Rehabilitation of adolescent patients with scoliosis—what do we know?

[mamamax]

In 2003 Dr. Hans Weiss wrote the above article with the editorial assistance of Martha Hawes. It was published in Pediatric Rehabilitation, 2003, VOL. 6, NO. 3–4, 183–194.

The file is too large to upload to the NSF forum, and yet it is an article which contains information that those of us interested in non surgical rehabilitation would find most interesting.

For those not familiar with his work, for decades he oversaw the operations of the Schroth Clinic in Germany, which is the gold standard of non surgical treatment in Europe. In the last decade, a reported 3,000 patients (approximate) have been treated there on a yearly basis, with varying degrees of success - many with most impressive results. This makes Dr. Weiss (MD (surgeon) and German School Chiropractor), someone who has seen and treated more scoliosis patients than anyone else in the world. Making him someone I pay attention to, with no exception.

There are answers to many questions in this paper. Of note also, Dr. Martha Hawes (who reduced her adult curvatures through non surgical methods, on a level matching reported surgical outcomes in cases like her own), provided him with editorial assistance in this paper. Martha did not use the Schroth method, which leaves me questioning, what were/are the elements of her own therapy which may share some commonality with Schroth? Improvement of chest wall, with exercise specific to curvature pattern, comes immediately to my mind.

For others who may wish to read this article, it can be accessed in another forum, found here in posting #10: http://www.fixscoliosis.com/threads/346-Scoliosis-and-Cor-Pulmonale

Access is limited to members I believe - but membership is open to all at no charge, and posting is optional :-)

Since NSF does not allow uploads of files this large - I'm just passing the info along to those who are interested.

[mamamax]

As some know, Dr. Weiss is an equestrian in his spare time. I was watching a few of his videos on his Youtube channel this evening and stumbled across one he had listed as a favorite of his.

Reminded me of my youngest sister who passed many years ago - she could ride like Stacey Westfall, having a special bond with a quarter horse named Sugarfoot. No bridle, no saddle .. only love. Enjoy!

http://www.youtube.com/watch?v=a-7v8Ck1crg

[mamamax]

Full Text Article (Weiss, Goodal, 2010) available in English, Spanish & French:

http://cirrie.buffalo.edu/encyclopedia/article.php?id=49&language=e#s4

Latest developments


The change from the classical 'teacher / pupil' setting to modern concepts of learning seem to allow a reduction of total training time of in-patient scoliosis rehabilitation to 14 days or even less, without reducing the effectiveness of treatment (Weiss et al. 2006a). The role of the physical therapist changes from being that of a teacher to a supervisor, who acts as a catalyser to empower the active role of the patients and to foster the ability of the patients to develop their individual treatment protocol by themselves via experiential learning.

This new concept called 'Integrated Scoliosis Rehabilitation (ISR)' is currently applied (Weiss 2007a) at the first few centres. 'Integrated' is used to describe the teamwork of all professionals 'acting as one'. The physician, physical therapist and (where available) psychologist are integrated in each others' work and are acting together in synchronicity in the diagnosis and treatment.

The limitation of this concept is that it is restricted to patients where scoliosis is the major problem. Patients with neuromuscular scoliosis and patients with a significant reduction of learning capability cannot be included in this treatment. The majority of the scoliotic population however, patients with idiopathic scoliosis (80 – 90% of all scoliosis) can easily be treated using the ISR - approach.

As has been shown, Scoliosis Intensive Rehabilitation (SIR), in its original form can no more be regarded as being effective when rehabilitation times have been reduced to 3-4 weeks, only (Weiss and Goodall 2009). The incidence of surgery for the patients receiving this in-patient program (Weiss, Weiss and Schaar 2003) is comparable to out-patient approaches (Maruyama et al. 2003, Rigo, Reiter and Weiss 2003), although the different studies have patient samples which are not necessarily comparable. The development of such research means that more intensive out-patient approaches seem more appropriate when one considers; time efficiency and new teaching approaches including experiential learning (ISR), as described within the book on "Best Practice" treatment (Weiss 2007a). Therefore an in-patient program, such as SIR is today regarded as outdated. Actually three day intensive programs based on the "experiential learning" approach of ISR are provided in the US, UK and in Germany at the first authors centre.

[Pooka1]

Actually three day intensive programs based on the "experiential learning" approach of ISR are provided in the US, UK and in Germany at the first authors centre.

I predict the Schroth centers in the US will be slow to adopt this if it is much less lucrative than in-patient treatment as is likely the case. In fact I doubt any of them will do this.

[mamamax]

I can appreciate the above comment, and am even grateful for it - thank you, sincerely.

What will such mean into the future? A good question. From the above article: The majority of the scoliotic population however, patients with idiopathic scoliosis (80 – 90% of all scoliosis) can easily be treated using the ISR - approach.

If ISR were widely implemented outside of large centers, this means large centers can only capture about 20% (and maybe far less) of the patient population, making large centers perhaps not so profitable. If the new Schroth is implemented on a large scale throughout the country, say in hospital affiliated PT departments, will large centers be able to remain open? If a patient is in the typical scoliotic population, they could benefit from a new Schroth implemented in hospital affiliated physical therapy departments - if one is not in the majority population, it is possible that treatment could become more difficult to obtain. A conundrum - with many unknowns.

It would seem the answer would be - to do both. Implement ISR in the large centers and also in hospital affiliated PT departments. Now the question becomes, will this be lucrative enough for the hospital affiliated therapy departments? The answer to that would seem at first, driven by geographics and patient population. Florida looks like a good start .. you know, home of the newly wed and the nearly dead ;-)

ISR covers a lot of territory. Application can be found as a non-surgical choice or post surgical choice when pain remains an issue. It will be interesting to see how its future unfolds. In the end if there were only one center in every major city in the country ... there would still be more than enough work to go around ... I think. And finances would have to become creative (like mine).

Bty ... excellent equestrian history above.

[mamamax]

Sharing a ride ...


http://www.youtube.com/watch?v=kWJ-p_1OGz8

[mamamax]

OMG ... now that is what I call sharing a ride. Awesome side by side and excellent commentary you offered. Smart Rattle Snake is a dead ringer for one of my late sister's horses: Rattler's Bobbie. Quite a show this one, loved the switch they made mid program. You know, I had to give up riding many years ago, no great loss to the world as sister was the show quality rider - but I to miss it. Thanking both you and Dr. Weiss for the recent visuals, helps me live vicariously :-)

[mamamax]

*faints*

ok ... Dr. Weiss comes out of the closet - meet the rock star!

http://www.youtube.com/watch?v=TD_JsDtopR0

http://www.youtube.com/watch?v=XtUCzrRN52k

http://www.youtube.com/watch?v=q6k4xlWj2BE

... Scary - What next?

[SandyC]

Mamamax
Scary is an understatement. I would not leave a daughter alone in the same room with this guy :(
SandyC

[Ballet Mom]

Hi mamamax!

I clicked on the first link and my immediate reaction was "Yikes! What does he think this is doing to his credibility?"

And then I watched a bit of the second two links and I actually changed my opinion a bit. I actually think that all these girls in a group dancing, wearing their braces out in the open with their "cool" doctor (to them at that age) is probably helping them get through their bracing. And anything that helps, is great in my book.

[Confusedmom]

OMG!!!:eek::eek::eek:

This guy is really freaking me out. I do agree that helping girls with their self-asteem, making them feel pretty, etc., is good. But let's leave that to parents and friends.

These videos make it appear like this middle-aged man is basically hot for teen (and young teen!) girls with scoliosis. He is even touching some of them in a couple of spots--and definitely caressing the braces and calling the girls "pretty" and "sexy."

Seriously, if I knew anything more about this man I would not only not let a daughter near him, but I would having the local authorities check him out.

Freaked out, disgusted and a little scared. :eek:

Evelyn

[hdugger]

You know, if he has *this* much free time, maybe he could publish some research results.

[mariaf]

OMG!!!:eek::eek::eek:

This guy is really freaking me out. I do agree that helping girls with their self-asteem, making them feel pretty, etc., is good. But let's leave that to parents and friends.

These videos make it appear like this middle-aged man is basically hot for teen (and young teen!) girls with scoliosis. He is even touching some of them in a couple of spots--and definitely caressing the braces and calling the girls "pretty" and "sexy."

Seriously, if I knew anything more about this man I would not only not let a daughter near him, but I would having the local authorities check him out.

Freaked out, disgusted and a little scared. :eek:

Evelyn

What she said!

[Pooka1]

You know, if he has *this* much free time, maybe he could publish some research results.

Don't be silly.

[mamamax]

The man has artistic talent - no denying that. Plays guitar, writes song, music, and choreographs ... started out as a physical therapist, became a surgeon - oversaw the operations at the German Schroth clinic for decades - writes prolifically (and scientifically), is an accomplished equestrian ... guess we could call him a genius, perhaps even a contemporary renaissance man.

By itself, video #1 is quite good and speaks well of his artistic talents. Videos #2 & 3: made in the 90's, obviously for in-house use to inspire motivation towards bracing compliance. A good idea. The content however is questionable, especially as it now appears uploaded to a venue that can be seen worldwide. Parents and patients who do not have any previous knowledge of the man - may be offended by the sexual undertones in these two videos. And that is not good. I'm not passing judgment, just making some observations.

I stumbled across these while viewing some other Spinecor bashing videos done by the good doctor. As you may suspect, this doesn't sit all that well with me - but I do know the history, and so - I am not necessarily surprised. What did surprise me was his need to negatively comment on another practitioner's posted video - yet he will remove from his videos, and ban posters who leave comments that even remotely question his method, or the "facts" that he posts. His "Spinecor Failures" series begs the question - has he developed a failure free brace? We wait for the literature.

As Dr. Weiss(Schroth), leaves the clinic (for reasons surrounded in secrecy), goes into private practice, and uses the tools of technology to promote himself - I would hope that he be aware of these things and use them constructively to better polish his image. Although, quite frankly he may not care about that, finding constructive criticism as flies buzzing around his head in need of swatting. The plight of the genius, not always seeing as the rest of the world sees.

I have been a bit guilty of hero worship of this man. And now I must ask: Genius or madman? We wait and watch, how ironic ... we shall see.

And as I wait for his newest literature - part of me hopes to see him do a Steve Martin/King Tut Tribute (http://www.youtube.com/watch?v=wgTPH5y1-ZI) - would be tres cool.:cool:

[mamamax]

Well yeah actually, some people do know that he is an accomplished equestrian. I had posted a sharing up-thread (posting #7), but he has since made it private. Guess he tires of the critique ...

[leahdragonfly]

Mamamax,

At the very least, his videos show extremely poor judgement, and a huge lack of professionalism. I find his videos revolting, myself.

I would NEVER allow him near my child (of either gender), that is for sure.

I hope he does not treat children now. The guy is wacko.

[mamamax]

Oh damn. I logged in and still can't see it.

Did you see it? Would that mean it became private only after you posted it?

If it was a video of him riding, there are any number of people including lower level types who could tell you whether or not he was "accomplished."

Yep, I saw it. As for "accomplishment," maybe we can agree there are many levels of this. I used to ride, but never would have called myself accomplished on any level. My youngest sister on the other hand, I would have called accomplished - she was show quality and had much encouragement from others (instructors and fellow show buddies) to set her sites on the Olympics. So, from my experience - I would call him accomplished and no doubt others would also .. present company excluded of course :-)

[CHRIS WBS]

[COLOR="Navy"]The man has artistic talent - no denying that. Plays guitar, writes song, music, and choreographs

I saw his questionable videos. You call that artistic talent? It pained me to view and listen to him.

[jrnyc]

genius? renaissance? i cannot believe anyone would use words like that to describe this!! creepy...absolutely inappropriate...there's no "genius" about it!!

jess

[mariaf]

I can't believe anyone would use words like that to describe him either, Jess.

I have lots of my own words to describe him (creepy, wacko, etc.)

IMHO he is a no-talent perv who has no business being around children.

[mamamax]

Do you suppose (anyone), that some judgments on all this *could* be emotion based and lacking in true evidence?

Keeps me on the fence - and watching while waiting (how ironical).

At least I think I know enough, to know that judgment without definitive evidence - may be poor judgment. And that of course puts me closer to the skeptic camp as I tip-toe through all things idiopathic ;-)

[SUSANNA FREDERI]

To all Moms who are trashing Dr. Weiss' name.

My daughter has been his patient for 3 years. We visit him twice a year for her therapy and bracing. I know many girls from other countries who are his patients. Dr. Weiss never touched any of them inappropriately. We watched those videos and laughed because they were funny. And you, ladies, happen to lack a sense of humor.
Thanks to Dr. Weiss our children are getting well without having a surgery!
That is what you should be talking about.
We were in Germany last month and we witnessed doctors from all over the world visiting Dr. Weiss in order to learn his method. American doctors should follow them!

[jrnyc]

i HAVE a sense of humor...and i dont think the videos are funny!
American doctors don't need his help!!

jess

[hdugger]

Thanks for posting, Susanna.

I'm a parent who has seen the effectiveness of exercise, massage, and stretching in improving my son's experience with scoliosis. He no longer has pain and his curve is much less noticeable.

So, given my experience, I'm inclined to think that the Schroth method holds promise. But, I am somewhat puzzled why Weiss is not publishing papers showing the effectiveness of his methods. Without those papers, it is very expensive for Americans to seek out this treatment (because its effectiveness has to be proven before our insurance will pay for it).

I see studies from other exercise proponents, like the SEAS people in Italy. And I've seen many papers from Weiss on other topics. But I don't see anything from him showing the effectiveness of his own treatment.

[jrnyc]

recommending exercise, stretching, etc. does not require creepy videos...

i cant imagine any scoliosis surgeon putting out such...garbage!

jess

[hdugger]

I think Susanna is suggesting, rightly, that we're somehow losing sight of the benefits of the practice in our reaction to the practitioner. Schroth does not equal Weiss - he didn't invent it, and he's not the person currently running the clinic in Germany.

He's the son of the person who invented it, and he likely spent long hours as a youth being surrounded by girls his age in braces. I'm sure that had some effect on his growing adolescent mind, but I'm not sure that any of that has anything to do with the practice itself.

[jrnyc]

that is not what i got from her post!

i did not see any criticism of methods...just of the creepy videos...and creepy is...creepy!

jess

[mamamax]

I think Susanna is suggesting, rightly, that we're somehow losing sight of the benefits of the practice in our reaction to the practitioner. Schroth does not equal Weiss - he didn't invent it, and he's not the person currently running the clinic in Germany.

