What do you think?

[philfista]

What do you think of the Clear Institute type of therapy? Read through the web site and i think it makes perfect sense what they are trying to do.

Has anyone been to this clinic?

[Karen Ocker]

Do a search of this Forum and learn the experiences of people who tried it.

[txmarinemom]

What part makes "perfect sense"?

[Pooka1]

What part makes "perfect sense"?

Good question. The consultant for Quackwatch would probably like to know also since that "perfect sense" business seemed to have escaped them when reviewing the Schroth literature (such that it is).

Rather than making perfect sense, it seems quacky to me.

[discombobulated]

Philfista,

I know we would all love to find a non-surgical solution to our scoliosis, but like the others, I would really strongly suggest that you look more into this CLEAR Institute's methods & outcomes before you hand over any money.

I'm deeply concerned about many partial- & entirely wrong "facts" presented on this section of CLEAR's website. I can tell you from current research + my experiences that many of the "facts" presented there are inconsistent with well-established modern medicine. I'm not posting to devalue your opinions about this Institute (nor to start a fight), but I hope to give you some direction if you'd like to investigate its claims further.

1. there are no reported cases of scoliosis being improved by observation alone
Yes, this may be true - but it is also true that observation is conducted to ensure that only people whose curves progress & need treatment are treated. Many curves stabilise at a low angle, and mild scoliosis gives patients no troubles at all. In fact, several surgeons have told me that it's not uncommon for people in the general public to have mild scoliosis & never know it. When many curves will not progress to cause trouble or need treatment - why should people with mild curves pay high fees for any treatment without knowing that it will actually be needed??

2. Some studies have found that rates of breast cancer almost doubled in scoliosis patients who had been subjected to "observation".
I'm sorry, but this statement sets my "scare tactics" alarm bells clanging! There are no citations made to the studies that allegedly found these results, so you have no way of evaluating the quality of these studies or their conclusions. Perhaps someone will prove me wrong, but I have never heard of such statistics.

3. In every case, all corrective benefit is lost very quickly once the patient stops wearing the brace, and the general consensus is that bracing may prove helpful for some, but not for others.
Again, no citation is given for the very broad claim that "in EVERY case, ALL corrective benefit is lost...". Bracing does have a long history, but has come a long way through modern medical research, & for some individuals (to the best of my knowledge) can achieve lasting results; most prolifically, I believe this is true of modern techniques like serial casting used for infants. In the above quote, even the Institute itself acknowledges that "bracing may prove helpful for some". Additionally, it can be very difficult for researchers to evaluate the effectiveness of bracing, for the very reasons the website describes: "not every doctor prescribes the braces to be used in the same manner, and not every patient may follow their doctor's recommendations to the same extent"....but differing, even conflicting, study results do not equate to failure of the method - often just shortcomings in the study design &/or its participants' involvement. Nevertheless, as the website notes, bracing does not work for everyone, & for some people, doctors do recommend surgery. Which leads me to...

4. research has consistently shown that surgery - which primarily focuses upon the sideways bending, and does little to address the rotation of the spine (and hence the rib protrusion) - will actually cause the rib arch to worsen [citations]...
Yes, this portion provides references to authors whose studies allegedly drew these conclusions; however, see that there is no "References" section in the article, so the website in fact provides very little information about if or where you can find these studies in publication, & again leaves you with no material to evaluate with your own wits. I can tell you that every one of my 3 scoliosis surgeries, like those done all over the world has addressed rotation of my spine + rib protrusion, & my surgeons have all achieved fantastic correction with both the "sideways bending" and the spinal rotation. New instrumentation is continually being developed & is highly advanced these days. Also, surgeons bend the rods to ensure correct lordosis is maintained in the lumbar spine &/or correct kyphosis is maintained in the upper spine, so to avoid later problems. Please note that the fact that I have now had 3 spinal fusions is entirely unrelated to medical techniques or instrumentation - it is due to my pre-existing, complicated medical conditions.

5. the theory that un-fused regions of the spine become more mobile to compensate for the lack of motion at fused regions is, in a word, incorrect. A study published in Spine in 2002 found that mobility was decreased not only in the fused area, but also in the un-fused regions of the spine. The authors explicitly stated that, "the lack of compensatory increase at un-fused regions contradicts current theory".
*Sigh*...again, lack of proper referencing (as far as I can see - please correct me if I'm wrong). Also, the nature of scientific research & progress is rarely linear & 100% in agreeance; however, the paper's (unidentified) authors note that it is "current theory" that compensation is likely to occur in un-fused regions, & this strongly implies that it is backed by a reasonable amount of scientific evidence. A single study (of unknown quality) that contradicts previous results is not revolutionary, & does not mean that any or all prior studies have reached wholly or partly incorrect conclusions. Any number of factors could have differed between these studies.

