referred to a chiro for my herniated disc. They can help with certain things. But when you have honest chiros saying kids should ONLY be treated by pediatric orthopedic surgeons and NOT chiros, that's something to consider in my opinion. Chiros have zero training in real issues and treatment for scoliosis and they aren't trained in research. That makes the Clear approach really the blind leading the blind. How long have they been around and where are the journal articles showing efficacy? Meanwhile they are making all kinds of money on any treatment that pops into their head at any particular time.

michael1960

03-19-2010, 07:18 PM

We did the 2 week Clear treatment this January 2010. We have seen 4 orthopedic surgeons and 3 chiropractors the past year. My experience to date is very mixed with the 7 "professionals".

I know some on here do not support chiropractors but there may be a role for them in the scoliosis treatment. I try to keep an open mind. I know some also feel orthopedic surgeons have all the answers. But unfortunately they also do not have all the answers. I have learned as a parent I have to be the advocate to determine what is best for my daughter.

As I have read through many old threads I wanted to add some comments based on our own experience the past year.

Two of the orthopedic surgeons at Children's Hospital (2 difference cities) both recommended the SpineCor brace. There seems to be some misleading comments that only chiropractors are in the business of recommending SpineCor. We are very happy with the SpineCor brace except it is not covered by insurance. The orthopedic surgeons told us that it would probably not be covered. It would be interesting to see how many orthopedic surgeons are not recommending it because a patient has to be willing to pay $3,500-$4,000 for it out of their pocket, like we did. The orthopedic surgeons also recommended the Boston brace that would be covered by insurance. Both commented they had seen some promising results with it. They said it may be due to the better compliance of patients to wear it 20+ hours per day.

One other comment. We have had x-rays taken at 3 different hospitals (never by the orthopedic surgeon, but sent to x-rays by orthopedic surgeons) and at 2 different chiropractor offices. I have found the chiropractors are much better at taking the x-rays with regard to accuracy and protecting my daughter with shields.

Also, it was my orthopedic surgeon in Jun 09 who said my daughter's curve had not changed the past 4 months (Feb 09 23 deg, Jun 09 23 deg) so we should just watch it, and not brace it. Then I went to a chiropractor Oct 09 to discuss Clear, to learn more. She immediately noticed that the x-ray taken at Children's Hospital was incorrect. Because of all the negative comments I had read about Clear and chiropractors I was thinking that she is trying to trick me and show it worse so that I would sign up for years of chiropractic treatment. She said it looked like she was turned. It is obvious now when you look at the x-ray. She measured the curve at 36 degrees! 23 degrees to 36 degrees in 4 months?

We then went back to the orthopedic surgeon to get fitted for the SpineCor, as we panicked! The orthopedic surgeon measured the chiropractor x-ray and said it was accurate and he said it looked like the June one was incorrect, the one he based his recommendation for us to do nothing. Recently I visited two more orthopedic surgeons who specialize in VBS and they both told me to ignore the Jun 09 x-rays and they both use the chiroprator's x-rays as the source of all bracing/surgical decisions. By the way, one VBS surgeon highly recommended my daughter wear the Boston brace but said it is ok for her to also wear the SpineCor part-time (for school). She is in the Boston brace now and the SpineCor brace. However, the other VBS orthopedic surgeon said wearing a brace is a waste of time.

Also, when it comes to proven studies and solutions. There are a lot of negative comments about chiropractors and about the surgeons who invented the SpineCor brace. But, in the medical field, even with VBS, orthopedic surgeons perform surgery only to find out 2-3 years later it did not work as planned, then they change their approach. We are talking with one surgeon who wants to put into my daughter a new invented rod that has never been put in a patient. Should we trust him? I do have a lot of trust in the orthopedic surgeons and we are strongly considering VBS. But these surgeons are experimenting on people too, with the hope that it will work. Sometimes it works. Sometimes it does not work. All these professionals are trying to find a solution. While some are in the business of making money, many of them are in the business of helping our children. Let's not forget, being a surgeon and doing surgeries can be a business too.

Regarding Clear, the first 2 weeks of January we did the 2 week intensive treatment. It was 2 weeks, 8 hours per day. The chiropractor and physical therapists conducting the treatment were excellent working with my daughter (8 yrs old). Very professional. Exceeded my expectations regarding their approach and methods. However, the success of it is still being analyzed. I have x-rays before and after, but having trouble getting accurate measurements. Most recently had another chiropractor review them and an orthopedic surgeon. The chiropractor said it did not work (not even supporting his fellow chiropractor and chiropractic profession) while the orthopedic surgeon said it worked. Figure that one out. Orthopedic surgeon supporting the chiroprator's work, at least with regard to curve improvement. He measured a 6 degree improvement with about 4 of it being held 6 weeks later. I was pleased to hear that from an orthopedic surgeon. But....I have recently learned how to measure the Cobb angle and unfortunately it looks like the orthopedic surgeon made a simple mistake during the measurement and it looks like we may have not held the curve.

Please feel free to ask me about any details regarding the Clear Method. By the way, I have asked another medical doctor to provide me with her independent measurements and conclusion on whether it helped. I need to know to determine whether it is something we want to repeat sometime in the future and whether we want to continue the Clear exercises.

Thanks

Pooka1

03-19-2010, 07:36 PM

I know some also feel orthopedic surgeons have all the answers. But unfortunately they also do not have all the answers.

I don't think anyone thinks orthopedic surgeons have all the answers. They clearly don't . They simply have the most efficacious approaches with the most evidence to date which is far from best.

But a surprisingly common misconception is that just because orthopedic surgeons don't have an answer doesn't mean ANY alternative treatment purveyor does. That doesn't follow logically.

It is very shocking to realize how many folks simply assume there is an effective treatment because there must be. Again, I don't see the logic.

michael1960

03-19-2010, 09:37 PM

Pooka1

Thanks for the simple response. Short and to the point. Very effective. Here are some thoughts.

I don't think people are drawing the same conclusion that you did regarding the misconception that if orthopedic surgeons don't have the answer than any alternative treatment purveyor does.

At no time, have I personally, made that assumption. However, you make the reference like it applies to everyone. In all your threads you make it all sound black and white, but there are many gray areas when it comes to scoliosis treatments and their success.

Do you support VBS? Are there any studies that show VBS is effective? I see studies by Dr. Betz, but he is the one that is doing it and promoting it. And while he has treated a lot of people, it did not work for many of them (over 35 degree curve). And their were complications for others. So, while I hear so much discredit to all the alternative treatments, can you point me to the surgical ones, especially the minimal invasive treatments? And this is a sincere request because I am building a new website with all this information and would very much like to include surgical studies.

I have read many of your threads and posts, and learned a lot from them. However, they can be a bit misleading because you have a very strong bias towards orthopedic surgeons and a strong bias against chiropractors and other forms of treatment. Therefore, I have to always consider that when I read a post.

If you want your spine to be straightened, regardless of whether it is for pain reduction or cosmetic purposes, the orthopedic surgeon methods are probably the quickest and most effective, with the least amount of effort (but probably the highest risk).

I know quite a few people, and you probably know more, that have 50+ curves and do not have any real issues with scoliosis other than the look of it. Several of them I know are college athletes who play quite well with scoliosis and experience very little pain. But when they are done playing sports they will have surgery to correct it. If any non-surgical treatment works, it will take years to get the benefits that they can get in a 10 hour surgery and weeks of recovery.

We need to all be very smart about what we do, evaluate the options, consider the risks, determine the cost/benefit, and then make a decision, and they pray we made the right decision.

You say you don't see the logic in many folks simply assuming there is an effective treatment. Again, you are making an assumption or generalization that is probably not the case for many parents who have taken the time to educate themselves.

So far, none of your generalizations, that you speak of with great confidence and commitment, apply to me and many other parents I know. Unfortunately, someone new to scoliosis may actually believe these generalizations and miss the opportunities to find alternative treatments that work for them. Or they follow the direction of one orthopedic surgeon and end up having rods and fusion.

Also, at no point in any of my comments did I say I simply assume there was a treatment. On the contrary, I see no ideal treatment. But what I do see are many "professional" and parents dedicating their lives to finding treatments for scoliosis.

And while there may be many quacks out there making the claim they can fix scoliosis, they are in all professions, including the medical profession. We have surgeons making recommendations to put in rods and do fusion because that is all they know. They have yet to taken the time to embrace the latest surgical treatments. However, we have other surgeons on the leading edge testing their ideas/theories or their own inventions inside our children. When we ask these surgeons the long term effect of staples in the body, or new rods in the body, they can only hope it will be ok, but many have commented "we are learning right along with the patient". I assume that this practice would be unacceptable outside the medical profession but it seems to be acceptable in the medical profession.