He's the son of the person who invented it, and he likely spent long hours as a youth being surrounded by girls his age in braces. I'm sure that had some effect on his growing adolescent mind, but I'm not sure that any of that has anything to do with the practice itself.

Just a small clarification hdugger - he is: the son of Christina, who is the daughter of the inventor, Katharina. So, the clinic has been overseen by three generations. Katharina has passed, Christina is in retirement, and that leaves Hans as the only truly active family member remaining. His name was so linked with The Schroth Method, that it is rumored that he took his wife's name.

The web site for the clinic in Germany has been redesigned - personally, I preferred the old one.

http://www.asklepios.com/klinik/default.aspx?name=Asklepios_Klinik_Bad_Sobernheim

Hans has left the clinic - for reasons that remain unknown - and is now in private practice, with a New Schroth, or what is being called Power Schroth. Essentially the same method with some streamlining. As I understand it, the updated method can be taught to physical therapists in 3-7 days, and out-patient orientation takes about two weeks. The History remains long and interesting.

[mamamax]

We were in Germany last month and we witnessed doctors from all over the world visiting Dr. Weiss in order to learn his method. American doctors should follow them!

Yes they should Susanna. It is taking forever for the method to become known in this country. And thank you for your posting!

[jrnyc]

oh yes, i am sure American doctors will take him seriously if they see his videos! just what every doctor in this country wants to look at!
all it does is make him look like a buffoon!

jess

[Pooka1]

Were surgeons visiting him or other types of doctors like PhDs in muscle physiology, and non-medical folks like chiros and PT types?

The latter makes some sense. I am skeptical surgeons would visit him for any reason given he doesn't seem to do surgery any more and he publishes on a bunch of stuff EXCEPT he efficacy of Schroth and bracing. I have heard one surgeon refer to Weiss as a rehab doctor so it might not be clear Weiss is even a surgeon himself.

The fact that he has many pubs is not a point in his favor when you point out NONE show what patients want from PT and bracing... a permanent solution.

[mamamax]

Well, seems we all are watching ... is anybody reading?



Physiotherapy / Rehabilitation

Case report studies have demonstrated that measurable positive changes in the signs and symptoms of IS are correlated with physiotherapy treatment (Weiss 1991, Weiss 1993). Among over 800 patients, nearly every case revealed a small but significant improvement in chest expansion and a 14-19% improvement in VC after rehabilitation treatment (Weiss 1991). Among 794 adult patients with severe scoliosis, 55% exhibited at least one sign of right ventricular strain at admission and by the end of the study only 12% exhibited signs of impairment. Vital Capacity improved by 250 ml in the same adult population (Weiss 2003).

Among 107 patients mean Cobb angle decreased from 43 to 39 degrees, with improvements of up to 20 degrees in individual patients after in-patient rehabilitation (Weiss 2003).

Studies also have demonstrated significant improvements in pain (Weiss 1993, Weiss et al. 1999, Weiss 2003) and psychological distress (Weiss and Cherdron 1994, Weiss et al. 2006d, Freidel et al. 2008) in response to rehabilitation.

Results of a preliminary study were consistent with the possibility that incidence of progression among 181 patients treated with physiotherapy during the late 1980's was significantly less than the incidence that would be expected based on natural history surveys (Weiss 2003).

Another study to test the hypothesis that physiotherapy-based intervention can reduce incidence of progression in children with IS was performed 2003 with materials from 1989-1991 and an untreated control group (Weiss et al. 2003). A follow-up of the outcome of two prospective studies used the outcome parameter, incidence of progression (≥5°), in treated and untreated patient groups matched by age, sex, and degree of curvature at diagnosis, were included factors. A six-week scoliosis in-patient rehabilitation program offering patient-specific physiotherapy including intensive therapist-assisted exercise in diagnosis-matched groups was the method of treatment. The Incidence of progression in groups of untreated patients ranged from 1.5-fold (71.2% vs 46.7%) to 2.9-fold (55.8% vs 19.2%) higher than in groups of patients treated with rehabilitation, even when rehabilitation-treated groups included patients with more severe curvatures. The differences recorded were highly significant. The results of this study indicate that a supervised program of exercise-based therapy can reduce the incidence of progression in children with IS.

The results of this study however, have not been reproduced with patient samples undergoing in-patient rehabilitation with treatment times reduced to 3-4 weeks (Weiss and Goodall 2009).

At last a RCT on physiotherapy from China provides the physical medicine and rehabilitation approach to scoliosis with level Ib evidence and a level A recommendation (Negrini et al. 2008). Interestingly the approach used in this study seems not specific, however due to possible translation problems this issue should be investigated more closely in the near future.


Full Text Article (Weiss, Goodal, 2010) available in English, Spanish & French:

http://cirrie.buffalo.edu/encyclopedia/article.php?id=49&language=e#s4

[leahdragonfly]

Well Susanna, you sound a little defensive there! No one said anything at all about his methods or results. We were commenting on his profound and disturbing lack of professionalism, and his poor judgement. (and you too, mamamax).

I am wondering, would you be proud to show those videos to your daughter's grandparents or your friends, and would you tell them proudly that this is the professional who you have chosen to treat your daughter's scoliosis?

I am glad to hear he has never touched your daughter inappropriately--that is a relief. But I would sure be disgusted to wonder if my child's doctor was having inappropriate/sexual thoughts about my daughter's body. THAT is what people are concerned about.

By the way, I have a great sense of humor. And there is nothing funny about those videos.

[jrnyc]

i agree with both Sharon and Gayle..and all the other forum folks who find the videos...beyond disturbing!!

charming that he refers to the brace and "no better lover"..just charming!
all the lyrics are so inappropriate!

jess

[mamamax]

Well Susanna, you sound a little defensive there! No one said anything at all about his methods or results. We were commenting on his profound and disturbing lack of professionalism, and his poor judgement. (and you too, mamamax).


I don't think Susanna sounds all that defensive - and I would like to know more about her experience with the method.

Regarding the video and the attempt to judge it right or wrong ... that is going to be a matter of personal opinion, which we all are entitled to.

I am more disturbed by many other media forms used to program the masses than this video used to help youngsters adjust to all that is involved with bracing. Is it new and innovative? Yep. Profoundly disturbing? Not when compared to the larger world around it - and, were the video alone used to condemn a person ... I would say the evidence would then be - highly circumstantial, in my opinion.

[leahdragonfly]

Regarding the video and the attempt to judge it right or wrong ... that is going to be a matter of personal opinion, which we all are entitled to.

I am more disturbed by many other media forms used to program the masses than this video used to help youngsters adjust to all that is involved with bracing. Is it new and innovative? Yep. Profoundly disturbing? Not when compared to the larger world around it -



mamamax,

Wag the dog.

Jumping off this thread now.

[mamamax]

mamamax,

Wag the dog.

Jumping off this thread now.

Code for: I missed my calling as a campaign manager?

[mamamax]

:D
I have also seen the pictures of him riding when I was visiting him. Doesn't mean he's 'accomplished' (like I'd know what that means anyway). But I seem to remember him talking about his horses/stable one night. It can at least be said that he's been on a horse at least once. :)

Skevimc ... you have no idea how many times I have thought of your quote from, Ascher was it? I would like to know more about your experience at the Clinic. What were your goals in going - and what were your parting conclusions? Any humor in between would also be interesting.

[mamamax]

So, given my experience, I'm inclined to think that the Schroth method holds promise. But, I am somewhat puzzled why Weiss is not publishing papers showing the effectiveness of his methods. Without those papers, it is very expensive for Americans to seek out this treatment (because its effectiveness has to be proven before our insurance will pay for it).


Yes. He has been a prolific publisher. I wonder if being associated with the German Clinic was somewhat limiting to him for corporate reasons not fully understood. Now that he is in private practice with a modified, or new method (which is built upon the old), we may see what we have been looking for. Seems this has begun with his most recent 2010 publication: http://cirrie.buffalo.edu/encyclopedia/article.php?id=49&language=e#article

I look forward to the day when the new - or - Power Schroth will be available to us through physical therapy departments, and covered by insurance. Beyond that I would hope that one day, there will be free clinics reaching those with even more limited financial resources. While we are closer to this than years ago - I fear we still have very far to go.

If one wanted to read all things Weiss - well, this would be quite a project - and an even larger one considering the German writings which have yet to be translated. For example (in English only, as the first author):


Weiss HR, Goodall D. 2009. Is Scoliosis In-patient rehabilitation clinically effective? A systematic Pub Med review. Paper presented at the 6th annual meeting of the SOSORT, May 20th-23rd, Lyon 2009

Weiss HR, Werkmann M. 2009a. Unspecific chronic low back pain - a simple functional classification tested in a case series of patients with spinal deformities. Scoliosis 4:4.

Weiss HR, Werkmann M. 2009b. Treatment of chronic low back pain in patients with spinal deformities using a sagittal re-alignment brace. Scoliosis. 4:7.

Weiss HR. 2008a. Adolescent Idiopathic Scoliosis (AIS) - an indication for surgery? A systematic review of the literature. Disability and Rehabilitation 30(10):799-807.

Weiss HR. 2008b. Conservative treatment in patients with severe congenital scoliosis – presentation of three cases. Proceedings of the 5th international conference on conservative management of spinal deformities, Athens, April 2-5.

Weiss HR, Goodall D. 2008. The treatment of adolescent idiopathic scoliosis (AIS) according to present evidence. A systematic review. European Journal of Physical and Rehabilitation Medicine 44(2):177-93.

Weiss HR, Bohr S. 2008. Conservative Treatment in patients with scoliosis due to Prader-Willi Syndrome. Proceedings of the 5th. international conference on conservative management of spinal deformities, Athens, April 2-5.

Weiss HR, Rigo M. 2008. The chêneau concept of bracing - actual standards. Studies in Health Technology and Informatics 135:291-302.

Weiss HR, Maier-Hennes A. 2008. Specific exercises in the treatment of scoliosis - differential indication. Studies in Health Technology and Informatics 135:173-90.

Weiss HR. 2007a. Best Practice in Conservative Scoliosis Care. Pflaum Munich, 2nd ed.

Weiss HR. 2007b. Adolescent Idiopathic Scoliosis - case report of a patient with clinical deterioration after surgery. Patient Safety in Surgery. Dec 19;1:7. Available from:
http://www.pssjournal.com/content/1/1/7

Weiss HR. 2007c. Is there a body of evidence for the treatment of patients with Adolescent Idiopathic Scoliosis (AIS)? Scoliosis Dec 31;2:19. Available from:
http://www.scoliosisjournal.com/content/2/1/19

Weiss HR, Werkmann M, Stephan C. 2007a. Brace related stress in scoliosis patients - Comparison of different concepts of bracing. Scoliosis Aug 20;2:10. Available from:
http://www.scoliosisjournal.com/content/2/1/10

Weiss HR, Werkmann M, Stephan C. 2007b. Correction effects of the ScoliOlogiC "Chêneau light" brace in patients with scoliosis. Scoliosis Jan 26;2:2. Available from:
http://www.scoliosisjournal.com/content/2/1/2

Weiss HR, Dallmayer R. 2006a. Brace treatment of spinal claudication in an adolescent with a grade IV spondylosisthesis--a case report. Studies in Health Technology and Informatics 123:590-3.

Weiss HR, Dallmayer R. 2006b. Brace treatment of spinal claudication in an adult with lumbar scoliosis--a case report. Studies in Health Technology and Informatics 123:586-9.

Weiss HR, Klein R. 2006. Improving excellence in scoliosis rehabilitation: a controlled study of matched pairs. Pediatric Rehabilitation 9(3):190-200.

Weiss HR, Hollaender M, Klein R. 2006a. ADL based scoliosis rehabilitation--the key to an improvement of time-efficiency? Studies in Health Technology and Informatics 123:594-8.

Weiss HR, Dallmayer R, Stephan C. 2006b. First results of pain treatment in scoliosis patients using a sagittal realignment brace. Studies in Health Technology and Informatics 123:582-5.

Weiss HR, Negrini S, Rigo M, Kotwicki T, Hawes MC, Grivas TB, Maruyama T, Landauer F. 2006c. Indications for conservative management of scoliosis (guidelines). Scoliosis 1:5.

Weiss HR, Reichel D, Schanz J, Zimmermann-Gudd S. 2006d. Deformity related stress in adolescents with AIS. Studies in Health Technology and Informatics 123:347-51.

Weiss HR. 2005. Das "Sagittal Realignment Brace" (physio-logic ® brace) in der Behandlung von erwachsenen Skoliosepatienten mit chronifiziertem Rückenschmerz. MOT 125: 45-54.

Weiss HR. 2003. Rehabilitation of adolescent patients with scoliosis--what do we know? A review of the literature. Pediatric Rehabilitation 6(3-4):183-94.

Weiss HR, Weiss G, Schaar HJ. 2003. Incidence of surgery in conservatively treated patients with scoliosis. Pediatric Rehabilitation 6:111-8.

Weiss HR, Weiss G, Petermann F. 2003. Incidence of curvature progression in idiopathic scoliosis patients treated with scoliosis in-patient rehabilitation (SIR): an age- and sex-matched controlled study. Pediatric Rehabilitation 6:23-30.

Weiss HR. 2002. Rehabilitation of scoliosis patients with pain after surgery. Studies in Health Technology and Informatics 88:250-3.

Weiss HR, Verres Ch, Steffan K, Heckel I. 1999. Scoliosis and Pain – is there any Relationship? In: IAF Stokes (editor) Research into Spinal Deformities 2, IOS Press.

Weiss HR, Lohschmidt K, el-Obeidi N, Verres C. 1997. Preliminary results and worst-case analysis of in patient scoliosis rehabilitation. Pediatric Rehabilitation 1(1):35-40.

Weiss HR. 1995. Standard der Orthesenversorgung in der Skoliosebehandlung. Med Orth Tech, 115:323-330.

Weiss HR, Cherdron J. 1994. [Effects of Schroth's rehabilitation program on the self concept of scoliosis patients]. Rehabilitation (Stuttg). 33(1):31-4.

Weiss HR. 1993. Scoliosis-Related Pain in Adults – Treatment Influences. European Journal of Physical Medicine and Rehabilitation 3:91-94.

Weiss HR. 1991. The effect of an exercise program on vital capacity and rib mobility in patients with idiopathic scoliosis. Spine 16(1):88-93.

[mamamax]

Code for: I missed my calling as a campaign manager?



Of course, a really good campaign manager would have told Dr. Weiss that to proclaim innocence without being accused of guilt ... does not look good.

Therefore, adding references (or the source of accusation) to the disclaimer would be better than to have no reference at all.

Now I'm joining Jess and taking an all too brief vacation from all this. Will be on the Gulf of Mexico beaches ... that part yet untainted by the oil.