6. The rate of hardware failure is virtually 100%.
You know what? This may well be somewhere near true - sounds scary, but doesn't necessarily mean revision surgery is ever needed! The metal is placed in order to straighten the spine originally, & then to provide something of a "trainer" for your own bone to grow over the top of to provide stable fusion of the spine. Your own bone is much stronger even than the metal used during the surgery, & this is why if the fusion process does not occur properly, it is considered a problem. Many people live with broken hardware without any problems - & some don't even realise! As you've no doubt read, though, hardware failure can cause pain or other problems for some people.

7. Another study found that amongst seventy-four patients who underwent the surgery, pseudoarthrosis (failed fusion) occurred in 27% of patients within a few years after the procedure.
This pseudoarthrosis is what I refer to above - the failure of the patient's bone to grow properly over the inserted metal, & I believe it more often presents as a problem than hardware failure. That said, the 27% figure seems, to me, far too high to be the clinically accepted figure. Again, please note that no citation/s have been provided to allow you to evaluate the study/ies that may have found this figure, & you have no way of knowing whether this 27% figure may relate to a very specialised sub-set of patients (such as those who, like myself, have unrelated bone issues). Also, a study of 74 patients is tiny & raises many alarm bells for me from both research design & statistical analysis viewpoints.

Some thoughts about the section toward the bottom of the page regarding the CLEAR method...

1. Although hundreds of doctors have taken the seminar, only a few dozen have made the decision to dedicate their time & energy towards working with scoliosis cases.
This I don't doubt. I believe that many doctors would run a mile when faced with info anywhere close to that presented on CLEAR's website.

2. The correction achieved by the doctor will not be permanent without the patient's commitment to rehabilitating the muscles & ligaments of their spine that have deformed over time in response to the scoliosis
Please note the section that I put in italics - even if we assume that the CLEAR method does as it says and rehabilitates "the muscles & ligaments of the spine that have deformed over time in response to the scoliosis", this clearly does not address the cause - that is, the scoliosis, to which the muscles & ligaments "responds". This text clearly implies that the scoliosis occurs independently of the muscles & ligaments, & the best that the CLEAR Institute can offer is to (allegedly) work with the results of scoliosis, not the causal issue of incorrect curvature of the spine. In contrast, bracing & most especially surgery seek to alleviate the actual cause of scoliosis - that is, the incorrect manner in which the spine has grown. By doing this, surgery also alleviates the muscle & even nerve pain that often accompanies scoliosis - as well as common scoliosis complications such as pressure exerted by the spine on internal organs, including the heart & lungs. Correcting soft tissue alone will be unable to achieve such affects, as far as I can tell. For the vast majority of patients, surgical correction is dramatic & permanent.

--

I'm sorry my post became so long, & I am at the moment [still recovering from recent surgery] not up to staying up much longer to find you good quality scientific papers to back up my experiences & general knowledge right now. If you're interested, please let me know & I'll find you some articles on scoliosis & current treatment options. I'm very concerned by the CLEAR Institute's lack of published, quality studies on their alleged successes, & to be honest....quite shocked at the misrepresentations & misinformation they place on their website.

Of course, only you can decide which treatments you would like to pursue, but I do join in urging you to be extremely cautious of this "treatment" path. I hope this gives you some food for thought.

Whatever your path, I hope you find health & happiness in 2009 & beyond.

Take care.

[Pooka1]

Excellent post!

Great analysis.

I'm going to send that Clear Institute page to Quackwatch and Chirobase. I suspect they might want to list them, if not feature them.

[discombobulated]

Sharon, thanks for the tip about QuackWatch & Chirobase & also reporting the page - I'd never heard of these before. Well, not that I've ever pursued potentially "quack" treatments for anything & the idea of chiro scares the bee-gee-beeeeeeez outta me - but these sound like such useful websites. It looks like they are both run by the same non-profit....I don't suppose you know how comprehensive a database these are?

For anyone else interested, the links are:
QuackWatch
Chirobase

--

On a slightly different note, am I the only one who feels rather insulted on behalf of the chiropractors, doctors, physiotherapists, etc. who CLEAR [et al.] imply they somewhat represent? *Sigh* end of the day here, & I'm feeling pretty stupid again, but I hope that makes sense. Just seems to undermine what most reputable professionals would be taught & practice. Blah...nevermind me

[FixScoliosis]

discombobulated, you are right in pointing out that when a claim is made proper referencing should be stated. This is important so that others can evaluate if correct reasoning was used to come to that conclusion by reading the source material. This is a shortcoming from the CLEAR Institute in the web page in question.

in defense of philsta, stating that it makes perfect sense, I am not sure exactly what he refers to, but from what I know about the CLEAR method is that it is trying to restore normal spinal profile i.e. sagittal curves in order to treat Idiopathic Scoliosis.