In the end, my own personal opinion or theory is that the right combination of physical therapy (if nothing else to strengthen the muscles in the spine through exercise), bracing (whether it is to temporary hold a curve before surgery), and surgery are the right choices. And if a person wants to try non-surgical methods to reduce the curve or hold the curve to prevent surgery, then more power to them, and we all should be happy for the number of them who are successful and avoid surgery.

By the way, I like your passion and spirit. I just don't agree with your generalizations of people.

I look forward to many more discussions.

You are an interesting person. When I posted the very long message last week regarding my issue in NYC, i waited to see your response. I figured I would take a lashing for my comments. However, I didn't, you actually complimented me. Whew!! I felt lucky. I know some people will not post on this forum for the bashing they will take with an innocent post. And remember, people just want help, not to be criticized. I spend more time on other forums that allow people to be more open and share their experiences and ideas.

But now I see why you liked that post. I was bashing a chiropractor. Not only a chiropractor but a SpineCor chiropractor. A profession and treatment you strongly disagree with for treating scoliosis.

Darn, I thought I had really written a good post that passed the Pooka1 test.

Thanks for all your threads and posts. Embedded in them, when you can get past all the bias feelings, are some great and very helpful suggestions.

Michael

leahdragonfly

03-19-2010, 11:11 PM

Hi Michael,

I just wanted to say that I always read your posts with interest, and you are certainly tireless in your quest for the best treatment for Sydney. I think your long post about your negative experiences in NYC and your letter calling Deutchman onto the carpet were both outstanding, heartfelt and well-written.

I think you may misunderstand some of the zeal against "alternative" treatments. If you read back through several years of posts here (it takes awhile), you will unfortunately find many, many examples of parents who were terrified of bracing and surgery. You will read heartbreaking posts about people who spent countless dollars and invested their hopes in alternative treatments, only to see their children have uncontrolled progression and need surgery anyway. I think a lot of the resistence to alternative treatments is there because kind people wish to help spare other unsuspecting parents and children from their mistakes.

Do let us know when you get your new website up. I am sure many will be curious to see it.

Best regards,

michael1960

03-20-2010, 01:35 AM

Gayle

Thank you. I very much appreciate your response. I very much understand your point and it is why I am building this website (scoliosis101.com). I have a long way to go but it is a start. I want to make it one place where people can go and get all information, one stop shop. I have spent so much time researching and researching. Like Clear Method, it may or may not work for us, and I totally disagree (i am disgusted) with their marketing approach to bash surgery. I consider that very unprofessional. However, I spent 2 weeks with Dr. Sid in NYC and his staff. And I am not an easy person to please, primarily due to my very high expectations of all "professionals". But Dr. Sid and his team exceeded my expectations based on how they worked with Sydney and the methods they used. I was able to see improvement along the way and it was very methodical in designing methods that worked for Syd (8 yrs. old, 50 lbs, 4 ft, 30 deg thoracic curve, etc.). Plus along the way they educated me on everything and involved me in all steps. I am still trying to validate whether the method worked and whether our following 6 weeks of exercises, 1-2 hours per day worked to hold the curve. In the end, I may have to write it off as not cost effective. I do not believe it hurt Syd, and it looks like it may have helped. But was it cost effective? In the end, based on the results, I will determine if we should make the investment again. But, the two Clear chiropractors i met over the past year were both very professional and competent in their work.

However, I have also come across other chiropractors that said they could "cure" Syd of scoliosis. These chiropractors I walk away from. I am getting much better being able to distinguish those who are looking out for Syd vs their own interest. Anymore, when meeting a new "professional" I tell them what I am doing regarding Clear, Schroth, SpineCor brace, Boston brace, and now VBS/Hybrid Rod or VBS/Self-Growing Rod and I look for what they say. When they start bashing another treatment, I walk. I need a "professional" that has an open mind to multi-treatment solutions. The reason I picked Dr. Sid over all other Clear chiropractors because he believes in Clear + SpineCor bracing. It was my own theory to get the curve reduction and hold it with a soft brace. He was the only Clear person I could find with an open mind to combine multiple treatments.

I too want to protect others from taking a wrong path. We need to figure out how to best direct people down the right path. And don't get me wrong, I feel surgery is probably the best solution for Syd with either Dr. Betz's team or Dr. Durrani but it does not prevent me trying other methods. Dr. Betz and Dr. Durrani have both been open to other non-surgical methods. However, in some cases, they are not familiar with them, and for good reason, they are surgeons, and I hope they are spending their time being the best surgeons they can be, not worrying about validating Clear, Schroth, SpineCor, etc. Leave that to others to validate, meanwhile they can do what they do best and that is providing the best and latest surgical methods for our children.

But, for example, if a person is considering chiropractor treatment, then what recommendation can we give them other than bashing all chiropractor practices related to scoliosis. That is not the right approach either. This forum, or my new site, or something should provide them with caution taking that approach and provide them with guidelines, independent of marketing material they may be reading. People new to scoliosis, like me, will read these forums and take what people say wholeheartedly, at least in the beginning until I get to know them.

I appreciate your response. Please take a look at the site. I have a very long ways to go, but for now I am capturing sites, videos, research papers, and manuals in one location. Please don't evaluate what I have collected so far. I am randomly gathering content. When I reach a large volume I will then work on getting others involved to help organize it and find the best material. And it will also allow all users to rank the material so the best documents move to the top of the list. I am still in the process of developing the framework and finalizing what I want the site to do. Please feel free to let me know what you think and what you would like to see in a site. I have added the most videos (youtube) to the surgery fusion/rod section. I started watching videos the other day and could not stop. Some are quite graphic showing the surgery. But it is quite interesting to listen to the stories of young ladies and young men going through surgery.

I have also provided links to other sites and to the forums. I would like to create the portal or gateway to all scoliosis information. I also want to provide a method by which people like you, Pooka1, and others can provide your input on recommended paths for people to take based on your real life experience. My decisions on how to help Syd are based on input from "professionals" and reading documents/research on the internet. But input and advice from you and others on these forums is invaluable in making decisions.

Thanks
Michael

flerc

03-20-2010, 10:06 AM

I have crossed so many emails with a Clear doctor and as I ever do, I requested for some proof that in fact it worked in at least, on just only one case similar to my daughter. He gave me the email address and telephone number of a mother of an adolescent in Panama, who told me about amazing results, but her daughter was in full growth, so it was not the case was I was looking for.
I think that a serious classification must to be done in scoliosis, perhaps not only based in degrees, age, idiopathic or not. It seems to be very much complex than that, and maybe that some solutions as Clear could works in only some of them and could be absolutely useless in other ones.

tonibunny

03-20-2010, 10:19 AM

Pooka1

03-20-2010, 11:21 AM

Do you support VBS? Are there any studies that show VBS is effective?

VBS has many advantages over bracing and is very safe. If my kids had JIS, I would probably be doing that. There are studies but as has been recently pointed out, it seems to work best in smaller curves and lumbar curves, the same two curve classes that don't tend to increase. I have not studied the literature like I would have if it was on the table with my kids but I think a case can be made that it does alter the natural history of scoliosis which, along with VEPTR (and such) and watching/waiting, would make it the only non-fusion technique to do so. The same can't be said of bracing or PT at this time with any confidence.

I see studies by Dr. Betz, but he is the one that is doing it and promoting it.

That is incorrect. As I understand it, there are many surgeons who have trained on the technique and the number is growing. I think Maria maintains a list on her VBS site she runs with two other people. I don't know what the criteria are for when a surgical method moves out of the the "experimental" category" into the standard care category but given how insurance companies are now largely paying for it (as I understand), I would say VBS is dong that.

I have read many of your threads and posts, and learned a lot from them. However, they can be a bit misleading because you have a very strong bias towards orthopedic surgeons and a strong bias against chiropractors and other forms of treatment. Therefore, I have to always consider that when I read a post.

Well then I haven't been clear. I have a strong bias for factual material and evidence and a strong bias against counterfactual material and unsupported claims. That necessarily plays out as a strong bias towards orthopedic surgeons and a strong bias against chiros who should NOT be treating scoliosis in kids due to lack of appropriate training FULL STOP.