[mamamax]

http://publicationslist.org/hr.weiss


+ About another 200 for which I cannot find a listing :-)

[mamamax]

Best Practice - Youtube Page (http://www.youtube.com/user/BibiDocWeiss)

[mamamax]

I was reviewing this thread this evening ... trying to figure out what happened that would cause such an uproar in responses, verging too closely upon what could be viewed as character assassination of one of recent history's most important people in the world of scoliosis rehabilitation.

After posting links to some videos on a Youtube channel created by Dr. Weiss, and commenting scary ... what next? The what next turned out to be an onslaught of Flying Monkeys. You know, the evil witch's minions from the Wizard of Oz. No matter that my use of the word scary was slang, for a big wow - look at this! I think I shall use less slang in the future. I tried to recover with a light hearted film festival review - and failed horribly ... the monkeys kept flying. My first and last film festival review, will leave that to the professionals in the future. Why would so much come into question, on a personal level which included even his equestrian abilities - without any talk of the literature? Good question. I have no answer.

The Internet providing a fairly transparent world, Dr. Weiss got wind of our conversation and posted a response to us on Youtube. The verbiage found Here!. We were introduced to, and invited - to do mirror work. This may be a first in NSF forum history - though I can't say it is one to be necessarily proud of.

Reminded me of a similar time when the president of the National Scoliosis Foundation was attacked in forum and he responded with Setting The Record Straight (http://www.scoliosis.org/forum/showthread.php?t=8765). There are other moments it reminded me of also, but they are too numerous to mention here.

Forum member (and Schroth-mom) Susanna, stepped in to give us a Reality Check. It didn't seem to matter. The monkeys still flew.

The NSF forum postings turn up over and again in Google searches. Ever wonder how all this looks to those outside our inner circle - to the eyes watching around the world? At best I fear we look ignorant - at worst, like the people for whom the term Ugly American was coined. Ignorant bty, does not mean stupid, but rather implies a "not knowing."

Where do we go from here? I cannot speak collectively for the Flying Monkeys - but if I could, I would say ....




Please forgive us - we did not know what we were doing - and we did not understand from where the video Scoliosis Girls came, or how it was used. In truth we know little about Schroth. We were having a psychotic moment.

Our forum is un-moderated for the most part - and this is what will happen sometimes when there is no moderation among a large group of people. On one hand we enjoy a great deal of freedom - on the other, maybe sometimes such as this, such freedom is wasted in ignorance. We are not bad people - but we do sometimes behave badly.

What did we learn? I hope, a lot. Time will tell in the future threads to come.

Sincere apologies extended to Dr. Weiss, his patients, and his family.

[jrnyc]

just who are you calling a "flying monkey"???

no apology to Dr Weiss is needed...and certainly not wanted by many MANY folks on forum who find his videos anywhere from offensive to repulsive...

so don't apologize for me...i stick by what i say...and i DON'T have "psychotic moments"!!!

as far as "looking ignorant"...or "not knowing"...i am a licensed clinical social worker...i know inappropriate when i see it....seen it many times...and that video IS INAPPROPRIATE!!!

jess

[tonibunny]

Mamamax, I believe Hans Weiss didn't fully appreciate the cultural differences between Germany and the US/UK. They are a lot freer about their bodies in Continental Europe and in several countries can start sexual relationships very early on (if with someone of around the same age).

Braces are typically worn here by very young girls until they are deemed to have stopped growing, which is usually around two years after the onset of menses. For most girls this would be by the age of 16. It therefore appears to us that Hans Weiss, a guy in his 30s (in those videos), is singing about how young girls of 15 and below should feel sexy. In the US and UK, that's really not acceptable. I don't know about the US, but in the UK the "Age of Consent" is 16 and we view adults who consider younger girls to be sexy in a very dim light.

He even shows himself biting the leg of one young girl, and it is really very difficult for someone in the US or UK to understand why he would do that. It's a very sexual image, but again, he's in his 30s and the girl is very young. Naturally to US or UK eyes, that appears "creepy". Maybe in Germany adult men go around biting the legs of young girls all the time though? It is difficult for me to get my head around, and I am at a loss. I don't think that image is acceptable at all and to my English eyes it makes him look like a sexual predator because it appears that he finds such young girls in braces sexy.

I'm sure that he made the videos with good intentions, but I think that Hans Weiss made a great error of judgement in making them available to the entire world, and that the reaction he got was natural and completely unsurprising, especially given that a lot of people here are the parents of young girls.

[mamamax]

jrnyc - If I have to point out the Flying Monkeys ... then my message is lost.



tonibuny - Maybe Hans did not appreciate the cultural differences. If so, then something has been learned. Seems we are all constantly learning new things. If we are not learning, then maybe we are not living. Errors in judgment can be the best teachers - I don't know anyone who has never made an error, especially when trying new things.

Speaking of cultural differences, I correspond with a woman in Germany who is in her 20's and bracing under the guidance of someone taught by Dr. Weiss. So maybe bracing in Germany is not always halted at skeletal maturity. Her results have been amazing. It is possible we have much to learn from Dr. Weiss, that would be to our benefit.

The movie was done more as a spoof - than as some serious cultural message. The Schroth-mom upthread - no doubt her comments have been echoed around the world. So in context of the Clinic, and its setting ... it was no more than a upbeat motivational tool. This video does not a Roman Polanski make. I think it is a pity that it has been largely misunderstood and completely blown out of proportion. Truth is, one can see it from many perspectives - the choice is individual.

I agree with you, I am sure the videos were made with good intentions. I would go further and say they are innocent in the context from where they came.

I've been thinking about Dr. Weiss .... what a high energy man this must be. Looking at the publishing of books etc., that he has done - the clinical hours and research - private practice - a family to take care of .... and .... artistic talent which borders on the high end of amateur, oh - and yes, the equestrian thing. Pretty amazing. How does he find time for all this? Well, I guess, he makes the time - just another admirable attribute.

False accusation - is an evil thing. The evidence here his highly circumstantial. Let us not falsely accuse this man .... he, and his family - have given more to this world in the area of scoliosis rehabilitation than any in the history prior to the last three generations. The contributions serve both those seeking to improve the quality of their lives, as well as those for whom surgery has failed (in certain circumstances where pain remains an issue).

A few nights ago, I cleared my head of all this chatter ... and watched Scoliosis Girls from the perspective of a patient in the Clinic. I would have come to this clinic looking for a way to become more normal. At age 11 when I was diagnosed, by age 12 I had accepted that there was something wrong with me, I was different (in my mind), and not as good as my peers. From this perspective, the video made me smile, and even laugh - and for a moment, my deformity meant nothing, and carried no sadness. That is the message of this video - for those watching with a clear head.

In the end - all the false accusation has been - Much to do about: nothing. Judgment of wrong doing has been made in haste, and the judgment is faulty. And when a man (or woman) has been falsely accused - apology is due, as it is in this case - to both the man, his patients, and his family.

[jrnyc]

your message is lost because of how wrong and misguided it is...i know quite well who your flying monkeys are SUPPOSED to be...but i ain't a flying monkey, and neither are the others who find your doctor's videos disgustingly wrong!

i think thee dost protest too much!! and at such length! on..and on....and on...and on...and on...and on...if anyone wanted to look up your dr weiss, they could do it without your misguided help.

jess

[tonibunny]

Serious errors of judgement are not something I want to see my doctor making though, especially not in public :)

I found the videos amusing and also shocking; I couldn't believe he'd shot himself in the foot so massively. He certainly has a talent for writing a catchy hook, but music, horseriding and other activities like that don't make him a better medical doctor. Do I think he's any kind of pervert? Absolutely not. Do I think he's given the impression that he's quite dodgy because he's an adult who sings about young girls in braces being sexy and bites the leg of one of them? Yes, obviously he has. It's understandable that people here are quite outraged by that, and that some will think he's a pervert.

He's been a bit dim, but I'm sure he'll have learnt from this. I've dealt with him before and he comes across as a decent, committed individual - whatever I think of his methods.

[jrnyc]

"we are not bad people...but sometimes behave badly"!! is that how you try to excuse dr weiss...?

those who have such a distaste in their mouths at viewing dr weiss' videos are not bad people and are not doing bad things...they are speaking out about what is wrong!

a "brace" is NOT a "lover"...and that foot biting thing???!!!.....
my husband is a musician...he laughed when mamamax called weiss "talented", "genius", and when she referred to what he can do as "music"!!

jess

[mamamax]

"we are not bad people...but sometimes behave badly"!! is that how you try to excuse dr weiss...?

those who have such a distaste in their mouths at viewing dr weiss' videos are not bad people and are not doing bad things...they are speaking out about what is wrong!

a "brace" is NOT a "lover"...and that foot biting thing???!!!.....
my husband is a musician...he laughed when mamamax called weiss "talented", "genius", and when she referred to what he can do as "music"!!

jess

Defamation of character is bad behavior by any standard.

I suggest you Google it in regards to on line postings.

You know Jess - I'm not interested in exchanging insults with you.

If you don't like what I post, you are invited not to read and not respond.

[mamamax]

Serious errors of judgement are not something I want to see my doctor making though, especially not in public :)

Agree with that Toni. To my knowledge, Dr. Weiss has not made serious errors of judgment in regards to his patients. If he had, seems like we would have heard about that by now.


I found the videos amusing and also shocking; I couldn't believe he'd shot himself in the foot so massively. He certainly has a talent for writing a catchy hook, but music, horseriding and other activities like that don't make him a better medical doctor. Do I think he's any kind of pervert? Absolutely not. Do I think he's given the impression that he's quite dodgy because he's an adult who sings about young girls in braces being sexy and bites the leg of one of them? Yes, obviously he has. It's understandable that people here are quite outraged by that, and that some will think he's a pervert.

He's been a bit dim, but I'm sure he'll have learnt from this. I've dealt with him before and he comes across as a decent, committed individual - whatever I think of his methods.

Now you see? This is a reason-based response, void of character assassination. That's what I like about you Toni - your take on things is often like a breath of fresh air. I don't know why it is so hard for some others to communicate more like this. Thank you for your level headed comments with a bit of British humor. Can we talk you into giving communication courses over here? :-)

[jrnyc]

and you are welcome to NOT read what I post as well!

are you now in charge of who reads what on this forum...must be news to Linda! have you informed her that you are now in charge?

you are the ONLY one hurling insults...names like "flying monkeys." and comments about the judgement of those on forum, rather than looking at your almighty doctor's judgement!

if you dont like what i post, then you dont have to read it...so ditto to you!

you are the one seeing insults...you are taking on dr weiss as yourself, for some reason...you have confused criticism of his lack of professional behavior and bad judgement as criticism of you...

you post his supposed "writings" that he may have participated in as if we need to see some kind of proof of something...again i will say...someone doth protest too much!!

jess

[mamamax]

and you are welcome to NOT read what I post as well!

are you now in charge of who reads what on this forum...must be news to Linda! have you informed her that you are now in charge?

you are the ONLY one hurling insults...names like "flying monkeys." and comments about the judgement of those on forum, rather than looking at your almighty doctor's judgement!

if you dont like what i post, then you dont have to read it...so ditto to you!

you are the one seeing insults...you are taking on dr weiss as yourself, for some reason...you have confused criticism of his lack of professional behavior and bad judgement as criticism of you...

you post his supposed "writings" that he may have participated in as if we need to see some kind of proof of something...again i will say...someone doth protest too much!!

jess

Actually the thought regarding ignoring posts that bother - came from Pooka1 .. excellent idea.

Again I can only say ... literacy is woefully lacking - far more so than the literature. How odd!

[jrnyc]

oh, i think we all know who the "odd" ones on here are...


jess

[mamamax]

oh, i think we all know who the "odd" ones on here are...


jess

That's a fact :-) Good night Jess - God Bless.

[jrnyc]

that is what you do...insult people and then wish them phony "blessings"?

i dont want your fake blessings...and as a licensed clinical social worker, i know exactly who is odd on this thread...of course, we social workers use some other more clinical term for it, but that is good enough for now...if all you can do is throw the word "odd" back at me, your "brilliance" must be slipping!

i am going to let your sick need to continuously defend your dear friend dr weiss...you are who you associate with, after all..go on and on without my attention...
i am finished with your constant need to justify, rationalize, excuse, and twist the truth...

so i wont waste my time with this anymore...you can keep trying to demonstrate your...DEEP, superior brilliance...:rolleyes: to others.

jess

[mamamax]

Jess if you don't like my postings - use the ignore feature - it works well .. use it myself from time to time. And may again use it soon ;-)

[mamamax]

To all Moms who are trashing Dr. Weiss' name.

My daughter has been his patient for 3 years. We visit him twice a year for her therapy and bracing. I know many girls from other countries who are his patients. Dr. Weiss never touched any of them inappropriately. We watched those videos and laughed because they were funny. And you, ladies, happen to lack a sense of humor.
Thanks to Dr. Weiss our children are getting well without having a surgery!
That is what you should be talking about.
We were in Germany last month and we witnessed doctors from all over the world visiting Dr. Weiss in order to learn his method. American doctors should follow them!

Dear Susanna - Just wanted to thank you again for posting. I am hoping that once the psychotic hoopla dies down over these innocent and highly misunderstood videos, that further discussion regarding Schroth and the Best Practice method may continue. You could help us learn much. The more I read about this work - the more (as a patient) I feel a good method has been withheld from this side of the hemisphere :-) Truthfully, Schroth could have been introduced prior to the year of my birth (1949) if the technology of today had existed then. It sounds like your daughter has been helped much - congratulations & may the road ahead be one of continued success.

[Lorraine 1966]

I just came back to NSF after quite a while. What do I find, yep got it in one. If any one makes a comment Mamamax you just have to go on and on and on.,

Ever since you joined NSF it has been the same. I think it has become your new hobby, no wonder so many people I see aren't here any more. I am not being nasty either just stating a sad fact. This used to be such an encouragement to everyone, but now it has you all over it with your NEVER EVER WRONG ideas.

You have nasty shots at Linda who is a sweety and tried to help me and who I certainly dont' have to defend.
If you cannot see that those videos are offensive, I pity you.

Please let this forum get back to what all of us want it to be. For it to be an encouragement to the young, for it to be a place for people in pain to turn to and be understood, for the young to read and understand what the past held and what the future now holds for them as far as hearing it from people who are being operated on etc. For adults like myself to read about other people in the same predicament. This thread is or was a really worth while one, by that I mean the name of, it but it has as usual been turned into campaign poster for you.

If we don't know your opinion of everything by now we never will, now please ease off and let this get back to what it used to be. I would suggest you read all yours posts mamamax and you may even agree with me.
Jess I get you honey I really do.