To me, there is some logic to this when it comes to Idiopathic Scoliosis.
the profile of the spine is disrupted in thoracic idiopathic scoliosis curves. Dickson did state "(flattening or more usually reversal of the normal thoracic kyphosis at the apex of the scoliosis) is superimposed during growth, a progressive idiopathic scoliosis occurs. Idiopathic kyphoscoliosis cannot and does not exist,..." Castelein reported that the profile of the thoracic spine was different in cases that progressed in Boston braces than in the ones that remained stable. He further stated in his paper that "If certain spinal profiles seem to predispose for the development of idiopathic scoliosis, then it seems logical to study the sagittal shape of the spine for prognostic features relating to the development of progressive curves."

Now, if there is a non-surgical way to restore normal sagittal curves of the spine, surely we can agree that it would be feasible to explore how beneficial such a method would be in halting the progression of idiopathic scoliosis and what results it may deliver in correcting existing scoliosis.

Dickson statement in a another paper lend support to this reasoning, when he wrote, "when the thoracic kyphosis is restored the scoliotic deformity shows evidence of regression and this forms the basis of physiological treatment."

[Pooka1]

(snip) ...but from what I know about the CLEAR method is that it is trying to restore normal spinal profile i.e. sagittal curves in order to treat Idiopathic Scoliosis.

Whatever they are trying to do, they are still at the arm-waving stage with no evidence of efficacy as far as I can tell.

To me, there is some logic to this when it comes to Idiopathic Scoliosis.

All the logic in the world can't make up for a perfect vacuum of evidence it works. I did plenty of experiments in my research career which "should" have worked also.

(snip theory of spines) ...
Now, if there is a non-surgical way to restore normal sagittal curves of the spine, surely we can agree that it would be feasible to explore how beneficial such a method would be in halting the progression of idiopathic scoliosis and what results it may deliver in correcting existing scoliosis.

If there was a non-surgical way, wouldn't be have at least some evidence of it by now though? We do not.

Dickson statement in a another paper lend support to this reasoning, when he wrote, "when the thoracic kyphosis is restored the scoliotic deformity shows evidence of regression and this forms the basis of physiological treatment."

If there is a logical basis for physiological treatment then why is there no evidence of efficacy to date? Why do these guys tend to make quacky comments if it's all working and logical and on the up and up?

[discombobulated]

FS,

You're absolutely right that I'd love for a non-surgical, non-bracing treatment for scoliosis/kyphosis to be available.

I just have concerns about programs that claim results without independent, replicable, controlled, peer-reviewed studies to back their claims. A major concern of mine about the CLEAR program is also that it admits that it doesn't treat scoliosis [as in the actual spinal deformity], only soft-tissue responses to the spinal deformity - & despite this admission, it still appears to sell itself as a treatment for scoliosis.

I really hope that the future does hold some type/s of well-validated non-surgical/non-bracing treatments, even if only for mild curves. Medical progress over the years has been incredible, so I really do hope we see this some day (soon!). But, I believe it must treat the cause of the problem if this is what it claims to do, and I believe it must be shown effective via proper scientific method.

Peace to you.

[FixScoliosis]

Hi discombobulated

Sorry for my long reply.
Your concern is valid and shared by many others. I believe that few of the reason that CLEAR Institute has not published good controlled research about their method:
They are a fairly new in method of treatment and also as an institute if we considered them in relation to allopathic medical treatment or even tradition chiropractic. It was started in 2000 or 2001.
It took a few years to come up with a method that was working in showing results and has and still is being improved upon since then.
Limited resources, in the initial years there was only a few people involved and there is still not an abundance of resources, this is being addressed but will take time to be gathered and implemented.
I think the final and most difficult part is the difficulty in doing proper controlled studies when it comes to Idiopathic Scoliosis (IS), there is big issues with keeping controls as can be observed by reading other studies done. This will probably always be the biggest hurdle in researching scoliosis.

As for CLEAR institute not treating scoliosis, I am probably not the right person to answer this part, but will give my view on it.

The spine has adapted to its scoliosis shape for a few different reasons.
The individual vertebrae have grown more anteriorly and in many cases even in the neural foraminal arch. This is something that CLEAR method cannot change; maybe halt it, if spinal sagittal balance can be restored in growing adolescents.
Study on discs have shown that they do adapt to the wedging that they are subjected to in scoliosis and this adaptation starts showing in matter of weeks in laboratory studies. This allows treatment to address the discs and get results in correction. Similarly work can be done with muscles and ligaments.
Sagittal balance is disrupted in Thoracic Idiopathic Scoliosis; the normal spinal kyphosis is there to provide rotational stability to the spine. Once this is disrupted IS can begin to develop. So therefore CLEAR method is primarily trying to restore the normal sagittal balance in the spine and can that way also see correction of the scoliosis curves.
Without good sagittal curves in the spine it is difficult to achieve any correction of the spine and I believe this to be one of the main reason why bracing is so ineffective.