Similarly, we are in the unfortunate and embarrassing situation where only about 60% of folks in the US accept the fact of evolution and a few billion year old earth. Thus the other 40% will view my comments about that as being strongly biased towards science and strongly biased against religion when in fact I am just strongly biased towards reality and strongly biased against counterfactual claims.

The point is everyone brings a prism through which they view things. When that prism is not designed to find facts and sort out counterfactual material, there will always be a problem with people who do care about facts. It is inevitable.

People are entitled to their own opinions; They are NOT entitled to their own facts. Can we agree on that?

And while there may be many quacks out there making the claim they can fix scoliosis, they are in all professions, including the medical profession. We have surgeons making recommendations to put in rods and do fusion because that is all they know.

If surgeons make a recommendation for fusion it is because it is the best solution at the present time for a particular patient, NOT because it is all they know. This is another common misconception in my opinion. Surgeons are required to know ALL effective treatments for scoliosis, surgical and conservative (bracing). This is their game and to suggest otherwise is incorrect.

As medical professionals, they are NOT required to know alternative treatments until the treatments pony up some proof of efficacy. If an alternative treatment is effective, it will get a seat at the big table and become part of medicine. That actually has occurred, acupuncture has been shown to be effective in some very limited cases. But we haven't seen any alternative treatment prove effective yet in the field of scoliosis. Blaming surgeons for that reality of alternative treatment failure is just shooting the messenger.

You are an interesting person. When I posted the very long message last week regarding my issue in NYC, i waited to see your response. I figured I would take a lashing for my comments. However, I didn't, you actually complimented me. Whew!! I felt lucky. I know some people will not post on this forum for the bashing they will take with an innocent post. And remember, people just want help, not to be criticized. I spend more time on other forums that allow people to be more open and share their experiences and ideas.

Do you think people should be allowed to post blatantly counterfactual material on a medical forum designed to help people get the facts?

But now I see why you liked that post. I was bashing a chiropractor. Not only a chiropractor but a SpineCor chiropractor. A profession and treatment you strongly disagree with for treating scoliosis.

Yes I disagree with it and there is a good reason for that. It isn't random.

Darn, I thought I had really written a good post that passed the Pooka1 test.

Actually you did write an excellent post which had a good thought process and was well written. If I did have a test it would have passed easily. :)

Thanks for all your threads and posts. Embedded in them, when you can get past all the bias feelings, are some great and very helpful suggestions.

Thanks for yours. I think you are making very good contributions.

joyfull

03-20-2010, 11:54 AM

Sharon, After having lived with scoliosis for 46 of my 57 years, and after trying to avoid surgery for all those years, I find myself agreeing with your approach to all this. There is so much misinformation out there. Dr. Woggon takes on the most severe cases, as I saw in St. Cloud, and says he can help everyone. We all saw him as our last best hope.

As Linda said, there are people out there with very severe curves who are going strong, which makes the decision to have surgery so difficult. Especially if there is no pain.

Dr. Woggons said that his son was working on a research study through Palmer Institute in Texas on the efficacy of his method. This would be really helpful to those looking for effective alternative treatments. I have yet to hear about it.

Scoliosis is really, really hard to cure. It's taken me 57 years to find this out. Most chiropractors know this are are humble enough not to take it on.

This forum has given me the courage to finally have surgery. Thank G-d this is one thing I've been spared with my two sons, who have ramrod straight spines. Good luck to all of you who are dealing with this with your children; you have my empathy and admiration.

All the best, Joy

flerc

03-20-2010, 12:20 PM

Hi Flerc,

Scoliosis surgeons do sometimes classify cases of Adolescent Idiopathic Scoliosis according to the "King" or "Lenke" systems of curve classification. I have no idea if chiropractors are aware of these systems though.

This page (http://www.xn--harms-wirbelsulenchirurgie-shc.de/src/plugin.php?m=harms.SKO03P)describes how these classification systems work.

Hope that's interesting to you!

Thanks tonibunny!. In fact I'm still waiting to contact some other parent in the world with a daughter with only similar age (in fact growth prognosis Risser, menarche age) and similar Cobb angle. Surely there not exits another else in the world matching a classification like that.
It seems a very good approach to an useful classification, telling not only about the severity but about the kind of factors that must to be specially taken in account, leading to the kind of treatment that should be follow in each case.
Some approaches in that sense, seems to be shyly emerging like that (sorry it's in spanish) http://www.ub.edu/revistaipp/bricot_n3.pdf

michael1960

03-20-2010, 01:32 PM

Pooka1

Thanks for your comments. We will continue to agree to disagree, but that is ok.

I have read some of your threads regarding facts. Being a man of science (and God) I too am focused on the facts regarding scoliosis. So help me understand. You are very passionate about the facts. Teach me and others about the facts. Feel free to point me to other threads in which you have presented the facts.

What are the best facts you have or know of regarding the best treatment for scoliosis. I have been pursuing them. Point me to the best factual evidence that exists today regarding scoliosis.

Whatever you send me, regardless of the detail and length, I will read it all. If there is a lot of information, please prioritize it so I know what is most important to read first.

This is a sincere request. Please note that my interest is primarily in JIS. If the available facts for JIS are limited, then AIS, primarily younger AIS.

As I have been very open to listen to every professional and every parent, I am very open to learning the facts.

I will thank you in advance. And again, please point me to threads or anything that makes this easiest for you. I will dedicated a special place on my website to the facts!

Thank You

Michael

mariaf

03-20-2010, 01:52 PM

Well then I haven't been clear. I have a strong bias for factual material and evidence and a strong bias against counterfactual material and unsupported claims. That necessarily plays out as a strong bias towards orthopedic surgeons and a strong bias against chiros who should NOT be treating scoliosis in kids due to lack of appropriate training FULL STOP.

Hi Sharon,

You made some terrific points in your post, but I've chosen the one above that I think is extremely important - chiros should not be treating kids with scoliosis. If one's child has scoliosis, they should be treated by a pediatric orthopedic surgeon. As we know, surgeons not only perform various surgical procedures but often use bracing (full-time and part-time, as may be appropriate), so while I can understand one trying to avoid surgery if they can, I do not agree with seeing someone who has not been trained to treat scoliosis.

As for VBS, you are correct that there is a growing number of highly regarded doctors performing it, even outside of Shriners (guys like Hresko, Skaggs, Oswald, Diab, Durrani, Vitale, etc.) and I am happy to say that I'm hearing more and more insurance companies are covering it. In fact, I met a mom last week who told me Dr. Vitale has had almost every case he submitted for VBS approved.

Since we are about 8+ years into VBS, we are now seeing some patients who have reached skeletal maturity and whose curves have held and have not required fusion. I know of one girl personally and recently learned about another case. Does that mean all of the VBS kids will be so lucky? Of course not. But, unlike methods such as CLEAR or other treatments used by chiropractors, I have not seen any evidence that they can permanently correct a curve. Apparently, most highly regarded and qualified/trained orthos would agree.

I'm not trying to put down anyone seeking a non-surgical alternative. If they worked, we'd all be lining up and nobody in their right mind would put their child on the operating table. If a patient can avoid surgery by, say, bracing for a few years, we'd all be very happy for them I'm sure. However, I, like you, just hate to see parents taken in by some of these charlatans out there who are just trying to make a buck - which is quite a different story.

michael1960

03-20-2010, 02:22 PM

Hi Maria

Great post. I am asking of Pooka1 (or you) for the VBS facts that would make it true vs all the other studies regarding bracing, spinecor, and other methods.

What makes a treatment to be proven by FACT. For example, the studies performed by Rivard/Coillard regarding SpineCor are often considered to not be factual. Part of this is because they are the inventors.

And I have seen Dr. Betz's study, that I think is very good, but is it any more factual than Rivard/Coillard's study?

You know me, I am just looking for what is best for Syd, and on this forum there is so much talk about FACTs. I am trying to understand what it means. What makes one study factual while another study is not factual?

Are all orthopedic studies considered factual?

I am with Pooka1 on all of this, let's get to the facts. I have been looking for them for quite some time. But all I find are studies, often by those who have invented the device or method. Or studies by others who are trying to prove another study wrong.

Also, on my point of Dr. Betz was about him promoting VBS and doing a study. It had nothing to do with Dr. Betz being the only one that is doing it. You know that I know that very well. It was more on the point that as everyone questioned Rivard/Coillard's study because they are the inventors, does Dr. Betz's study fall into the same category?

Please provide advice/direction on what makes one study factual vs another.