Lorraine.
Lorraine.

[mamamax]

I just came back to NSF after quite a while. What do I find, yep got it in one. If any one makes a comment Mamamax you just have to go on and on and on.,

Ever since you joined NSF it has been the same. I think it has become your new hobby, no wonder so many people I see aren't here any more. I am not being nasty either just stating a sad fact. This used to be such an encouragement to everyone, but now it has you all over it with your NEVER EVER WRONG ideas.

You have nasty shots at Linda who is a sweety and tried to help me and who I certainly dont' have to defend.
If you cannot see that those videos are offensive, I pity you.

Please let this forum get back to what all of us want it to be. For it to be an encouragement to the young, for it to be a place for people in pain to turn to and be understood, for the young to read and understand what the past held and what the future now holds for them as far as hearing it from people who are being operated on etc. For adults like myself to read about other people in the same predicament. This thread is or was a really worth while one, by that I mean the name of, it but it has as usual been turned into campaign poster for you.

If we don't know your opinion of everything by now we never will, now please ease off and let this get back to what it used to be. I would suggest you read all yours posts mamamax and you may even agree with me.
Jess I get you honey I really do.

Lorraine.
Lorraine.

Dear Lorainne -

This forum was established for both surgical and non surgical patients, and parents of patients - that they may have a place to both support each other, and learn new things. Before I joined this forum, I spent quite some time reading what others had to say. The changes you speak of came about long before I joined. And the changes involved more non-surgical participation - which the surgical crowd seems not happy with. It is unfair to blame me for a growing population of those seeking non-surgical methods.

One rarely sees a member who is seeking non-surgical methods, over in the surgical threads challenging the exchange of information. I think there may have been a few exceptions to that - but such posters have been banned from forum. But consistently, over and again, in the non surgical threads there are some who feel it is both their right, and act as if it is their duty - to challenge every exchange of non-surgical information that is posted. When this happens, and the response is not to sit down and shut up .... then the accusations fly of "making trouble." This has been going on for many years before I joined this forum, is a matter of record, and is available to anyone who wishes to look for it.

I too have seen people leave - or discontinue posting, but it is not because of me - but rather, because of the continued assault against all things non-surgical - unless of course, the method fits into the current mold of standard medical practice. The best examples of this can be found in threads where people have tried to share information regarding Schroth, Spincor, and newer bracing methods not yet in the medical mainstream.

It is not my style to go out of my way to exchange insults with others - however when insulted, I have stood my ground - and tried to respond in a reasonable manner ... In other words, I do not shut up and sit down. That is the only "problem" with me.

Researching things that may improve the quality of my life is not my hobby Lorainne - it is my life, and it will continue to be my life in the years ahead.

You say to me: Please let this forum get back to what all of us want it to be. Who is "us" .... the surgical part of the forum? I would say this - there is another part of the forum - the non surgical section. And I implore others to let it exist without undue assault - that we may also have a place for support. Again - we do not see those from the non surgical section assaulting the surgical section on a routine basis. We do see those from the surgical section assaulting the non-surgical section on a routine basis. And again, this has been going on long before I became a member.

Conflict is uncomfortable for all. I am not the source of the conflict. I do have a great need to learn about that which may improve the quality of my life in the years to come. And it is not in my nature to shut up and sit down when told to do so in so many words. I cannot apologize for that.

Those who do not like what I have to say - well, that is why the Ignore Feature was invented ... ignore me - that should solve the "problem." But please do not ask me to sit down and shut up - I have too much to learn about how to improve the quality of my life in the future and I hope those like me, who have left the forum because it is too difficult to do so amid the conflict - will eventually come back that we may help each other through this process.

Sincerely - Maxene

p.s. Please do not pity me because I do not see exactly as you see, no more than I pity those who cannot see beneath the surface of some things. But rather - let us seek and find the relief we all need.

[Lorraine 1966]

Discussion about non surgical is good. Pushing your thoughts down other peoples throats is not good, its the way you say it. Look, I am not being nasty, but nearly every time you come in and there is always an unsavoury flavor in what you say. Surgical crowd and non surgery crowd (your words), you seem to have a real problem and have blown this up in your mind like it is us against them and you are wrong.

There is a discussion at the moment with a young man called Christian who is absolutely wonderful, has a terrific sense of his own body and has been doing exercises and is so excited about it. There is no one on there giving him a hard time, it is a wonderful thread. He is receiving encouragement and it is an absolute joy, this is what I am talking about. Now that I have told you about it please, please don't hi jack it and start this all over again.

Everyone is passionate about what we feel, but it is wrong to push our thoughts onto other people even if we are 100% sure that we are correct. I know you think that you are right about everything you post, but please just tone it down a little and realise that our young people are reading all this as well. Please just support what people are thinking of doing, it is after all there choice whether it is your choice, it doesn't matter, my way either it doesn't matter, just discuss with them and listen to them not write verbatim things that were found out years ago.,

I know you know darn well what I am talking about so I am not going to say a lot more. But lets just make this forum a pleasure for everyone from all over the world, to come to and talk about their scoliosis problems.

Lorraine.

[mamamax]

I am stunned that anyone who has never met me personally - would presume to think they know everything about me, judge me so harshly - and seemingly with such authority! Thank you for your comments - they have given me cause to pause and rethink a few things. I knew you when you were Macky - and you are a compassionate soul ... but I also think your judgment of me is not - entirely accurate. However, your thoughts (and I mean this sincerely,) do serve to remind me that maybe my message is not clear.

Background: When I first joined here I came on the scene all anxious to share my Spinecor experience. I was pounced on Loraine, and I know you remember this. Shortly after, a young professional ice skater came on the scene to share her story - her character was completely assassinated. And I know you remember that. During that time, and before that time, others were also having trouble sharing their experiences and this in part, moved Joe O'Brien (President and CEO of NSF) to publish Setting the Record Straight in order to, well, set the record straight on many things - including forum rules of behavior. There is another post here somewhere - in which someone else trying to share a non surgical experience comments on how the forum should just be given back to the surgical crowd - since they tend to insist upon dictating how others should think and write. Now I did not create these things, these things have existed for a long time before me - but I do acknowledge that they have existed, and in some circumstances, still exist. Maybe all the conflict has been good in a way, and maybe it has served to change the way some people think - allowing the new member you speak of to join the community without undue criticism. If so, then that is very good, and maybe even worth the heartache others have had to endure.

If others, like yourself, have seen my postings as pushing information down their throats, I am sorry that they have seen it that way - but truthfully, I cannot control the way others see. I can say - such, was never my intention, and my heart has always been in the right place. That place is one of deep compassion for what we all have to deal with on a daily basis, and for what we may have to deal with in the future to come. I will try to better polish my writing skills (or lack thereof) in the future to better convey that message.

Here's what I support - for the record, and let me make myself perfectly clear ... I support the choices anyone makes in regards to their medical treatment, or the choices made in the treatment for their children - 100% - Why? Because it is their choice, made on what they know in their hearts is best either for themselves, or their children. I hope that is clear.

[mamamax]

What do we think? I don't want to shadow this information too much with my own thoughts other than to say - I think it would be wonderful to find this available in our Physical Therapy departments - and covered by insurance. Other thoughts?


Scoliosis Intensive Rehabilitation


Rehabilitation employs an individualized exercise program combining corrective behavioural patterns with physiotherapeutic methods, following principles described by Lehnert-Schroth (2000) and Weiss (Weiss 2007a, Weiss and Maier-Hennes 2008). The three-dimensional scoliosis treatment is based on sensomotor and kinesthetic principles and its goals are like the goals of out-patient treatment:



1. to facilitate correction of the asymmetric posture, and
2. to teach the patient to maintain the corrected posture in daily activities (Weiss and Maier-Hennes 2008)


The treatment program consists of correction of the scoliotic posture with the help of proprioceptive and exteroceptive stimulation. Central to the individual and group exercise programs is therapist assistance (Figure 1), who supervise all exercises and provide exteroceptive stimulation needed to obtain the desired corrections. Depending on individual curve patterns, the patients are assigned to special exercise subgroups making the program for the individualised to suit the patient's needs (Figure 2). Development and maintenance of the corrected posture is facilitated using asymmetric standing exercises designed to employ targeted traction to restore torso balance and mobility.

The "Best Practice" rehabilitation program uses a certain methodology in order to address all clinical aspects of the patient's deformity:



* physio-logic® exercises (correcting the sagittal profile, Weiss and Klein 2006)
* 3D made easy® exercises (3D program easy to acquire for small curves, Weiss, Hollaender and Klein 2006)
* Pattern specific activities of daily living (specific ADL, Weiss and Hennes 2008) and
* Schroth exercises (Lehnert Schroth 2000)


The bigger the curve, the more the Schroth exercises are performed because this method of treatment is most effective in curvatures of more than 30° (Weiss et al. 1997). On the other hand curvatures between 15 and 25° do not necessarily need the Schroth program, which is rather complex and not very easy to learn, when there are other specific approaches available, which are easier to learn and already have been tested in the environment of an in-patient rehabilitation centre (Weiss and Klein 2006, Weiss, Hollaender and Klein 2006).

The primary goal of specific rehabilitation is for patients to be able to assume their personal corrected postural stereotype, independent of the therapist and without mirror control, and to maintain this position in their daily activities. Recommended at-home follow-up treatment includes three to four exercises for 30 minutes daily in order to maintain the improved postural balance. Therapists throughout Germany, Spain, Austria, Switzerland, United States, Turkey and Israel have received training in the Schroth approaches so that local out-patient resources are available. In cases of reported pain, curvature progression, or pulmonary symptom development repeat intensive rehabilitation treatment is available by referral from primary care physicians, paediatricians and orthopaedic specialists (Weiss et al. 2003, 2003, Weiss 2003).


Full Text Article (Weiss, Goodal, 2010) available in English, Spanish & French:

http://cirrie.buffalo.edu/encyclopedia/article.php?id=49&language=e#s4

[Lorraine 1966]

Ok, we shall leave it at that. I have said my little piece. Just wondering, how did you go with spinecor?
Honestly too, I think back to when I was 15 and how unbelievably bad my kyphosis/scoliosis/lumbar the whole bit was and believe me it was a horror and I know that exercises could not have helped me. My body was a twisted wreck. My ribs were around near my right side, I had a huge hump. which I still have but not really that big now. I had trouble breathing because of the pressure on my lungs and my heart was in trouble.
I do think that Schroth could help people with a much smaller curve , but I would have to see a study done say 10 years in the future to see if the curvatures stayed stable. Just to see if all the effort these people were putting in had been worth it. I know Schroth has been around for a while but I have not seen any written study by people such as myself for instance who can write about the effects of my operation, years and years in the future and even though it was done in the dark ages it hasn't been all that bad, until I was almost 50 and that was a good innings.


Lorraine.

[Pooka1]

Weiss HR, Goodall D. 2009. Is Scoliosis In-patient rehabilitation clinically effective? A systematic Pub Med review. Paper presented at the 6th annual meeting of the SOSORT, May 20th-23rd, Lyon 2009


Schroth has been around since 1921 and Weiss is asking in 2009 if it is effective.

I guess the world, including Weiss, is still waiting on that answer.

I realize demonstrating the effectiveness of PT is a tall order but if 88 years isn't sufficient time and given the 10,000+ patients then I wonder if it can be demonstrated.

[Lorraine 1966]

That Sharon is my answer, thank you. That, was what I was getting at.

Lorraine

[skevimc]

What do we think? I don't want to shadow this information too much with my own thoughts other than to say - I think it would be wonderful to find this available in our Physical Therapy departments - and covered by insurance. Other thoughts?


Scoliosis Intensive Rehabilitation


...snip


The problem I have with this is that Weiss does not seem to be applying the same critiques of other studies to his own. He is pretty harsh on Negrini and the SEAS approach with one critique being that the studies lack any type of control group (I skimmed, but I think I'm reading that correctly). However, the main study he cites won an award for best clinical paper at SOSORT in 2008. I am not aware of any controlled trial using Schroth. As well he cites an RCT in China that evidently had good results (didn't present them) and good level of evidence (level Ib) but he criticized it because it lacked specific descriptions of exercises.....

Oddly, his introduction says that the medical literature dismisses exercise as an option. But then he doesn't do a good job of presenting the convincing evidence.

I don't know... Lots of Weiss references and details and, unfortunately, not much else. Now, I think Schroth has validity based on proposed physiology, but I doubt this posted article would make it past the peer review process.

[hdugger]

Yeah, that's been my take on his stuff as well. He clearly has some idea of what it takes to do decent research, but . . . for some reason, he doesn't pull it together.

The SEAS paper I read (the one with the adult patients) didn't really *need* a control group, because it showed a reduction in the some of the curves. Since that doesn't ever happen in the natural course of the disease, the natural course of the disease would seem to serve as the control.

[mamamax]

Ok, we shall leave it at that. I have said my little piece. Just wondering, how did you go with spinecor?
Honestly too, I think back to when I was 15 and how unbelievably bad my kyphosis/scoliosis/lumbar the whole bit was and believe me it was a horror and I know that exercises could not have helped me. My body was a twisted wreck. My ribs were around near my right side, I had a huge hump. which I still have but not really that big now. I had trouble breathing because of the pressure on my lungs and my heart was in trouble.
I do think that Schroth could help people with a much smaller curve , but I would have to see a study done say 10 years in the future to see if the curvatures stayed stable. Just to see if all the effort these people were putting in had been worth it. I know Schroth has been around for a while but I have not seen any written study by people such as myself for instance who can write about the effects of my operation, years and years in the future and even though it was done in the dark ages it hasn't been all that bad, until I was almost 50 and that was a good innings.


Lorraine.

10-4 Lorraine :-) Thanks for asking about the bracing - it did what it was supposed to do - rehab wise, and brought me through the worst of times with my own condition - now I am looking for more! As for more info on Schroth outside of published studies - there are many books, these may show more. I'm waiting for a copy now of The Best Practice Method - will comment on that after reading. Your thoughts on available literature have been echoed even in the literature itself, with such comments as: the literature is woefully lacking - in all areas. I agree, and am waiting with you :-)

[mamamax]

Schroth has been around since 1921 and Weiss is asking in 2009 if it is effective.

Is this not the language of the literature itself? Even the surgical community asks these questions in their literature regarding effectiveness - common practice to ask if a method is working in order to refine it - I think.


I guess the world, including Weiss, is still waiting on that answer.

I realize demonstrating the effectiveness of PT is a tall order but if 88 years isn't sufficient time and given the 10,000+ patients then I wonder if it can be demonstrated.