As a last point, if you would know of resources for good study designs that can be independent, replicable and controlled or have suggestions yourself, I am sure that members in CLEAR Institute would listen and be open to discussion.

Thanks for your attention

[discombobulated]

FS,

First, I wanted to say I really appreciate that we can talk about this without offending each other or arguing I love reading everyone's opinions/experiences here - thanks for sharing your thoughts & experiences, & taking the time to dig up those links.

That said, I'm not feeling at my best right now sorry, but just wanted to address a couple of points you raised...

I'm definitely not an expert in research design, but I do understand the ethical & methodological challenges inherent in any research into medical advances or (currently considered) alternative therapies. I don't pretend to have an answer to this, but medical studies/trials to establish efficacy & effectiveness of treatment are conducted routinely, & despite their limitations, have been of massive value throughout medical history. If CLEAR &/or other (currently considered) alternative therapies are to be widely recognised as legitimate scoli/kypho treatments, I do believe the companies need to employ whatever independent research design experts necessary to provide the type of evidence required of every other medical treatment. I do understand the difficulties of publishing well-designed independent longitudinal studies when a company is young, but in the very least I would expect details of ongoing independent studies, provisional reports, etc.. As I say [& we seem to agree on this ], this is a matter that should be left to the experts, but I do believe the challenges are not insurmountable, & certainly not a valid reason for CLEAR (et al.) to not even appear to attempt to engage in independent study.

Secondly...I'm still deeply concerned about the misinformation & at times outdated info presented on CLEAR's website. I believe in a patient's rights to try whatever treatment path/s they want to - but I also strongly believe that administrators of ALL types of treatment have the legal & ethical obligation to provide accurate, up-to-date info on the general medical condition, the possible pros of the treatment, & the possible risks. For me, CLEAR does not meet these criteria adequately.

And, most importantly - because of the current lack of evidence combined with the misinformation presented by CLEAR, the only answer I could provide to the Philfista, who asked for opinions on the CLEAR Institute was that I don't believe the Institute has adequately justified its methods. All I am saying is to follow what treatment path a patient wants, but to please be careful. I'm sure you'd agree that there are some people who will stoop to anything to make a dollar (or several thousand, to be more precise).

I really think that between our discussion, Philfista will have received enough info from both the "pros" & "cons" sides to make up his/her own mind about pursuing treatment from CLEAR or not.

I'm sorry I don't have more energy to devote to this discussion, because I do really enjoy learning from others' perspectives....but honestly, I don't. I think we both fundamentally agree on many things about this, but maybe need to "agree to disagree" on other points, & leave it at that But thank-you again for your time, thoughtfulness, & civility in the discussion - it is much appreciated.

Be well. Peace to you.


----

And Philfista - if you're still reading, I hope you have or soon will find the right treatment path for you. Take care.

[FixScoliosis]

Hi discombobulated

regarding your earlier comment of the CLEAR institute website.

I'm deeply concerned about many partial- & entirely wrong "facts" presented on this section of CLEAR's website. I can tell you from current research + my experiences that many of the "facts" presented there are inconsistent with well-established modern medicine.

reading the page again it clearly states in the first sentence of the page

"Credit is given to Martha C. Hawes, PhD, for her amazing & invaluable contribution to the body of scoliosis literature, Scoliosis and the Human Spine from which much of the following information received its inspiration and references."

I even wrote to CLEAR Institute for clarification and they did confirm that all the references do actually come from Hawes book "Scoliosis and the human spine" that can be bought through the NFS.

They did acknowledged that it would have been clearer and easier for the reader to have access to the references on their website and they will therefore amend their website accordingly. I hope that they will do that sooner than later.

[FixScoliosis]

Agree to disagree

Hi discombobulated

I understand that you are still recovering and want to you focus your energy to matters close to your heart and getting well.

Thanks for your candid response in this thread and I hope that you are getting better as days go by.

all the best to you

[discombobulated]

Hey FS,

Just wanted to say a quick thanks for pointing out where all the references on that page had come from - it indeed hadn't "clicked" for me that all the references there had come from that book. I'm still worried about what I'd call out-dated/misinformation/critical omissions, but it is great to at least know where the references came from. Thanks I really hope our info from both perspectives has helped Philfista &/or others, even a little with their decisions about the right treatment paths for them...

And thank-you for appreciating my position at the moment & the well wishes. It seems the exhaustion has hit me a lot more just in the last few days! But I suppose the healing is an energy-hungry process

Take care, & peace to you. Must sleep - Goodnight! (or have a great day )