Thanks
Michael

leahdragonfly

03-20-2010, 03:45 PM

Hi Michael,

In your quest for scoliosis info, I am wondering if you've come across the Scoliosis Research Society (www.srs.org) and the POSNA (Pediatric Orthopedic Society of North America)? The POSNA has a huge annual meeting and they post instant archives on their website. They have a huge amount of info from many of the top scoliosis names around the country, all of which is free and viewable online. There are several presentations on VBS and fusionless growth modulation there, not just by Dr Betz. I am sure you will enjoy it and find it informative.

And PubMed is a bottomless pit of research articles. Just go there and search for vertebral stapling, or JIS, or JIS bracing, etc. You could easily spend all your waking hours reading the articles there. I know I have spent countless hours reading.

We all have to form our own opinions about treatment choices for our child. You have repeatedly raised the question about Dr Betz being the only author so far of VBS studies, and you have asked how he is different or any more credible than Rivard. I think the most important difference is that Rivard is making money by selling his brace. Dr Betz and all his Shriners colleagues are not making any extra money from VBS that they wouldn't be making otherwise. They get paid a flat salary from what I understand. So they have no incentive to recommend VBS over another treatment other than the fact that in their professional opinion, it is the best treatment for a particular child's unique situation. Do keep that in mind. There is a huge difference.

Good luck, these are certainly fascinating and valid discussion points.

Pooka1

03-20-2010, 03:59 PM

An experienced board certified pediatric orthopedic surgeon is best situated to give you facts, not me.

There are any number of people on this group who know more about scoliosis and any given sub-topic within that than I do.

I did not have to do too much research... my kids had fast-moving curves and there was no choice. In that sense, it was far easier than any JIS case or even other AIS cases to know what to do.

JIS is not in the same category as AIS. Fusion, as a rule, is not advisable. So you have to avail yourself of conservative approaches until most growth is done. Then the question is which approaches have shown the most promise. The literature is only so good... a majority of it is false for various reasons not the least of which you can't hardly do a controlled study. This one aspect alone explains why something like bracing has become the standard of care when there isn't a lick of high quality evidence for it.

And I have to point out another common misconception... you wrote:

For example, the studies performed by Rivard/Coillard regarding SpineCor are often considered to not be factual. Part of this is because they are the inventors.

I doubt any surgeon would dismiss the Spinecor literature in any large measure (you said partly) on the basis of it only coming from the inventors. If this brace is easier to wear and was effective, every surgeon would be prescribing it.

I suggest they dismiss the literature because they have seen misread radiographs like we have seen on the group and have read the reports of other researchers which showed no efficacy for AIS. I also suggest they may have tried the brace themselves and seen no benefit in the AIS crowd.

Simply seeing reports from the inventors would never be sufficient to dismiss a treatment modality to a researcher in my opinion and experience. Jonas Salk invented the polio vaccine and that was a big win. Inventors can and have been right.

A good test of a hypothesis is to ask if it requires the vast majority of surgeons to be ignorant or nefarious. If the answer is yes then the hypothesis is wrong FULL STOP. Withholding Spinecor treatment if it works would be ignorant or nefarious on the part of most surgeons in the US. So that clearly isn't the case.

Note this does not mean all surgeons are honest... some inventors are irrationally exuberant which is just another way to say the literature is GIGO. And they pay a big price in loss of perceived integrity from their peers.

mariaf

03-20-2010, 04:26 PM

You have repeatedly raised the question about Dr Betz being the only author so far of VBS studies, and you have asked how he is different or any more credible than Rivard. I think the most important difference is that Rivard is making money by selling his brace. Dr Betz and all his Shriners colleagues are not making any extra money from VBS that they wouldn't be making otherwise. They get paid a flat salary from what I understand. So they have no incentive to recommend VBS over another treatment other than the fact that in their professional opinion, it is the best treatment for a particular child's unique situation. Do keep that in mind. There is a huge difference.

I was going to say exactly that - but I think you said it better, Gayle :)

mariaf

03-20-2010, 04:33 PM

A good test of a hypothesis is to ask if it requires the vast majority of surgeons to be ignorant or nefarious. If the answer is yes then the hypothesis is wrong FULL STOP. Withholding Spinecor treatment if it works would be ignorant or nefarious on the part of most surgeons in the US. So that clearly isn't the case.

I said something similar in another post, Sharon. That guys like Dr. Betz and Dr. Vitale have spent years (in Dr. Betz's case decades) searching for better treatment methods particularly for JIS. If the Spinecor brace, which many say is more comfortable and easier to wear than rigid braces, was effective in their opinion, I would bet my last dollar that they'd be the first ones in line to prescribe it and get trained in fitting it.

Also, you are correct about the reasons WHY many dismiss the data published by Rivard/Colliard - not only because they, unlike Dr. Betz, are making money from Spinecor but there has been much discussion (and I know several patients this happened to) that their in-brace measurements are NOT reflective of a child's true curve and in many cases, once the true degree of curve is discovered the window has past for treating it either with another brace or VBS.

Dr. Rivard even went so far as to tell one patient that if his brace didn't work, then no other brace would work. He clearly didn't want to lose a patient - or perhaps more accurately a "customer" because his practice and that of the chrios prescribing Spinecor seems to be a run like a business rather than the practice of medicine.

Pooka1

03-20-2010, 04:47 PM

Maria, yes I didn't think about the money aspect. I don't tend to associate the money aspect with surgeons as many/most(?) are paid a flat rate no matter how many surgeries they do as far as I know.

But it is, of course, a live issue with inventors like Rivard. It doesn't have to be that way but it just is with some.

Spinecor is so seemingly superior to patients and parents that they will always have that in their pocket irrespective of results and even if people have to go to chiros to get it. And at the prices I have seen, it must be a huge money-maker. I doubt the company is publicly held but is there any way to know what their annual profits are?

michael1960

03-20-2010, 04:51 PM

Gayle

Thanks. Funny you mention the SRS abstracts. I have been reading them for the past couple hours. Very good reading for a Saturday afternoon.

I think that I have concluded from the forum discussions that the facts I thought that might be available, due to the emphasis of the facts in some posts, they may not exist.

In the end, we have "professionals" performing studies and presenting results. These studies may or may not contain some level of bias in them. We have medical doctors doing studies on medical practices and we have chiropractors doing studies on chiropractic practices. And we have a couple orthopedic surgeons (Rivard/Coillard) doing studies on non-medical practices (flexible brace).

And then when some people reference studies, these studies may not be applicable. The study may have only included AIS patients but the results of the study was assumed to apply to JIS patients.

I can only hope that Dr. Rivard and Dr. Coillard (orthopedic surgeons) invested 10+ years in developing the SpineCor brace for the good of all the children who hate to wear a hard brace and to increase brace compliance, probably one of the top reasons bracing may not be effective.

Dr. Betz recommends bracing to hold or improve the curve prior to surgery, so we know that Dr. Betz supports bracing (while Dr. Durrani does not).

Once again, I value your input and perspective. I think I am done discussing this matter on the forum. It kind of goes round and round. I felt that I might actually get the facts or at least some clarity of what makes one study valid and another study invalid, other than a sense that there may be some bias that favors orthopedic surgeons. I was looking for something more conclusive.

It is tough because embedded within all these studies, unfortunately, are "professionals" making false claims to further their own personal interest.

In the end, if I had to pick only one "professional" to treat my daughter, it would be an orthopedic surgeon, specializing in the latest minimal invasive methods to treat scoliosis.

If my insurance covers Dr. Durrani, I now have to decide on going with a "self-growing" rod that has never been placed in a patient but requires only 2 surgeries (1 to put it in, 1 to take it out) or go to Shriners Hospital for the hybrid rod that requires 16+ surgeries.

Can I trust Dr. Durrani? While he makes no money on the self-growing rod he puts in Syd, he makes money on all others who use it. So..., is he doing it only to promote his self growing rod and make money or is he recommending it in the best interest of Syd. I have to assume, he is doing it for Syd. Just like I think Dr. Rivard and Dr. Coillard are doing it for Syd.

So, not only the question of facts come into play, but the question whether the "professional" treating our children have a bias towards one solution vs another. I know you and others will disagree but let's not rule out that Dr. Betz may be a bit bias towards VBS, something in which he has invested many many years, including his reputation and the reputation of Shriners Hospital.