Possibly other countries are picking up on this ahead of the US. I noticed a listing of countries within the paper, where this method has found acceptance - the US is preceded by: Germany, Spain, Austria, and Switzerland. Presuming the listing has some significance. As to why it has not been adopted over here - well, the reasons may have nothing to do with the effectiveness of the treatment - it is not easy to implement new things into our current medical system.

[Pooka1]

Yeah, that's been my take on his stuff as well. He clearly has some idea of what it takes to do decent research, but . . . for some reason, he doesn't pull it together.

I can suggest a reason...


The SEAS paper I read (the one with the adult patients) didn't really *need* a control group, because it showed a reduction in the some of the curves. Since that doesn't ever happen in the natural course of the disease, the natural course of the disease would seem to serve as the control.

But the reductions are exquisitely rare (one patient?) and there is zero evidence that is permanent. What if the patient can't exercise for a period of time? And if the main claim is to halt progression then we have a few cases of even large curves halting on their own just in this cozy little sandbox. So they need a control group because the main claim is likely that they halt progression, not reduce curves.

[Pooka1]

As to why it has not been adopted over here - well, the reasons may have nothing to do with the effectiveness of the treatment - it is not easy to implement new things into our current medical system.

It would be a piece of cake to implement it if it worked to permanently keep people from needing surgery. It would implement itself.

[Pooka1]

Is this not the language of the literature itself?

No.

.

.

.

[mamamax]

Schroth has been around since 1921 and Weiss is asking in 2009 if it is effective.

I guess the world, including Weiss, is still waiting on that answer.


Sorry I wasn't really awake this morning when I answered this - rushed through my posting on the way to work. You bring up some interesting sidebars.

Yes Schroth has been around since 1921 (89 years, two generations & counting). The question referenced in your first comment above, is a title from a previous work by Weiss: Is Scoliosis In-patient rehabilitation clinically effective? Found Here. (http://www.scoliosisjournal.com/content/4/S2/O32) Which is referenced in the topic of our discussion (Scoliosis Intensive Rehabilitation, Weiss & Goodall 2010). I got your joke (funny), but the fact of the matter is, this is a brief oral presentation which centers around the question of in-patient scoliosis rehabilitation, its assessment in a prospective controlled study - and the exploration into its effectiveness compared to a significantly reduced time period vs the average of 6 weeks. Resulting in the conclusion that there is no evidence (in the literature) supporting in-patient rehabilitation in terms of health related issues and that a two week program can be sufficient. Further highlighting the cost effective advantages. This serves as good reference for someone wanting to make a case for scoliosis rehabilitation in hospital affiliated physical therapy departments :-) Thanks for highlighting it!

Now I'm just a lay patient, and no rocket scientist - but personally I like literature that asks these kinds of questions towards refining such things as scoliosis rehabilitation.

I imagine such questions are asked in the surgical literature as well - if not in those exact words, the questions may be in mind during the literature design stage. Otherwise we would not find the reported progress in instrumentation and methods, and nothing would change.

So as a patient - the more questions asked in the literature, the better for me (and others), as we look for answers. For example (and not to start a raging debate, I'm truly curious as a patient): the first surgery for scoliosis correction was done in 1865 (French surgeon, Jules Guerin). So we have a surgical history of 145 years, and literature to go with. Yet there is nothing in the literature that states surgery halts deterioration 10 years post operatively (by either old or new methods and instrumentation). Well none that I can find anyway, and admittedly I have not read all the literature. You read much more - does this exist in the literature?

[Pooka1]

So as a patient - the more questions asked in the literature, the better for me (and others), as we look for answers. For example (and not to start a raging debate, I'm truly curious as a patient): the first surgery for scoliosis correction was done in 1865 (French surgeon, Jules Guerin). So we have a surgical history of 145 years, and literature to go with. Yet there is nothing in the literature that states surgery halts deterioration 10 years post operatively (by either old or new methods and instrumentation). Well none that I can find anyway, and admittedly I have not read all the literature. You read much more - does this exist in the literature?[/COLOR]

I think there is data on H rods in the out years or past 10 years anyway. The T fusions are sailing along years out as a generality as far as I know though there are of course exceptions. Not so true for L fusions unfortunately.

I think H rods for T curves are a "solution" at this point to progression but Linda will correct me if that is not a good description of the state of affairs. And pedicle screws improve on H rods so I expect those are "solutions" for T curve also.

Not sure about the state of the art w.r.t. L curves. Hopefully pedicle screws will "solve" the problems seen with H rods.

[mamamax]

Schroth has been around since 1921 and Weiss is asking in 2009 if it is effective.

I guess the world, including Weiss, is still waiting on that answer.

I realize demonstrating the effectiveness of PT is a tall order but if 88 years isn't sufficient time and given the 10,000+ patients then I wonder if it can be demonstrated.

Yes, demonstrating effectiveness, is a tall order. While the method has been "around" since 1921 - the historical context shows: that it began (in generation one) with Katharina Schroth, who was a lay patient like myself (well maybe more than a few notches above me actually). She was not a scientist. But she did have a scientific and artistic mind - and she did become a physical therapist and developed this method rather single handedly (impressive). So in generation one, we find the method is born and implemented in Germany where it finds respectful acceptance - but not by a scientist producing scientific papers which would add to the literature.

Generation two, continues with her daughter Christa - who continues the clinic, and treatment of patients based upon the work of her mother. Again we do not find a scientist who contributes to the western literature. Her son Hans, near grows up in the clinic while efforts are made to expand its operations.

Generation three finds Christa's son Hans - who does become an orthopedic surgeon, continues the work of the clinic and treating patients - and finally Schroth finds scientific contribution to the literature - along with an updated method (based on the old) which offers out-patient scoliosis rehabilitation. His first published study on that will be available in a few months - I'll be sure to post a link when it is available.

So, we only have this contribution to the literature since roughly 1991 - or 19 years. Within this time span we do find one clinic established in the United States (Wisconsin). That was fast! The contribution towards out-patient rehabilitation, is just beginning. Not a lot of time for one man to contribute all that needs to be contributed in order to effect a major change in western medical methods, though he may be one of the literature's most prolific authors. It's a fascinating history really, I would love to read a book about it - actually, I'd like to write one :-)

Where are all the case studies? I wonder if the case studies that were done from 1921 to roughly 1990, which were not documented by scientists - were not done to code (so to speak), or not done in such a manner as to be literature worthy. I don't know, just a thought.

I don't know how many case studies have been scientifically constructed and published - but your question makes me want to find out. Certainly there are many which I believe are not yet even translated and which exist in German journals. And some may exist in the 13 books Hans has written. To my knowledge, only one of those books is in English - The Best Practice Method. I'm actually waiting for a copy of that to arrive & will share the information in it after reading. I wouldn't mind having a copy in German as well - so as to learn German that way. One of my off forum German friends (a Schroth patient) learned English by reading Harry Potter - kind of cool ... I wonder if I still have it in me to attempt such things.

Anyway - hope this helps answer the question of why things take so long. Overall, I think it can be said that implementing new methods into an established medical system - takes time, and is a rather slow process. Had the technology of today, existed in 1921 ... this could quite possibly be a much different story, in this part of the world. Certainly the method is well established in Germany.

[Pooka1]

Certainly the method is well established in Germany.


A poster from Europe said it is still fringe even in Germany.

And why are fusions still occurring if there is an effective non-surgical treatment?

And why hasn't Weiss won the Nobel in physiology or medicine?

[mamamax]

A poster from Europe said it is still fringe even in Germany.

And why are fusions still occurring if there is an effective non-surgical treatment?

And why hasn't Weiss won the Nobel in physiology or medicine?

Well maybe the definition of well established would mean - many patients there seek out this method which certainly has been accepted by patients - and by the medical professionals there who write what we would call prescriptions (referrals I think they call it there). At one time (I do not know about now) treatment was covered by insurance - according to my brother's German pal. But posters and pals are not the best sources of information - patients and parents are better. Over in the German forum, is found such things. I imagine fusions are still done for many reasons. I don't look at this from the perspective of which method is better - but rather from the perspective of choice - or at least having a choice in patient care. As to why Weiss has not won the Nobel - that takes lots of referrals ... quite a bit of politics involved actually, among other things - including time. If Gore can win one - hey, there's hope :-) Actually - choosing a treatment method (in my world), doesn't require that the provider win a Nobel. Boy - you ask a lot of questions on re-direct! It's ok - It's all good :-)

[mamamax]

So as a patient - the more questions asked in the literature, the better for me (and others), as we look for answers. For example (and not to start a raging debate, I'm truly curious as a patient): the first surgery for scoliosis correction was done in 1865 (French surgeon, Jules Guerin). So we have a surgical history of 145 years, and literature to go with. Yet there is nothing in the literature that states surgery halts deterioration 10 years post operatively (by either old or new methods and instrumentation). Well none that I can find anyway, and admittedly I have not read all the literature. You read much more - does this exist in the literature?

If anyone has a reference to the literature which states that surgery (by any method or instrumentation) halts deterioration 10 years post operatively - will you please post it? As a patient, I would very much like to read it.

[Lorraine 1966]

Well Mamamax, surgery halted any deterioration as far as scoliosis goes for 44 years with me. Is this what you mean?

[tonibunny]

Same here, I had my first rod (which was a Harrington) put in 24 years ago and my thoracic curve - a very progressive infantile one - hasn't moved an inch since :) Likewise, I had the fusion extended 16 years ago and my lumbar curve hasn't budged either. I would bet money on them never, ever deteriorating in my lifetime.

If you're talking about disc degeneration underneath the fusion though, of course that does happen (I had my fusion extended again because my L3-L4 disc wore out) but then, unfused adult friends of mine with large curvatures have also had disc degeneration due to the uneven loads on their vertebrae. It's the pain that this causes which leads them to have surgery too, rather than wanting to stop their curve from progressing or gaining cosmetic correction (before they had the pain, these things weren't an issue for them).

I'd be very surprised if there weren't any papers that have followed people up longterm though! I would assume though, that papers tend to be written about those patients who develop problems, because doctors can learn from them.

[Pooka1]

I'd be very surprised if there weren't any papers that have followed people up longterm though! I would assume though, that papers tend to be written about those patients who develop problems, because doctors can learn from them.

I think Linda will post if she has some citations.

I think Linda has confirmed that most T fusions, even with H rods, stabilize the spine long term. No conservative treatment can touch that or come close. T fusions are "one-stop shopping" surgery for life or at least that is the open claim. Long fusions into the lumbar and only fusing the T cure in double majors of course are completely different issues.

The open surgery question is L curves but non-surgical treatments purveyors have been trying for far longer than surgeons to solve that. The best hope is pedicle screws at the moment it seems not only to stabilize the curve but hopefully prevent adjacent level disease in these patients.

Let's see if Linda comments.

[tonibunny]

It would be wonderful if pedicle screws help prevent adjacent disc disease. I'm not banking on it, so it will be fab if that's the case. I'm very much expecting my L4-L5 disc to go at some point, but hopefully I'll have plenty of good years to enjoy it beforehand. I'm very active and climb mountains, cycle, and hike for hours through rough and rolling countryside :) I'm not scared of having the fusion extended again though; being fused really doesn't restrict you as much as people think it will and I doubt it would make much difference to me. Having the fusion taken down to L4 didn't make any difference whatsoever. I just look at TiEd for inspiration :D

[Pooka1]

Yes. I understand what you are all saying, and they are good points.

As a patient seeking to make a choice that is best for me ... I would like read some literature which states that surgery (by any method or instrumentation) halts deterioration 10 years post operatively.

This would eliminate much worry over future pain and revision - a good worry to eliminate at any age :-) Patient testimonials are good - literature is what I'm seeking - specifically, as stated above.

You have a TL curve with deterioration and pain, yes? I would be shocked if patients like you haven't been documented in the literature.

Of course the TL aspect seems like an open question long term irrespective treatment modality. Pedicle screws seem like the best hope as far as I can tell. Hopefully Linda will comment.

[mamamax]

You have a TL curve with deterioration and pain, yes? I would be shocked if patients like you haven't been documented in the literature.

Of course the TL aspect seems like an open question long term irrespective treatment modality. Pedicle screws seem like the best hope as far as I can tell. Hopefully Linda will comment.

Well then the literature surely must exist - I would like to read it. Any references yet?

[Pooka1]

It would be wonderful if pedicle screws help prevent adjacent disc disease. I'm not banking on it, so it will be fab if that's the case. I'm very much expecting my L4-L5 disc to go at some point, but hopefully I'll have plenty of good years to enjoy it beforehand. I'm very active and climb mountains, cycle, and hike for hours through rough and rolling countryside :) I'm not scared of having the fusion extended though; being fused really doesn't restrict you as much as people think it will and I doubt it would make much difference to me. I just look at TiEd for inspiration :D

Yes it is just a hope.

And I guess we have to include folks with long fusions to the pelvis as having their scoliosis "solved" in many if not most cases. Certainly no conservative treatment could have touched Ti Ed's case towards the end which is why he had the surgery.

[mamamax]

Yes. I understand what you are all saying, and they are good points.

As a patient seeking to make a choice that is best for me ... I would like read some literature which states that surgery (by any method or instrumentation) halts deterioration 10 years post operatively.

This would eliminate much worry over future pain and revision - a good worry to eliminate at any age :-) Patient testimonials are good - literature is what I'm seeking - specifically, as stated above.

[Pooka1]

Well then the literature surely must exist - I would like to read it. Any references yet?

Why don't you get 2-3 opinions from top surgeons and see what they say about cases like yours and about the literature?

[mamamax]

Why don't you get 2-3 opinions from top surgeons and see what they say about cases like yours and about the literature?

Actually Pooka1 ... I have had far more than 2-3 opinions from top surgeons .. I just do not advertise it.

I want to read the literature - and specifically in reference to the halting of deterioration 10 years post operatively, before making any final surgical decision.

We have an active scientific community here - maybe someone can find this.

[leahdragonfly]

Hi Mamamax,

I doubt anyone has much extra time to do a literature search for the type of articles you are interested in. But you can search to your heart's content on PubMed, and I bet you will find all sorts of interesting articles.

Your surgeons also might be able to point you towards some articles. Also most hopsitals have a friendly medical librarian who could help you find articles.

I wouldn't hold your breath for other forum participants to produce the articles you desire.