So, in summary, despite my comments on Dr. Betz, Dr. Durrani, Dr. Rivard, and Dr. Coillard, I truly believe that each of them are doing it for one reason and one reason only, and that is to improve the lives of our children. And that is how I approach each of them. We have to remove any negative bias to their intentions and assume they are doing it for the right reasons. Then, we get back to the topic of what treatment is best. Gee, that is were we started. Sorry for the rambling. Just taking a break from reading research abstracts.

Thanks for the references and links.

Michael

michael1960

03-20-2010, 05:10 PM

Actually, the price of SpineCor is interesting. Many who have been in SpineCor for several years say it is very cost effective. While a Boston brace may need to be replaced every year or 1.5 years, some children have been in the same SpineCor brace for 3-4 years with minimal investment.

And one thing interesting about Rivard and Coillard that I have learned is that they do not promote replacing the brace and parts of it unless it is absolutely necessary. On the contrary, others, like my recent experience in NYC, the straps were replaced after 4 months.

I agree, it would be interesting to see how much money the inventors make vs the other "professionals" including chiropractors, orthotists, and surgeons who recommend it and fit it.

Again, I think, often, inventors are in it for all the right reasons (Rivard, Coillard, Betz, Durrani), to invent something that will make it better for the patients. Who can argue with these inventions:

1. a flexible brace (vs hard brace)
2. an internal brace using staples (and a potential long term solution)
3. a self-growing rod (vs one that requires surgery every 6 months)

For all of us, and our children, each of these inventions significantly helps our children get better and cope with scoliosis (with the assumption that they all work).

While I am typing, my 8 yr. old is asking permission to wear her SpineCor brace tomorrow to a 2 hr birthday party, instead of the Boston brace. This is very important to her. She could have asked for no brace, but instead asked to wear the flexible brace. Very cool! And while she is home all weekend, she wears the Boston brace full-time (I even gave it an extra tug today!)

I think it is not the inventors we need to worry about. It is all the other people who are trying to make a "buck" off of the inventions.

Michael

mariaf

03-20-2010, 05:35 PM

I know you and others will disagree but let's not rule out that Dr. Betz may be a bit bias towards VBS, something in which he has invested many many years, including his reputation and the reputation of Shriners Hospital.

Hi Michael,

First of all, while we may not agree on things like Spinecor or CLEAR, I hope you know the opinions I post here are meant with the intention of helping others from that I have learned in the past decade since my son was diagnosed. I don't claim to know more than others who have spent years as well doing their homework but I do have some strong views as I'm sure you've guessed and can be quite candid.

But I respect the fact that you are surely trying to do what's best for your daughter.

Regarding the quote above, I disagree if when you say "bias" toward VBS you mean that Dr. Betz would make any false claims about it or recommend it for a child who was not a good candidate. I'm not sure what "bias" means in this case.

The one difference between, say, Dr. Betz and Dr. Rivard is while Dr. Rivard will tell a patient that no other brace will help her daughter, Dr. Betz will and HAS sent patients elsewhere for treatment. It could be that the wait at Shriners was long for VBS so he sent a patient to Dr. Vitale. I even know of one family who was considering either having VBS done in Philly or at Boston Children's and he recommended they go with Dr. Hresko in Boston since they'd be close to home and could get it done quicker. There are patients he has seen and told them that they were almost done growing and should just stick it out with their current brace, etc. He does not "push" VBS or even recommend it unless he feels the patient is a really good candidate for it. Most people hear of VBS and seek him out for a consult - many are told it's not a good optoin for them. He is not afraid to turn away business - I can't say the same about some of these other guys.

And of course this is only my opinion, but again regarding the above quote and Dr. Betz.....I have known him for six and a half years and know much of the staff at Shriners as well and how they regard him. He is not concerned about his reputation (it's already well established) or what is best for himself or even the hospital as much as he's concerned about what is in the best interest of the child. I've seen proof of this time and time again over the years. Again, I don't expect others who don't know him as well to have the same perspective.

michael1960

03-20-2010, 07:08 PM

Thanks Maria

I respect your opinion and have always valued it very much. And obviously I respect Dr. Betz as I am currently following his recommendations. Any of my comments that may feel otherwise are only for the purpose of discussion to show my respect to all professionals, including other orthopedic surgeons who are recommending some of the treatments you and others feel are not appropriate or proven for treating scoliosis.

We could probably have an endless debate on all the various treatments and all the doctors/professionals who recommend them. Our own personal opinions will be based/biased on our own experiences in life and our own personal pursuit of knowledge and pursuit to do what is best for our child. It is through these differences that we all grow together.

As you probably have learned I keep all options open and respect all those who have proceeded me and who have invested the time to make a difference, including doctors/professionals and all the parents.

I hope some day to have the wisdom to help those that follow me.

Thanks

mariaf

03-20-2010, 07:48 PM

Fair enough.

Karen Ocker

03-21-2010, 11:42 AM

This is why surgery for scoliosis was begun:

http://www.uihealthcare.com/depts/medmuseum/wallexhibits/scoliosis/history/treat1920.html

http://www.uihealthcare.com/depts/medmuseum/wallexhibits/scoliosis/scoliosis.html

These are museum exhibits.

Pooka1

03-21-2010, 01:27 PM

Again, I think, often, inventors are in it for all the right reasons

The question is not if they get into it for hte right reasons... medical professionals all do.

The real question is what do they do if/when the data don't support the efficacy claims of the invention? Do they honestly admit it or do they do something else? What exactly do they do in these situations?

That's where the rubber hits the road.

mamamax

03-21-2010, 02:37 PM

The question is not if they get into it for hte right reasons... medical professionals all do.
That's where the rubber hits the road.

No, they don't. I once had a pediatrician actually admit to me that she got into the profession solely for the money. Yes I changed doctors for my daughter after that. I doubt she is the only one with such motives.

Pooka1

03-21-2010, 02:38 PM

No, they don't. I once had a pediatricians actually admit to me that she got into the profession solely for the money. Yes I changed doctors for my daughter after that. I doubt she is the only one with such motives.

Any reason why you misquoted me by omitting a line?

mamamax

03-21-2010, 03:33 PM

No. Just wanted to express the reality that not all medical professionals are altruistic in nature. Sorry you felt misquoted - been there ... don't like it either ;-)

LynetteG

03-29-2010, 10:52 PM

I have experience with working with chiropractors through the Clear Institute - my experience was horrendous. I ended up in severe pain and black and blue bruising on my back. Finally after having to threaten getting my attorney involved, I managed to get a full refund. These people take advantage of desperate sufferers like myself of scoliosis. They see we are desperate to try anything before considering surgery, so they make all these promises to you, put you through torturous procedures, only to find out it's not worth the pain and suffering they put you through.

curvycakes

04-03-2010, 12:53 AM

hi all,

i read about the first page or so of this thread and cannot help but comment on it. i had personal experience with the clear institute, working with a chiropractor here at home under woggon's instruction. it is not fair to make the claims that these people are making, especially when they have this innate ability to twist words around in order to sound REALLY knowledgeable about correcting scoliosis. to the average person who doesn't know much about scoliosis (except that they have it, or a loved one has it), it's very easy to fall for this stuff. it's exactly what happened to me and my family, even after trying and realizing that the COPES brace was also a sham. i was SO into the idea of clear institute when i first started, and i'm sure the posts i had made supporting clear institute are still posted on this forum. it seemed justified at the time since i was getting correction and my rib hump was somehow not as noticeable. this was all short lived though.

what really irks me about this program is that the head chiropractors are getting chiropractors (miles away! states away! even countries away!) to go through with the program despite the lack of evidence. i suppose my chiropractor was too nice and fell in the trap without testing woggon and his colleagues. however, my chiropractor did start to reconsider woggon's credibility when he would suddenly be 'so busy' and 'out of town' when my curve was progressing, despite the intense treatments. my chiropractor needed advice and assistance on what to do with my curve (it was around 60 or so at this point) and no one was able to help him. it was horrible. my chiropractor was literally brought to tears during one of my appointments since he did not know how to help me and we had spent SO much money on this program. a reputable chiropractor with a determined spirit brought to TEARS in front of me in his own office, all because of the clear institute.

in the long run, my curve obviously did not improve, (however in the short run i might have gotten a10 degree improvement from xrays taken RIGHT after the treatments..). i had surgery last summer and plan on having a thoracoplasty this summer. of course, i now realize that surgery truly is the only option for correction and i could kick myself for not doing it sooner (i'll be 21 this year). yet everything happens for a reason and i know i learned a lot from the experiences. :)

so bottom line, yes i have tried clear institute and i can only hope that i never undergo something as time consuming and money wasting ever again. i would be willing to explain more or discuss this in a private message if you'd like, seeing as how i just wanted to go ahead and give an overview.

LindaRacine

04-03-2010, 05:38 PM

Karen Ocker

04-03-2010, 05:51 PM

Might contacting your State Bureau of Consumer Affairs-they usually handle professional licenses- help avoid someone else from falling into your trap?

If there were insurance payments then the Insurance company needs to hear of this as well as the Board of Medical Examiners if applicable in your state.

LindaRacine

06-24-2010, 04:13 PM

Not that the folks at Clear have actually done any valid research, but I was looking for something else today, and came across a paper on the misuse of the Oswestry Disability Index instrument. Here are a few paragraphs that sum up the problem:

Use of the chiropractic version leads to an exaggeration of the treatment effect when compared with other studies, and enhances the proportion of patients meeting externally set criteria, such as those set by the FDA for ODI (v1.0 and vv2). It may mislead readers into believing that the reported results are “better” than those reported by others reporting disc replacement or fusion using an apparently similar outcome measure. If this trial is compared in a meta-analysis with others, inappropriate conclusions may be drawn.

In conclusion, we tamper with these questionnaires to the disadvantage of the whole spine community. If we want better instruments then they should be developed according to well-established rules. Above all, our reports must say exactly what we have done and what outcome measures we have used. Without this practice, we shall not advance clinical knowledge, devalue the reputation of spinal treatments, and waste the enormous cost of these trials.

--Linda

jrnyc

06-24-2010, 07:46 PM

what was that post towards the beginning of this thread from hope404 about the brain holding the curve by way of some neuromuscular thingamajig...:rolleyes: sorry, but i am not bothering to go back and do an exact quote on that...

maybe i am not smart enuf for my brain to "hold" a curve reduction...or my brain isnt big enuf...or wide enuf...or fat enuf...i'd really like to believe that such a thing was possible...with curves of any size...the day i believe that a 60 or 90 or 100 degree curve can be held at bay by the brain......or 10 degree either, for that matter...

and...about someone who got a "cure" not writing in again to the forum...i think most any of us would shout it from the rooftops!

it is becoming difficult...almost painful...for me to read some of the ...."treatments"..... like Clear....... suggested by some on forum...maybe i just dont have the patience anymore...
i dont want to say what i think of this stuff...i shouldnt use language like that:rolleyes:
everyone can believe whatever they'd like, of course...we live in a great country, i think......but to encourage others to do so...while they could possibly be getting some help from a real doctor................

jess

curvycakes

06-24-2010, 09:33 PM

I still receive emails from Clear Institute and I sometimes skim them just to see what's going on...I received an email yesterday about their very own forum. I'll probably take a look at it to see what I can find.

If anyone is interested here's the link:
http://www.clear-institute.org/Forums/tabid/55/Default.aspx

Maybe someone else has already posted about this, but I figured I'd link it anyway! :)

Oh, and something else relevant for this post. I know we're all looking for some real, stable success stories and there seem to be a bunch on there...I found that interesting. I don't know how long-term the success rates are but I'll be curious to check that out.

jrnyc

06-24-2010, 09:43 PM

hi curvycakes..
are their brains "holding" their curve corrections? :rolleyes:

jess

hope404

06-25-2010, 01:16 AM

not sure what I wrote back when???

won't go back and look

but one thing for sure,

people with scoliosis do not have a straight spine.:)

And we are ALL too dumb to figure out WHY!!!!what started the process...
why some...not others....

CLEAR has been very helpful for many people....

does it cure it ...NO!!!!

But is it 100% worthless...NO.

They always encourage early treatment, on small curves, which I think we all can agree on :)

I know several people who have been very happy with their CLEAR treatment results...and I know many who have seen minimal results.

Scoliotic curves
are very individual and unique.

If someone wants to try Scroth, Yoga for Scoliosis, CLEAR or any other alternative treatment...I say God bless 'em. Some people have found success and/or pain relief with these methods.

I'm thankful my daughter has tried various alternative methods(while still growing).. they have helped her tremendously. If I had told her not to attempt various therapies until studies were published we'd still be stuck with P.T. and muscle relaxants:mad:

I'm glad these alternative methods were available to her... what the "expert" recommended, was not working.

Pooka1

06-25-2010, 05:51 AM

They always encourage early treatment, on small curves, which I think we all can agree on :)

Yes they do and here's why... they know that the vast majority of curves will stay small even if you do nothing. So any treatment, Clear or eating ice cream, will appear to be 80-90% effective to a bunny who doesn't know AND ISN'T TOLD by Clear that most people require no treatment whatsoever. They exploit the bunnies if they don't admit upfront that 80-90% of their patients are wasting their money FULL STOP.

Now what they need to show is that they are helping the 10-20% of people whose small curves get larger and they especially need to show that they are lowering the perhaps 1 in 1,000 rate of folks who need fusion through their PT approach. They will NEVER show that because they are untrained in research and likely don't understand the number of patents required to show that with any certainty. In the mean time they are raking in the dough from the poor bunnies though Clear should not be treating children FULL STOP again. Chiros are not qualified to treat this serious medical condition.

This is a BBB issue in my opinion.

I'm thankful my daughter has tried various alternative methods(while still growing).. they have helped her tremendously. If I had told her not to attempt various therapies until studies were published we'd still be stuck with P.T. and muscle relaxants:mad:

I'm glad these alternative methods were available to her... what the "expert" recommended, was not working.

Well I'm very glad your daughter got help. Do you care to state exactly how she was helped by Clear?

Pooka1

06-25-2010, 06:00 AM

What is the evidence Clear has ever helped anyone with a larger curve? I suggest there is none.

They know this which is why they bang on about early treatment where they can at least appear to be successful in most cases of small curves. But their success rate is identical to the success rate of watching and waiting. The main difference is Clear costs money and wastes time when the kid could be doing something worthwhile like observing nature.

Pooka1

06-25-2010, 06:21 AM

Linda posted an article entitled:

"Revision rates following primary adult spinal deformity surgery: six hundred forty-three consecutive patients followed-up to twenty-two years postoperative.

What Clear needs to do is publish a similar study wherein they follow up after 2 years a cohort of over 600 patients who they treated. And they need compare it to what we know about watch and wait.

You will NEVER see that study. Andromeda will collide with our galaxy before that study occurs. The sun will blow up before that study occurs. Both those events will occur (not might occur) in ~ 5 billion years.

That is the difference between science/medicine/reality in the case of surgeons and surgery on the one hand and pseudoscience/chiro/nonsense in the case of chiros and other untrained people on the other.

LindaRacine

06-25-2010, 10:23 AM

They always encourage early treatment, on small curves, which I think we all can agree on :)

Sorry, not me. As Sharon mentions, the vast majority of small curves will never progress to the point where they're causing pain or are otherwise in need of correction. As I've mentioned in several other threads, there is a HUGE cost to treating small curves. It's thought that about 10% of the population have curves of about 10 degrees or greater. I think about 90% of that 10% have curves below 20 degrees. If all of those people are treated, the cost of healthcare will skyrocket.

--Linda

mariaf

06-25-2010, 10:41 AM

As Sharon mentions, the vast majority of small curves will never progress to the point where they're causing pain or are otherwise in need of correction.

--Linda

Good point. I recall when my son was first diagnosed, it seemed like EVERYONE knew somebody who had had scoliosis as a teenager (their niece, their neighbor's kid, etc.). But when I pressed for more information, in almost all cases I learned they were referring to a 10 or 15 degree curve that never required treatment and never progressed.

Pooka1

06-25-2010, 10:48 AM

Sorry, not me. As Sharon mentions, the vast majority of small curves will never progress to the point where they're causing pain or are otherwise in need of correction. As I've mentioned in several other threads, there is a HUGE cost to treating small curves. It's thought that about 10% of the population have curves of about 10 degrees or greater. I think about 90% of that 10% have curves below 20 degrees. If all of those people are treated, the cost of healthcare will skyrocket.

--Linda

Yes plus Clear (or the other nonsense purveyors) can't even make the argument that all small curves should be treated in the hopes of avoiding surgey on the 1 in a 1,000 because there is no good evidence that any conservative treatment, and no evidence whatsoever that any alternative (i.e., non-scientific) treatment like Clear, has ever enabled a single patient to avoid surgery.