Regards,

[tonibunny]

Here you are, Mamamax :)

Radiologic Findings and Curve Progression 22 years after Treatment for Adolescent Idiopathic Scoliosis: a Comparison of Brace and Surgical Treatment with Matching Control Group of Straight Individuals
J. Danielsson, Aina MD, PhD; L. Nachemson, and Alf MD, PhD

in Spine, March 1st 2001, Vol 26 Issue 5 pp 516-525


Study Design. This study is a follow-up investigation for a consecutive series of patients with adolescent idiopathic scoliosis treated between 1968 and 1977. In this series, 156 patients underwent surgery with distraction and fusion using Harrington rods, and 127 were treated with brace.

Objectives. To determine the long-term outcome in terms of radiologic findings and curve progression at least 20 years after completion of the treatment.

Summary of Background Data. Radiologic appearance is important in comparing the outcome of different treatment options and in evaluating clinical results. Earlier studies have shown a slight increase of the Cobb angle in brace-treated patients with time, but not in fused patients.


[.....]

Results. The mean follow-up times were 23 years for surgically treated group and 22 years for brace-treated group. The deterioration of the curves was 3.5° for all the surgically treated curves and 7.9° for all the brace-treated curves (P < 0.001) [.....]

Conclusions. Although more than 20 years had passed since completion of the treatment, most of the curves did not increase. The surgical complication rate was low. Degenerative disc changes were more common in both patient groups than in the control group.



It is always expected that there will be a little bit of "settling" following surgery before the fusion has taken, usually of under 5 degrees, so a deterioration of 3.5 degrees is considered perfectly normal (any surgeon will tell you this before you have the surgery, you might like to ask your surgeon contacts about it). This study shows that after 22 years, the operated curves were basically stable.

[Ballet Mom]

You are a wonderful person tonibunny! The scoli world is fortunate to have you around! :)

[CHRIS WBS]

[QUOTE=mamamax; If Gore can win one - hey, there's hope :-) [/QUOTE]

Too funny.:D Don’t forget BO’s peace prize. That one beats Al Gore’s for lunacy.

[jrnyc]

even with my scoliosis, i cannot stoop low enough for that kind of name calling!
nice language...lovely respect for the office!

this is why some folks dont come on forum...or are on less and less!

J.

[mamamax]

Here you are, Mamamax :)



Radiologic Findings and Curve Progression 22 years after Treatment for Adolescent Idiopathic Scoliosis: a Comparison of Brace and Surgical Treatment with Matching Control Group of Straight Individuals
J. Danielsson, Aina MD, PhD; L. Nachemson, and Alf MD, PhD
in Spine, March 1st 2001, Vol 26 Issue 5 pp 516-525

Study Design. This study is a follow-up investigation for a consecutive series of patients with adolescent idiopathic scoliosis treated between 1968 and 1977. In this series, 156 patients underwent surgery with distraction and fusion using Harrington rods, and 127 were treated with brace.

Objectives. To determine the long-term outcome in terms of radiologic findings and curve progression at least 20 years after completion of the treatment.

Summary of Background Data. Radiologic appearance is important in comparing the outcome of different treatment options and in evaluating clinical results. Earlier studies have shown a slight increase of the Cobb angle in brace-treated patients with time, but not in fused patients.
[.....]
Results. The mean follow-up times were 23 years for surgically treated group and 22 years for brace-treated group. The deterioration of the curves was 3.5° for all the surgically treated curves and 7.9° for all the brace-treated curves (P < 0.001) [.....]

Conclusions. Although more than 20 years had passed since completion of the treatment, most of the curves did not increase. The surgical complication rate was low. Degenerative disc changes were more common in both patient groups than in the control group.

It is always expected that there will be a little bit of "settling" following surgery before the fusion has taken, usually of under 5 degrees, so a deterioration of 3.5 degrees is considered perfectly normal (any surgeon will tell you this before you have the surgery, you might like to ask your surgeon contacts about it). This study shows that after 22 years, the operated curves were basically stable.

Hi Toni :-) I know you research like me, late into the night - thank you for sharing this one. While the number of patients studied is quite small, and the methods are outdated by today's standards - I have to say this one does hold some very interesting observations.



Results. The mean follow-up times were 23 years for surgically treated group and 22 years for brace-treated group. The deterioration of the curves was 3.5° for all the surgically treated curves and 7.9° for all the brace-treated curves (PP < 0.001) [.....]

What is astounding is that 22 years post treatment - curves did not progress significantly, in either group! Now that is almost a pro bracing study :-) and x-rays don't lie. The only thing missing is an understanding of this patient population in terms of their risk of progression, prior to treatment. that would also be interesting to know.

This does demonstrate that curvature deterioration is near halted 22 years post operatively (using the old Harrington rod method), but does stop short of stating that the deterioration is unquestionably halted. I'm not sure how this is relevant to the newer instrumentation, other than that we would assume that newer instrumentation is better - we do not have the data on that yet - but certainly future data is forthcoming, hopefully in large study format.

There is the case to be made that one might assume from this study, that at the 10 year mark deterioration was halted, but it can't be proven - and I presume that is why the verbiage is not present.

What I'm looking for is something in the literature which states,literally, that surgery for scoliosis correction halts deterioration 10 years post operatively (not that the progression is minimal).

I have found this to be an exhausting search with no results. I think it does not exist. I don't expect anyone to burn the midnight oil trying to find this for me, but if you do - please share.

Thanks again Tonibunny, you do know how to find a good study and this one is quite unique in that it is rather positive from both surgical and non-surgical standpoints :)

[tonibunny]

Well, it's down to semantics isn't it. You say you want to see the word "halt". The writers of this study haven't used that word, but they have shown that yes, the progression of scoliosis was stopped by fusion surgery and that surgery was more effective than bracing.

Minimal "settling" of the fused spine is expected following a fusion surgery. Any surgeon will tell you this pre-operatively and one needs to be aware of this when considering these results. Besides, the "minimal progression" of 3.5 degrees over 23 years is well within the accepted +5/-5 degree margin of error when reading x-rays - in other words, it wouldn't usually even be considered to be progression! The bracing statistic, however, is larger than this and thus really does show that there's slight progression.

You asked for something that showed that fusion prevents deterioration of spinal curvatures after 10 years, and this study shows that. In fact, it shows that deterioration of spinal curvatures has been halted for over twice that long :) This is for the "first generation" of spinal instrumentation, if you like -obviously more modern hardware systems have been developed, but it is still data that is relevant for instrumented spinal fusion, no matter what sort of metalwork is used.

If you've decided, simply because this study doesn't use the word "halt", that this data is useless to you then that's up to you. It's your back! :) I do think you should have this discussion with a scoliosis surgeon, one who is a member of the SRS and thus has a lot of expertise; they will be able to tell you truthfully about how surgery can "halt" scoliosis. If you can't trust what they tell you then really surgery isn't for you anyway! To be honest, you seem happy to carry on with your nonsurgical treatments and I was surprised to hear you say you were considering surgery. Different things work for different people - just do what you're most comfortable with :)

[tonibunny]

If you need to hear the word "halt" then this may reassure you:

Social acceptability of treatments for adolescent idiopathic scoliosis: a cross-sectional study
by Stefano Negrini and Roberta Carabalona
in Scoliosis [the official journal of SOSORT], 24th August 2006


"....surgery halts progression, but fuses the spine"


This is SOSORT (who I think you probably have a lot of respect for) and they didn't feel the need to qualify their statement by giving X amount of years. They've stated that surgery halts progression but fuses the spine, full stop (er, period :D)

[mamamax]

Well, it's down to semantics isn't it. You say you want to see the word "halt". The writers of this study haven't used that word, but they have shown that yes, the progression of scoliosis was stopped by fusion surgery and that surgery was more effective than bracing.

Minimal "settling" of the fused spine is expected following a fusion surgery. Any surgeon will tell you this pre-operatively and one needs to be aware of this when considering these results. Besides, the "minimal progression" of 3.5 degrees over 23 years is well within the accepted +5/-5 degree margin of error when reading x-rays - in other words, it wouldn't usually even be considered to be progression! The bracing statistic, however, is larger than this and thus really does show that there's slight progression.

You asked for something that showed that fusion prevents deterioration of spinal curvatures after 10 years, and this study shows that. In fact, it shows that deterioration of spinal curvatures has been halted for over twice that long :) This is for the "first generation" of spinal instrumentation, if you like -obviously more modern hardware systems have been developed, but it is still data that is relevant for instrumented spinal fusion, no matter what sort of metalwork is used.

If you've decided, simply because this study doesn't use the word "halt", that this data is useless to you then that's up to you. It's your back! :) I do think you should have this discussion with a scoliosis surgeon, one who is a member of the SRS and thus has a lot of expertise; they will be able to tell you truthfully about how surgery can "halt" scoliosis. If you can't trust what they tell you then really surgery isn't for you anyway! To be honest, you seem happy to carry on with your nonsurgical treatments and I was surprised to hear you say you were considering surgery. Different things work for different people - just do what you're most comfortable with :)

Yes exactly Toni - it is a matter of semantics I suppose. You see there exists literature which states that surgery does not halt deterioration 10 years post operatively. I've tried to personally search the literature to test that statement. Seems it is true - in speaking about what the literature supports. No, of course exploring this is not a deal breaker in the course of making my personal decisions.

As for semantics - the term deterioration may mean more than simply curvature progression. I'm trying to clarify that with a medical professional now. I cant find a clear definition of clinical deterioration in terms of spinal surgery, but I've been reading things that suggest it may refer to more than just curvature progression. Like unresolved (or increased) pain, progressive limited mobility, lung function, etc etc. If the clinical use of the term deterioration is multi factorial - then it does become more important to me in terms of future outcomes - and something I want to watch for in the literature.

You are right it is my back and my choice. As it is for anyone. I support and respect the choices anyone makes - surgical or non surgical. My choice at this point in my life is to explore rehabilitation. I could use some support while keeping an eye on all options - that is something I will be doing for the rest of my life because one never knows with any real certainty which direction any given case may go.

My current pain issues are not horrendous, but it was not that long ago I was ready for surgery because of debilitating pain, 24/7. That was a phase that lasted two years, the suffering of it was enough to bring me to the table without question. I am most grateful to have taken one last chance at a rehabilitative method in order to to circumvent surgery, given my age, medical condition, and life style. I was able to move past that experience - but because of the experience, I remain ever mindful of the unknown. Only now I ask questions in earnest while in search of future choices that may improve the quality of my life - regardless of which direction things may go. I'm grateful for many here who have a knowledge greater than mine, and who have helped me better understand many things.

My current choice is to continue with rehabilitation over the course of the rest of my life - I cannot know if that will be possible or not. So I must keep an eye on both areas - surgical and non surgical. Also given the genetics of IS I could easily have a grandchild one day, who could benefit from what I learn. And there is always the off chance that someone else in our support forum may benefit from my own experience - as I have benefited from others here.

I hope this better explains my purpose here - if that needs to be explained.

As for the comparison between surgery and bracing in the study - I didn't make up the obvious ... it's right there in black and white. Of course it is only one - rather limited study.

[tonibunny]

Let's see now, they started out with 283 patients and attempted to follow their progress longterm. They were able to follow 252 of them for at least 22 years.

There were 156 surgically treated people and they were able to follow 142 for 23 years. After that time, every single one of them showed no change in Cobb Angle (because 3.5 degrees is well within the accepted +5/-5 degree margin of error).

Thus, this study shows that surgery is extremely successful in halting deterioration of scoliosis in terms of the progression of the curves. 100% of participants in the study experienced no discernable curve progression. That's quite an impressive statistic! :) And, since scoliosis is medically defined as an "abnormal lateral curvature of the spine", it is evident that spinal fusion surgery does halt scoliosis and this study is proof of that.

Your worries seem to be concerning the secondary problems that can be associated with scoliosis, rather than the actual scoliosis itself. You want to know if these problems can be halted too. Not everyone has pain, but quite naturally this is what you're most worried about, because pain has been the major issue for you. I don't need to go hunting for studies about this because it is well known that surgery doesn't always fix pain. All anyone can do is talk to their surgeon about their own particular case and ask them to use their expertise to judge whether surgery would be likely to help their pain or not.

As you'll know, surgery for pain is nearly always the last resort and people are generally advised to try all sorts of other pain management techniques first. Your use of the Spinecor brace seems to be working for you, and I'm very glad to hear it :)

[skevimc]

Thus, this study shows that surgery is extremely successful in halting deterioration of scoliosis in terms of the progression of the curves. 100% of participants in the study experienced no discernable curve progression. That's quite an impressive statistic! :)

Somewhat of a minor point, but thought I'd clarify. The study does not say that 100% of surgical participants experienced no discernible progression. The average was 3.5° ± 3.9° with a range of -9° to +14°. Probably safe to say that 70% definitely saw no discernible progression. The next ~20% saw 5-9° progression with the remainder probably close to the 14° high end.

The benefits of bracing would be blurred as well.

[tonibunny]

Ah, I see, thank you! I only had access to the abstract. I did think that the results were surprisingly good :)

[mamamax]

It is difficult to use surface information only when trying to make an interpretation that can be applied in forming any logical conclusion. It really does take a keen eye to read and understand these presentations.

I’ll never be an expert at it – and will always appreciate experience like yours - thank much for showing me how to read this a bit better.

Without more information specific to each and every patient participating in any study it is difficult to do more than speculate in terms of approximations.

I think reading such studies is a fine art – thank you for the clarification. Like Tonibunny, I do think the results are surprisingly good, for both methods - on the surface :-)

[mamamax]

Let's see now, they started out with 283 patients and attempted to follow their progress longterm. They were able to follow 252 of them for at least 22 years.

There were 156 surgically treated people and they were able to follow 142 for 23 years. After that time, every single one of them showed no change in Cobb Angle (because 3.5 degrees is well within the accepted +5/-5 degree margin of error).

Thus, this study shows that surgery is extremely successful in halting deterioration of scoliosis in terms of the progression of the curves. 100% of participants in the study experienced no discernable curve progression. That's quite an impressive statistic! :) And, since scoliosis is medically defined as an "abnormal lateral curvature of the spine", it is evident that spinal fusion surgery does halt scoliosis and this study is proof of that.

Your worries seem to be concerning the secondary problems that can be associated with scoliosis, rather than the actual scoliosis itself. You want to know if these problems can be halted too. Not everyone has pain, but quite naturally this is what you're most worried about, because pain has been the major issue for you. I don't need to go hunting for studies about this because it is well known that surgery doesn't always fix pain. All anyone can do is talk to their surgeon about their own particular case and ask them to use their expertise to judge whether surgery would be likely to help their pain or not.