I suspect many parents would put their kids through an onerous treatment even if only 1 in a 1,000 would otherwise require surgey if the treatment was guaranteed to allow their kid to avoid surgery for life. Even I might consider that but only in consultation with my kid. But that is NOT on the table at present because there is no proven conservation/alternatove treatment for cases destined to be surgical. So it can't be justified not only from a cost perspective but also from a lack of efficacy perspective.

Clear are a bunch of chiros running a business. They shouldn't be treating kids.

ursulaj

11-11-2010, 01:54 PM

I have had moderate scoliosis T 25 L 22 my whole life and am now 41 years old. My youngest was diagnosed with scoliosis at age 5 with T35 and L33 in October 2009. After seeing a couple of orthos and doing some research we did the intensive program with Tony Naldo in St Cloud, FL. After 2 weeks of about 8 hours 5x a week my little girl curves were T24 and L22. Her gait visible improved and she didn't say her back hurt anymore. I did it too (for morale support!) and my curves went down to T 18 and L15 after two weeks and I felt amazing after the first week. I told my mom at the time that I felt 10 years younger!! We bought the STC (scoliosis traction chair) for about 4K (best money ever spent!) and continued DAILY home exercises for three months. Did a follow up after 3 months and the corrections for me improved by 2 degrees but hers got a bit worse by 3 degrees. She had grown quite a bit but her curves were still waaay better than before she started. We did another week of intensive and my daughters curves got knocked back to T 21 and L18. Did another follow up in June and she was just a couple of degrees worse but again had grown substantially.

Fast forward to today....my little girls curves are improving slowly as she grows. (She hovers between T 18-22 and L 15-18 depending on her rate of growth and the subsequent correction) We continue to do DAILY exercise protocol and follow up weekly with another chiropractor Alex Greaux in Miami who will soon be Clear certified and has a history of spinal correction. To an untrained eye she does not appear to have scoliosis....walks tall and straight , has tons of energy has almost level shoulders. The only thing is if you look closely her right shoulder blade protrudes a tiny bit.

As far as I'm concerned I have noticed the following improvements in my health and posture: Improved lung capacity and deeper breathing, my shoulders are now level (my bra strap doesn't always fall down like it did my whole life!), my waist is now curved on both sides instead of just one, my right arm hangs evenly at my hip instead of protruding off to the right a bit, I have improved range of motion with my right shoulder during exercise class and I have also seen my dizzy spells disappear as well as some bladder issues I developed two years prior to doing the CLEAR program.

Finally, my oldest daughter who is now 11 years was x rayed at Tony Nalda's office in Feb and had a L10 "C type) curve. I didn't do anything about it and when we followed up in June of 2010 she was L20. We started her on clear protocol using the STC (scoliosis traction chair) and head weight, hip weight, shoulder weight to follow up and after 6 weeks she was L6 and after another 4 weeks of protocol 3 to 4 times a week she was L3. Success! She stopped treatment and will have her follow up in 6 months to see if she has gotten any worse or stayed the same.. Her posture improved a LOT after treament and she didn't lean forward anymore with her head (like Lurch!) and walks absolutely straight now.

I think scoliosis is like diabetes or weight loss that must be managed. I don't think it ever goes away forever. It's just like if you want to stay healthy you must eat the right foods...if you don't then you will be fat and unhealthy. You must go to the right people that know how to manage it, (in this case Clear certified chiropractors) and if you do (and are willing to follow protocol!) then surgery or being disabled by a curve is avoidable.

Pooka1

11-11-2010, 05:39 PM

You must go to the right people that know how to manage it, (in this case Clear certified chiropractors) and if you do (and are willing to follow protocol!) then surgery or being disabled by a curve is avoidable.

The only people trained to deal with scoliosis are board certified orthopedic surgeons.

This might (or might not) interest you:

http://www.scoliosis.org/forum/showthread.php?t=11146

ursulaj

11-13-2010, 03:26 PM

See my post....Clear works if you work it:)

Pooka1

11-13-2010, 04:22 PM

See my post....Clear works if you work it:)

Are you going to do the Clear protocol the rest of your life?

Did you know Clear admits they have no results that prove their method is effective at avoiding surgery? Do you like paying for them to experiment on you, especially when they have no ability to analyze the results? Why aren't they paying you?

ursulaj

11-13-2010, 05:27 PM

Are you going to do the Clear protocol the rest of your life?

Did you know Clear admits they have no results that prove their method is effective at avoiding surgery? Do you like paying for them to experiment on you, especially when they have no ability to analyze the results? Why aren't they paying you?

I don't care much about studies, medical degress, qualifications, etc.....I only care about RESULTS for me and my loved ones....PERIOD. If something gives me results that are positive then I keep doing it. Clear is an excellent scoliosis MANAGEMENT program NOT a cure....By the way, there are very few "permanent cures" for any disease out there and even the medical establishment you seem to like uphold doesn't make any money back guarantees or promises regarding disease management or surgeries either. When was the last time you walked into any MD's office and he/she gave you a money back guarantee that they were going to permanently cure you of "whatever" with medicine or that a surgery was going to go off without a hitch... LOL!!!
The don't call it "practicing" medicine for nothing.....

You mention the lack of proof or studies with this method....All I have to say is that I have personally seen plenty of xrays at the Clear Chiro's offices I've been to of various patients' BEFORE and AFTER treatment that showed in most cases anywhere from 30-50% reductions. I also have talked to a lot of people while in the office during treatment asking them all kinds of questions like "so what do you think of this?" "are you getting results" "how long have you been at this" "what else have you tried" and so on. I'm an easy going, talkative person so I can get people to open up no problem.

What I'm saying is totally anecdotal but I have to say that everyone I talked to was VERY happy to OVERJOYED with the results they got or their children got with CLEAR. In discussing the program itself, everyone agreed it was rigorous, not cheap, and sometimes hard to keep up with because it's human nature to want to slack off and forget about it once when you get better. However, many felt that it was worth every minute and penny put into it once they felt the relief themselves or saw how it had benefited their children.

Therefore, I'm also am not overly obsessed with studies when I can talk with many actual people who have gotten results....their "experience story" is more important and relevant to me than some anonymous "study" conducted by people I don't know anything about whose motives for the study I'm not familiar with either.

Elisa

11-13-2010, 06:04 PM

I am just now learning about CLEAR but obviously need to do more research but was wondering if someone could state simply what exactly it is. Also, being in Canada, we generally don't pay for medical treatments so I'm not in tune to what things cost. How much does this CLEAR treatment cost on average?

mamamax

11-14-2010, 01:16 PM

Congratulations ursulaj - may the success continue for you and your family!

I can't help but notice that improved lung function comes along with all this. Something Martha Hawes achieved and something Schroth achieves. Now Martha of course did not use bracing, CLEAR, or Schroth. So this seemingly reoccurring improvement in lung function going hand in hand with curvature reduction, is a very curious thing to me.

mamandcrm

11-15-2010, 10:24 AM

I have a question for those who have done the Clear program. At what point in the program do they do the x-rays? By that I mean, how much time elapses between the conclusion of the exercises (or whatever) and the x-ray--is it minutes, hours, days, weeks? I am uncertain when people talk about their improved out of brace results after Clear, what the timing is of the x-ray. Thanks

michael1960

11-15-2010, 11:06 AM

mamandcrm

Below is your question:

I have a question for those who have done the Clear program. At what point in the program do they do the x-rays? By that I mean, how much time elapses between the conclusion of the exercises (or whatever) and the x-ray--is it minutes, hours, days, weeks? I am uncertain when people talk about their improved out of brace results after Clear, what the timing is of the x-ray. Thanks

As you know we (Syd and I) have created and followed our own program that is not approved or very well accepted by any surgeon, chiropractor, physical therapist, or orthotist. But we are doing what we think is best based on many studies and the input of many different professionals.

As stated before in other posts Syd has been wearing the SpineCor since last November (2009) when she was 36 degrees. Then in January she did the 2 week Clear program with Dr. Sid in Manhattan. We picked Dr. Sid because he was the only Clear person who believed in Clear and bracing (with the SpineCor). And after visiting Dr. Betz on VBS at Shriners Hospital Syd is now also wearing a Boston brace. And we have done a second 2 week treatment with Dr. Sid in June.

Being the engineering type person that I am, I am very involved in every measurement, technique, etc. and try to not mix too many techniques so that I can evaluate the success of only one or two methods. While Syd is doing all of these mentioned above, there have been periods of time we did only one or two treatments to evaluate the results.