As you'll know, surgery for pain is nearly always the last resort and people are generally advised to try all sorts of other pain management techniques first. Your use of the Spinecor brace seems to be working for you, and I'm very glad to hear it :)

On the surface, and without more information than the abstract provides: The deterioration of the curves was around 3.5° for the surgically treated subjects and around 7.9° for the brace-treated subjects. While the figures for the surgically treated patients are quite low indeed – so are the figures for the brace treated patients. Making a case for both treatments, considering that on the surface, observations 22 years post treatment show: the difference between treatments is around 4.4°. Without more specific data on each and every single study subject, initial results are impressive, albeit “blurry.” Very interesting study this one from 2001, which examines both treatments as applied over 40 years ago among two groups 22 years post treatment. Since then, both methods find improved methodology and perhaps as patients we are provided more justifiable choices (when choice is possible).

Thank you for the kind wishes on my adult rehabilitative experience so far – I pray the benefits continue as I search out more rehabilitative methods to better support the condition of my condition in the years ahead, as best I can with my methods of choice. I would say the future is more hopeful in both surgical and rehabilitative arenas – for both adolescents and adults, than was the case 40 years ago in the US.

As for the cosmetic comparisons between both methods (not discussed in the above study), there exists comparisons today between surgical and rehabilitative results among those like Hawes (rehabilitative based exercise without bracing) and Schroth (which uses bracing in addition to a structured scoliosis specific rehabilitative based exercise), etc. Admittedly at my age, the cosmetic concern is not foremost in my mind – I’m happy to avoid looking like Kieth Richards in my old age (or so called golden years) and I’m personally more concerned with avoiding the possibility of difficult to handle health and well being issues in the future - still, it is possible that acceptable levels of comparative cosmetic improvement may be found for both adolescents and adults, in my opinion. Cosmetics (and certain other effects) of course being a highly subjective thing, as evidenced by the dissonance effect discussed in the literature.

[Karen Ocker]

I am wondering what the starting curves were either at surgery or at bracing.

[Pooka1]

I am wondering what the starting curves were either at surgery or at bracing.

Bingo.

You're good.

[mamamax]

My original question/statement was: there is nothing in the literature that states surgery halts deterioration 10 years post operatively (by either old or new methods and instrumentation).

Now in reading some literature - I thought deterioration primarily meant progression - looks like a few others did also :-)

I asked an orthopedic surgeon about the use of the term in the literature in reference to spinal surgery. Turns out the clinical use of the term deterioration is: when signs of osteoarthritis of the little spinal joints are visible (on x-ray). This does not correlate with pain.

Just wanted to clarify that term - still, we had a great discussion!

[tonibunny]

Hi Mamamax,

You sound as though you're disappointed because we didn't talk about what you wanted to talk about, but surely that can't be true? After all, you were asking about "deterioration" and it was quite clear that what you meant was "deterioration of curvature". I'm sure if you were interested in osteoarthritis or anything else then you'd have said that explicitly at the time, and let me know that the paper I found for you wasn't the sort of thing you were after? I can't believe you'd let me take time trying to help you by discussing curve progression if this isn't actually what you were asking about.

It seems to me that deterioration is probably synonymous with degeneration in terms of spinal surgery in general, but when you are specifically discussing deterioration of scoliosis it will mean progression of the curvature first and foremost. Does that sound sensible?

Do you think there could be some unscrupulous practitioners out there who might try to put patients off surgery by claiming that "there is no proof that surgery halts the deterioration of scoliosis" because they know that most people will assume this means that surgery doesn't stop the curvature from progressing? I do. Luckily, we've had this discussion so it hasn't been a waste of time - they'll be able to read all about it here :)

[skevimc]

I am wondering what the starting curves were either at surgery or at bracing.

Surgical patients started at ~62, corrected to ~31, last follow up ~36.

Bracing patients started at ~33, corrected to ~24, last follow up ~37.

These are all averages with std ~10. The table listing all the data has several time point checks and has everything broken down by curve type. Both groups have pretty equal numbers of each curve type.

[Pooka1]

Surgical patients started at ~62, corrected to ~31, last follow up ~36.

Bracing patients started at ~33, corrected to ~24, last follow up ~37.

These are all averages with std ~10. The table listing all the data has several time point checks and has everything broken down by curve type. Both groups have pretty equal numbers of each curve type.

+2 points for Karen Ocker

[mamamax]

Hi Mamamax,

You sound as though you're disappointed because we didn't talk about what you wanted to talk about, but surely that can't be true? After all, you were asking about "deterioration" and it was quite clear that what you meant was "deterioration of curvature". I'm sure if you were interested in osteoarthritis or anything else then you'd have said that explicitly at the time, and let me know that the paper I found for you wasn't the sort of thing you were after? I can't believe you'd let me take time trying to help you by discussing curve progression if this isn't actually what you were asking about.

Really Toni - I thought deterioration as used in the literature related to curvature progression (and a lot of other things) - I was really surprised to find out it meant something else. And posted the clarification when I got it - which was after the discussion. And the reason I posted the clarification was to avoid confusion in the future, if the term came up in other papers discussed. I would never purposely waste your time. And I don't think the paper, and discussion of it was a waste of time either.


It seems to me that deterioration is probably synonymous with degeneration in terms of spinal surgery in general, but when you are specifically discussing deterioration of scoliosis it will mean progression of the curvature first and foremost. Does that sound sensible?

Yeah - I think it's sensible and that most lay-people would consider that deterioration is defined by progression - but it seems the clinical term used in the literature, means something else. So in reading the literature as we often do, best to know the difference (I think).


Do you think there could be some unscrupulous practitioners out there who might try to put patients off surgery by claiming that "there is no proof that surgery halts the deterioration of scoliosis" because they know that most people will assume this means that surgery doesn't stop the curvature from progressing? I do. Luckily, we've had this discussion so it hasn't been a waste of time - they'll be able to read all about it here :)

If there are - I think their peer reviewed submissions would be rejected for clarification of terms. Am I being naive in that assumption?

I don't understand the comment: Luckily, we've had this discussion so it hasn't been a waste of time - they'll be able to read all about it here

[mamamax]

Surgical patients started at ~62, corrected to ~31, last follow up ~36.

Bracing patients started at ~33, corrected to ~24, last follow up ~37.

These are all averages with std ~10. The table listing all the data has several time point checks and has everything broken down by curve type. Both groups have pretty equal numbers of each curve type.

Thanks again skevmic - good to know. Is there a link to this information - or is it available on-line?

[skevimc]

Thanks again skevmic - good to know. Is there a link to this information - or is it available on-line?



The article is available online but only with subscription (yay university/medical library). I know when I was at KU, the library was open to the public because it was a state funded school. No ID required for entry. If you are near a State University they might have a hard copy of many articles you come across.

[mamamax]

Surgical patients started at ~62, corrected to ~31, last follow up ~36.

Bracing patients started at ~33, corrected to ~24, last follow up ~37.

These are all averages with std ~10. The table listing all the data has several time point checks and has everything broken down by curve type. Both groups have pretty equal numbers of each curve type.


I don't think a truly good comparison can be made as treatment recommendations for surgery and bracing have such a wide variance. We wouldn't see a group bracing at 62 degrees, or a large surgical group starting at 33 degrees.

I'm not sure what we gather from this study other than at the time (40 years ago) - progression rates 22 years post treatment for both groups was, minimal.

Would it be reasonable to conclude that IF a similar study were done today, that the outcome might conceivably be similar? I don't know ... just pondering. I'm thinking we could debate it forever - but in the end, we probably couldn't prove anything.

[mamamax]

The article is available online but only with subscription (yay university/medical library). I know when I was at KU, the library was open to the public because it was a state funded school. No ID required for entry. If you are near a State University they might have a hard copy of many articles you come across.

Darn - but good information for those close to State Universities ... about an hour round trip for me. Sweet to have a subscription :-)

[tonibunny]

It's OK, I don't think you'd waste my time :) I'm glad you found the discussion interesting.

This discussion has shown that it's definitely good to know that "deterioration" in literature doesn't refer to progression of curves. It would probably be a good idea for any practitioners out there to explain that explicitly to patients if they can see those patients being confused by it, don't you think?

Sadly I have seen unscrupulous practitioners out there who do try to deliberately mislead people, in order to scare them off surgery and get them to pay for alternative treatments instead :( They are just a tiny minority - I do believe that most practitioners everywhere are honest and trustworthy - but they are out there. And well, you'd think that there would be no problem with them publishing stuff in their own peer-reviewed journals because they would, amongst themselves, understand what "deterioration" means. The difficulty simply lies in if they pass this information to a patient without making sure that patient is fully aware of what it means, and purposefully allow them to be misled.

For instance, it bothers me that such a practitioner could say to a patient "Don't have surgery! There's absolutely no evidence that it will stop your curve from deteriorating!" when the context of their conversation clearly shows that the patient wants to know about progression. And then, supposing the patient goes on somewhere like Facebook and misguidedly tells other patients "Don't have surgery! My practitioner told me that there's no evidence that it stops your curve from progressing anyway! So you just keep curving up!" That would be terrible, wouldn't it?

What I meant by "our discussion hasn't been a waste of time, they'll be able to read about it all here" refers to the fact that now we've had this discussion, anyone who has been led to believe that surgery doesn't prevent one's curve from progressing can take a look at the results of this study, and be reassured :)

And yes, it's an old study - but it has to be, for there to be longterm results! I think people will look at it logically to try to work out what they think the likely outcome would be for someone having surgery today. The study refers to people having spinal fusions (the result of which is exactly the same in today's surgery) and refers to those fusions being done with Harrington Rods. Harringtons generally only attach to the spine at the ends, so they are a lot less stable than the rod and pedicle screw constructs of today, which attach very solidly into nearly, if not all, of the fused vertebrae and are very robust. I think a lot of people would think it sensible to assume that a spine instrumented with modern hardware is going to be far less likely to continue to curve than a spine instrumented with a Harrington, and longterm results will be even better for people having surgery today :)

BTW I'm not really reading this study as a comparison between bracing and surgery, as I would have expected the braced patients to have subsurgical curves anyway so they can't really be compared.

[mamamax]

Thanks Toni ... I would say your time is never wasted :-) As for the study we discussed, it was designed to be a comparison of methods, so that's how I tried to read it. Literature can be difficult for lay people to read, for certain. Here are my thoughts on "the literature."

The literature, seems an entity unto itself (guess that is why it is called a "body of evidence"), it is interesting from the standpoint that firstly, I don't think it is written for lay-people, but rather for the scientific community looking to provide evidence towards justification of treatments. With today's technology however, more lay-people have access to these presentations. It is interesting to watch debates within the literature itself, between contributors who seem not all that different than ourselves in that they sometimes take from these studies what they want and leave out other things that would not support their own positions. For example, the numerous studies that are done on quality of life (on both sides of the fence) are flawed by the fact that the dissonance effect was neither discussed or ruled out and therefore faulty evidence is presented. So basically, I see the literature as its own forum, so to speak, with its own unique language that is sometimes difficult to interpret and which is designed for its own debate of methods - and oftentimes I wonder if the best studies are simply a matter of who has the best grant writer making them even possible in the first place. Now that patients have access to these presentations, I wonder how this may change design and presentation in the future, as patients become more aware that they even have the ability to research findings.

Martha Hawes being a unique example of a patient who has researched the literature, and even contributed to it, resulting in contribution to a growing body of evidence supporting non surgical methods. Her contributions found Here (http://scoliosisjournal.com/content/4/1/27), Here (http://scoliosisjournal.com/content/1/1/6), Here (http://scoliosisjournal.com/content/1/1/5), and Here (http://scoliosisjournal.com/content/1/1/3) - in addition to her book Scoliosis and the Human Spine, and for those who seek it, her memoir. This helps patients and parents, not so much judge which method is better - but provides them with more information in making individual choices for themselves, or loved ones. It is good to have choices, and it is good to have supportive literature as the body of evidence grows.

[Pooka1]

With today's technology however, more lay-people have access to these presentations.

This is a huge, dangerous problem in my opinion. I think access should remain open but the downside is lay folks completely misunderstanding the literature and acting on it.


Martha Hawes being a unique example of a patient who has researched the literature, and even contributed to it, [...]

Hawes holds a PhD in a scientific field (plant pathology IIRC). She is well aware of how the scientific method works and how to honestly write up research results. She seems to have done a considerable amount of reading in the field of scoliosis which is like starting virtually from scratch when starting with a degree in plant path..


It is good to have choices, and it is good to have supportive literature as the body of evidence grows.

Oh geez... (http://whyevolutionistrue.files.wordpress.com/2010/08/i-splained-elebinty-times-1-copy.jpg)

:)

The literature conclusions are often false for many reasons despite the vast majority of researchers being intellectually honest. Coming upon the correct answer in uncontrolled studies would just be a chance occurrence. There is a reason uncontrolled studies are unpublishable in non-medical fields.

[mamamax]

Time for Mirror work ...

http://www.bing.com/videos/watch/video/little-girl-gives-herself-a-pep-talk/20ajmekq

[Ballet Mom]

Time for Mirror work ...

http://www.bing.com/videos/watch/video/little-girl-gives-herself-a-pep-talk/20ajmekq

I love that link mamamax!

I think the benefits of people having more access to the literature FAR outweighs any negatives. I am happy that people can be more informed and more responsible for knowing about their own medical conditions and helping to make good decisions regarding their health, in conjunction with their medical professionals. Most doctors visits are very short with very limited information provided.

And it should help keep science intellectually honest. See Climategate for an example.

Anyone worried about lay people reading these studies should realize that most people who lack the capacity to make sense of them will probably not have the inclination to read them in the first place. Most people's eyes would glaze over unless they have some familiarity with science and statistics.

[hdugger]

The only other contact between lay people and medical research is the media - whose summaries of research are, IMO, far worse then just reading the reports yourself.

The thing is, people are exposed all the time to information which they haven't had adequate training to make sense of. That says much less about the general capacity of people then it says about our educational system.

As someone who went to school with doctors studying medical research, my sense is that doctors aren't much better at making sense of the research then anyone else. They understand medical part of it, but they often don't have a good grasp of the research part of it.

Yet another reason why there ought to be an epidemiologist in every doctor's office :)

[Pooka1]

The only other contact between lay people and medical research is the media - whose summaries of research are, IMO, far worse then just reading the reports yourself.

The thing is, people are exposed all the time to information which they haven't had adequate training to make sense of. That says much less about the general capacity of people then it says about our educational system.

Agree 1,000%. And our august NIH director just drew another spanking, this time from a science journal editor for potentially undermining science education even more than it already it. And only Turkey, among 34 first world countries, is more ignorant about evolution and the age of the earth than the US. We are the laughing stock of the world when it comes to science knowledge among the unwashed masses because of this.

The research section on this forum is Exhibit A in the dangers of folks without a lick of science training talking at great length about medicine.