But with all that said Syd has gone from 36 deg to about 18-20 degrees (48 hours out of brace for all measurements) between October 2009 and June 2010. I am very pleased with these results. And in this process we were once considered a VBS with hybrid rod candidate and now she is no longer even considered a VBS candidate. That is good and bad news.

And I have my own theory on what Clear can do along with bracing, but no proof except my own child's results. But I do believe one result of Clear is a spine that is loosened that will enable it to move better with bracing. And my last visit at Dr. Sid's proved that theory. We went into the session with a 10 deg in-brace measurement and left with a 3 deg in-brace measurement. Studies show that out of brace correction is very dependent on in-brace correction.

And, to keep it fair, I do all the cobb angle calculations to reduce any error in the measurements or any bias. I have a tool from Shriners hospital that I use and when I visit the hospital I pay to have all my x-rays loaded on disc.

So, to answer your question, when are x-rays taken. I assume this varies by each Clear person. I discussed it with Dr. Sid before we started. We did a measurement before any treatment (48 hours out of brace). During the treatment Syd wore her SpineCor brace during some of the treatment and at night. By the way the treatment is two weeks about 6-8 hours per day (for us who are out of town). Only about 3-4 hours on weekends. This may vary by each Clear person. We did some x-rays about half way through the session to confirm we were getting the movement we wanted. Then we did one at the very end. In our case we had the weekend before the last measurement so Syd did not wear her brace. Then we followed a program at home 1-2 hours per day for about 8 weeks. The reduction is not significant but I will take 3-5 degrees anytime, especially if we can maintain it, and build on it. So after the first treatment Syd reduced from about 30 deg to maybe 26 deg, and after 8 weeks we held it. Then she went into the Boston brace. After about 2-3 months of that (and SpineCor) we were down to about 22-23 degrees. Then we did Clear again and in the end Syd was down to about 18-20 deg out of brace, and 10 deg down to 3 deg in brace. I was very excited to leave there with her around 3 deg in the Boston brace. The second time we did the treatment we completed the treatment for the day and Syd received an x-ray before we left, so it was within an hour of her last treatment.

Please let me know if you have any additional questions. I cannot recommend any Clear person other than Dr. Sid. I would have probably gone to Dr. Woggon but he did not support Syd wearing the SpineCor brace. I think the cost is around $5,000 - $6,000 for the two week program based on where you go. My insurance did not cover any of it, or the SpineCor brace. It has been a very expensive year along with all the travel expenses. But had to do it! We have one chance to get this right, especially while she is so young and we can reduce the curve. Our goal is to get as close to 10 degrees or less out of brace. I don't know if we will get there. I have considered going with the Cheneau brace with the theory (or hypothesis for those who care to make a difference) that we can get an overcorrection with it. I am a strong believer that if you want to get to 10 deg or even down to 0 deg we need an overcorrection in the brace.

I hope this is helpful.

Michael

michael1960

11-15-2010, 11:44 AM

ursulaj

I want you to know that I very much appreciate and support your thinking on what treatment should be followed. I have read well over 50+ studies on scoliosis. Most are not relevant to my daughter (8 yrs old, 36 deg curve, etc.). And my daughter has been to 4 pediatric orthopedic surgeons, 3 chiropractors specializing in scoliosis, including one in Schroth, 3 orthotists, and two physical therapists.

The only thing constant about all of them is that that they do not agree on treatment for scoliosis. And some of them, including one pediatric orthopedic surgeons changed his minds between one visit and the next. When I suggested bracing as a solution I was told it would not work, only later to be told by the same surgeon that my daughter is an ideal candidate for bracing. Figure that one out. But I still very much value his input and recommendations.

And in the beginning I was told by every pediatric orthopedic surgeon that the curve could not be reduced, but only maintained. I think most of them were reading the adolescent studies, not the juvenile ones (because there are none or very few juvenile bracing studies). Juveniles seem to have much greater success in curve reduction than adolescents. So, it is hard to follow studies (that may or may not be biased and may or may not be relevant) and it is hard to take any single doctor/professionals advice as the single only right answer.

Last year I met with three orthopedic pediatric surgeons and all 3 had different treatment recommendations. One said bracing would never work for my daughter and we should not do it, another recommended the Charleston brace, and the third recommended the SpineCor brace. Again, I very much value the input from all of these surgeons. I don't discredit any of them, but they don't have a proven solution to recommend, only suggestions and ideas.

This is when I learned that I needed to do what is best for my child taking the professional advice from several people AND... listening to the parents of children who have a daughter at about the same age, especially those who were very similar (30+ deg thoracic curve, age 8). When I see reductions down to 20 deg or even 10 deg I am going to listen to these people, and I am going to value their input. It does not mean I will follow it exactly, but I will add it to what I already know.

My daughter has done Clear, wears a SpineCor brace (to school and to play sports), and also a Boston brace (at home and at night). Every doctor/professional that I tell this to tells me it will not work, that physcial therapy has no impact, and that the wearing of two different braces (let alone one single brace), will not work.

My daughter is down from 36 deg to almost 18-20 deg between Nov 2009 - Jun 2010. I don't know if we can hold this improvement or whether we can continue to get more improvement. But we are going to continue this treatment program. I have also narrowed the doctor/professionals down to Dr. Betz (pediatric orthopedic surgeon) at Shriners Hospital in Philadelphia and Dr. Sid Clear/Spinecor chiropractor in Manhattan. I trust them and they have both kept an open mind on my daughter's treatment. Finding a doctor/professional (or two in my case) with an open mind enough to respect the value of other treatments is very difficult. While Dr. Betz may not support Clear and the SpineCor brace, he has been open to it if that is what we want to do. However, he would prefer my daughter spend much more time in the Boston brace (me too). And Dr. Sid, who supports Clear and the SpineCor brace does not support a hard brace like the Boston brace but he is open to seeing what results we get with his treatment and the Boston brace. I can't ask for anything more than that from each of them.

Thanks again for your comments.

I wish you great success.

Michael

mamandcrm

11-15-2010, 01:52 PM

Thank you for your reply Michael. I guess it just kind of varies. We are not looking into Clear as a treatment option, I was just curious as I do read others posts about it. BTW, G has never had an overcorrection with her brace that we are aware of (we don't do in-brace x-rays anymore), and her curve has gotten quite low. But every kid is different. At this point in-brace overcorrection is something we try to avoid because there is a risk of actual overcorrection and creating a new curve in the opposite direction. :eek:

I am happy to hear that you are finding success with reducing your little girl's curve. Continued good luck!

Pooka1

11-15-2010, 02:39 PM

That's some very clear thinking in a sea of uncertainty.

I invite folks to compare and contrast that clarity with the stuff on Fix's Clear site coming from those chiros (Morningstar and other evidence-based chiros not included).

mamamax

11-15-2010, 05:30 PM

Michael - It is good to hear from you and good to know that Syd continues to get good results. Best wishes for continued success!

ursulaj

11-21-2010, 05:25 AM

I noticed improved lung function by like my third or fourth day while doing intensive treatment....it was like I took a deep breath and noticed that that I still had more room to inhale...sounds silly saying it like that but it's so true! I've also heard the same thing from many others I've talked to. It's one of the very first things you notice.

Congratulations ursulaj - may the success continue for you and your family!

I can't help but notice that improved lung function comes along with all this. Something Martha Hawes achieved and something Schroth achieves. Now Martha of course did not use bracing, CLEAR, or Schroth. So this seemingly reoccurring improvement in lung function going hand in hand with curvature reduction, is a very curious thing to me.

ursulaj

11-21-2010, 05:46 AM

You get xrayed from different angles in very beginning before you start and then in the middle right after what Clear calls your "set" exercises. Based on the results you either contintue with what you are doing or your routine gets modified if the results are not what the Dr. is looking for. You also get xrayed at the very end after your last "set" exercise. Then you are sent home with your daily routine for 3 months. Then on follow up day you are xrayed when you walk in the office to see how the correction has held. You are then advised as to what to do next....keep doing what you're doing and come back for another recheck in "x" amount of months or come back for another intensive session, or whatever it is. From that point depending on how far you are from a Clear center you are put on a schedule (this also depends on your availability, resources, etc.). Most Dr. will probably want to shoot an xray once a month in the beginning at least to monitor progress and then maybe once every two to three months after that.

I have a question for those who have done the Clear program. At what point in the program do they do the x-rays? By that I mean, how much time elapses between the conclusion of the exercises (or whatever) and the x-ray--is it minutes, hours, days, weeks? I am uncertain when people talk about their improved out of brace results after Clear, what the timing is of the x-ray. Thanks