As someone who went to school with doctors studying medical research, my sense is that doctors aren't much better at making sense of the research then anyone else. They understand medical part of it, but they often don't have a good grasp of the research part of it.

Agree and have made this point myself. An MD is not a research degree as evidenced by the fact that there are joint MD/PhD programs. Still, these guys aren't dopes and can boot up quickly.


Yet another reason why there ought to be an epidemiologist in every doctor's office :)

Agree again!

[LindaRacine]

Access is limited to members I believe - but membership is open to all at no charge, and posting is optional :-)


No, not all.

[hdugger]

Well, this is going to have the odd effect of me responding, spookily, to nothing at all, but, here goes.

The link was interesting, but it's still science working out the details *based on a received moral code.* So, it's using scientific methods to test an already-established worldview, which has no (and can have no) scientific basis.

For example, in the second study, babies show that they can tell "good from evil" by rewarding "good" behavior like "helping those in distress." But I see nothing which indicates exactly how they decided that "helping those in distress" *is* good behavior. It's just a received moral code, no different from religion. There's no way, within science, to decide what *is* good and evil. That judgement has to come from the encompassing worldview.

[hdugger]

hmm, that didn't seem to go through.

But . . . then you can claim that anything is an axiom, "self-evident" and not requiring of investigation.

Why not take as self-evident any piece of cultural consensus, like the once-belief that women are not being capable of handing heavy intellectual lifting, and just use science to show why that is so? In what way is that "good science" - it's just providing the details to back up an un-investigated worldview.

Right? Aren't your "self-evident axioms" a "way of knowing."

[hdugger]

No the axioms are a starting point and can be assessed by what can be built on the basis of them. Mathematical axioms are accepted because they work.

Yes, you'd think so. But they often become an unquestioned part of all future research without any further examination.

Hence, the interesting tale of the IQ test.

When the IQ test (developed in France) was first brought to the US, they ran some testing sessions and saw that French children did better then American children. Well, that couldn't be right (self-evident), so they changed the questions until French and American children did the same.

Then they did some more testing and found that girls did better then boys. Once again, *that* could not be right (self-evident), so they changed the questions until boys and girls did the same.

Then they ran the test again and found out that whites did better than blacks. Hmm, what an interesting result, they said. I wonder why blacks aren't as intelligent?

Sometimes they tried to soften it - "oh, maybe they're just as intelligent but they're just less well-educated" - and sometimes they went all racist with it - "well, I guess this just goes to prove that blacks aren't as smart."

But *noone thought to re-standardize the test so that blacks did as well a whites.* And we've been dealing with the fallout from *that* "self-evident axiom" for lo these many years.

Science provides details within a given worldview - or your "self-evident axioms" (whose self-evidentness (!) varies across place and time) but it does not have the tools to examine those things which are considered "self-evident" because those questions are outside science's realm.

[tonibunny]

Please, if I ever get things wrong, interpret studies the wrong way etc, tell me! It is always OK to let me know if I'm wrong about stuff, I don't mind - I'm happy to admit that I'm just an amateur (or "bunny", it goes with my name :D) and I won't learn otherwise! I was trying to help Mamamax out here by posting the study as to my untrained eyes it looked like the sort of thing she was after, but of course I'm no scientist, I'm not going to get my panties in a bunch if you tell me I'm barking up the wrong tree :)

[Pooka1]

Please, if I ever get things wrong, interpret studies the wrong way etc, tell me! It is always OK to let me know if I'm wrong about stuff, I don't mind - I'm happy to admit that I'm just an amateur (or "bunny", it goes with my name :D) and I won't learn otherwise! I was trying to help Mamamax out here by posting the study as to my untrained eyes it looked like the sort of thing she was after, but of course I'm no scientist, I'm not going to get my panties in a bunch if you tell me I'm barking up the wrong tree :)

Tonibunny! Nobody was referring to you! Your analysis was top-shelf and I'll bet it was correct. You have been in this game for a long time and I think you are on Hawes's level in terms of picking up this field... someone with no formal training but who knows a lot. Linda is also in this category though might surpass Hawes in this regard.

I was referring to most of the stuff that gets posted in the research section for the longest while now.

[hdugger]

But pretending to know things that can't possibly be known or that are in fact NOT known is intellectually dishonest. The Pope or any religious figure or person has no more knowledge of these things than atheists. They just pretend to have this knowledge whereas atheists admit they don't know.

But . . . those following science are doing the same thing. All these years of having discussions about why it is that whites are smarter than blacks because it's a "fact" proved by science, when, in fact, it's nothing other than gussied up "self-evident truth."

With a flip of a self-evident switch, we could have been making decisions based on the "fact" that girls were smarter then boys.

It's not as if people claim they don't know these things. Because of all of the scientific research using IQ tests, this stuff forms the basis of lots of things we "know."

Yes, it's possible that in time someone will correct that fact, but anyone acting on that "fact" now, just because it came from science, is no different from someone acting on religious faith. We have faith that our science *is* fact. But testing and replication aren't what makes something a fact - if the self-evident truth that it's based on is wrong, then the whole thing is wrong, no matter how many times you've tested and replicated.

On the study Linda posted yesterday, none of those measures (SRS-22, etc.) are real measures - they're just surveys people made up to get at the real thing. Yet, here we are discussing the results as if they're facts. Do they mean that old people got more improvement? Could be. Or, maybe, it's some kind of cognitive dissonance that they felt like they *had* to feel better because they went through so many complications. (I'm not strongly suggesting this, I'm just throwing it at as an alternative fact).

But, that study could easily become some codified "fact" - look old people show greater improvement in how they feel - even though we have no real way of measuring how people really feel. It's maybe not unknowable, but it's not measurable by science.

So, science is just giving us the illusion that we know something, which we believe because we have faith in it's ability to ask and answer questions. But, that's doesn't make what it produces a fact. Many times, it's just our faith that it's a fact.

[hdugger]

hdugger, I think all your comments reduce to your idea that psych is a science. There is little to no evidence for that of which I'm aware. Folks are invited to edify me on that.

But, much of medical research is based on psychology or people's reported feelings. How do you know if a treatment improves scoliosis? Yes, the Cobb angle is measurable, but some treatment which reduced that angle while putting people in excruciating pain would not be a successful treatment. Or one which improved the Cobb angle but decreased their quality of life.

So, I'd venture that *any* useful measure of a scoliosis treatment would have to include unmeasurables - like pain or quality of life.

That makes scoliosis research a mixture of medical research (not so great) and psychology research (terrible). That makes is largely "unknowable" by science.

[Pooka1]

But, much of medical research is based on psychology or people's reported feelings.

WHAT?!? I would guess 99% of it is based on lab tests and invasive and non-invasive imaging.


How do you know if a treatment improves scoliosis? Yes, the Cobb angle is measurable, but some treatment which reduced that angle while putting people in excruciating pain would not be a successful treatment. Or one which improved the Cobb angle but decreased their quality of life.

I don't see the problem. Either surgery can help pain or it can't. Either PT can help pain or it can't. If it can, how variable is the result? The issue with scoliosis as far as I can glean is the HUGE variability in its course, both treated and untreated. The least variability I think is probably associated with fusion in adolescents. Those testimonials group pretty tightly as restoring the look and feel of normalcy though of course there are outliers.


So, I'd venture that *any* useful measure of a scoliosis treatment would have to include unmeasurables - like pain or quality of life.

That makes scoliosis research a mixture of medical research (not so great) and psychology research (terrible).

Okay. By the way, some day maybe fMRI can help in quantifying pain. Pain is a very complex physical and mental state. It may never be cracked. All we can do is hit it with our only tool.. science/medicine.

[LindaRacine]

I guess that deleting dozens of posts over the last few days has not been enough of a hint that there are some things that cannot be tolerated on a public forum such as this because 1) they are totally off topic and 2) someone always gets hurt. Stop it now!




On the study Linda posted yesterday, none of those measures (SRS-22, etc.) are real measures - they're just surveys people made up to get at the real thing. Yet, here we are discussing the results as if they're facts. Do they mean that old people got more improvement? Could be. Or, maybe, it's some kind of cognitive dissonance that they felt like they *had* to feel better because they went through so many complications. (I'm not strongly suggesting this, I'm just throwing it at as an alternative fact).
Yes, but I get to see these people in clinic every week. They don't just indicate their outcomes on questionnaires. They tell us all the time how happy they are. Our patients are fully informed prior to making their decision to have surgery. People over the age of 65 have a very significant chance of having one or more complications, and they make the decision that the reward outweighs the risk. So, when they have complications, they're smart enough to know that it's actually "normal." They get through the complication and go on to having a real qualify of life.

[mamamax]

I guess that deleting dozens of posts over the last few days has not been enough of a hint that there are some things that cannot be tolerated on a public forum such as this because 1) they are totally off topic and 2) someone always gets hurt. Stop it now!


Thank you Linda.

[hdugger]

I guess that deleting dozens of posts over the last few days has not been enough of a hint that there are some things that cannot be tolerated on a public forum such as this because 1) they are totally off topic and 2) someone always gets hurt. Stop it now!

Actually, we'd already wrapped up our discussion, but I'll reply to this post.

I'm puzzled at the idea that reasoned discourse is the one intolerable sin on a discussion forum. You're the moderator, of course, so feel free to delete, but I do wonder why you don't step in so firmly in cases where people actually *are* being hurt, as opposed to cases where we're just boring everyone to tears.

I would argue pretty fervently, though, (and be pretty fervently deleted, I suppose) that "factiness" of medical research is not off topic in a medical forum, particularly one in which medical research is posted and discussed.


Yes, but I get to see these people in clinic every week. They don't just indicate their outcomes on questionnaires. They tell us all the time how happy they are. Our patients are fully informed prior to making their decision to have surgery. People over the age of 65 have a very significant chance of having one or more complications, and they make the decision that the reward outweighs the risk. So, when they have complications, they're smart enough to know that it's actually "normal." They get through the complication and go on to having a real qualify of life.

Yes, exactly. You know because you've seen it. Not because of the science. That was exactly my point.

I'm not questioning the veracity of the outcome. I'm saying that it cannot be subject to rigorous scientific investigation because feelings (happiness, pain, quality of life) are not clearly defined nor precisely measurable. All science can say is what that study you quoted said - old people score higher on their SRS-22 after the surgery then they did before. It cannot claim, with any veracity, to pretend to know what that higher score means. It's all just reading tea leaves after that.

That doesn't mean it's not knowable - I take personal experience pretty seriously. It's just means that it's not knowable through science.

[LindaRacine]

Actually, we'd already wrapped up our discussion, but I'll reply to this post.

I'm puzzled at the idea that reasoned discourse is the one intolerable sin on a discussion forum. You're the moderator, of course, so feel free to delete, but I do wonder why you don't step in so firmly in cases where people actually *are* being hurt, as opposed to cases where we're just boring everyone to tears.

I would argue pretty fervently, though, (and be pretty fervently deleted, I suppose) that "factiness" of medical research is not off topic in a medical forum, particularly one in which medical research is posted and discussed.



Yes, exactly. You know because you've seen it. Not because of the science. That was exactly my point.

I'm not questioning the veracity of the outcome. I'm saying that it cannot be subject to rigorous scientific investigation because feelings (happiness, pain, quality of life) are not clearly defined nor precisely measurable. All science can say is what that study you quoted said - old people score higher on their SRS-22 after the surgery then they did before. It cannot claim, with any veracity, to pretend to know what that higher score means. It's all just reading tea leaves after that.

That doesn't mean it's not knowable - I take personal experience pretty seriously. It's just means that it's not knowable through science.
So many responses come to mind, but I'll show remarkable restraint.

[mamamax]

I could be wrong (it has happened before), but I saw Linda's posting in a different light. Recently there were several deleted posts in a thread intended as place for a parent to post her experience, in a supportive atmosphere. Many comments were deleted, and rightly so, because they were off topic and explosive in nature - or, things which would not provide said patient with a supportive environment.

So I think Linda saw that this had the propensity to happen in this thread and she was trying to circumvent it. A proactive approach.

Bty, I suggested that we write to Lori Dolan (in the other thread) and query the clinical use of the term "in-brace study." I did write her and this was her reply:



I’m not aware of any studies where all the x-rays are taken with the brace on – usually in-brace x-rays are taken within a few weeks after the brace is delivered to check on pad placement, trimlines, decompensation, and the amount of curve correction. Otherwise, x-rays are taken out-of-brace.

Sometimes people will use the term “study” as they would radiograph, xray, film, etc. But usually it means what you’d think it does – i.e. a research study.

[hdugger]

Bty, I suggested that we write to Lori Dolan (in the other thread) and query the clinical use of the term "in-brace study." I did write her and this was her reply:

Oh you and your infernal going to the sources to get an answer instead of fighting it out tooth and nail with insufficient information :)

Thanks for asking. Always good to have real info from the sources.

[flerc]

If they are outside science's realm then they are nowhere. I accept that some things are probably not knowable.

But pretending to know things that can't possibly be known or that are in fact NOT known is intellectually dishonest. The Pope or any religious figure or person has no more knowledge of these things than atheists. They just pretend to have this knowledge whereas atheists admit they don't know.

This is not OF TOPIC????

[mamamax]

Oh you and your infernal going to the sources to get an answer instead of fighting it out tooth and nail with insufficient information :)

Thanks for asking. Always good to have real info from the sources.

Hey! I represent that remark (haha) ... Thanks & you're welcome :-)

[mamamax]

This is not OF TOPIC????

I would say that due to nature of the post, in addition to it's religious nature .. and pretentious intellectual dishonesty, that yes, it was totally off topic. Up to Linda to decide whether or not to delete it - big job taking care of such things in this forum.

[mamamax]

Don't get drawn into a discussion about religion with Pooka1 - it will shut this thread down!

[LindaRacine]

Please report posts on politics, religion, or things that are truly off-topic by clicking on the red triangle of that post.

[Pooka1]

Okay I have removed all my posts on:

1. equestrian issues
2. psych as a non-hard science
3. the Pope as just a mammal like everyone else with no special knowledge

Apologies for making more work for Linda.

[hdugger]

Okay I have removed all my posts on:

1. equestrian issues
2. psych as a non-hard science
3. the Pope as just a mammal like everyone else with no special knowledge



Leaving me feverishly discoursing with someone noone else can see. Apparently you *are* a pooka :)

[mamamax]

You know, sometimes this place reminds me of the cartoon Get Fuzzy (attached)

[Pooka1]

Leaving me feverishly discoursing with someone noone else can see. Apparently you *are* a pooka :)

Well, I did post a bunch of off-topic crap in this thread. In removing the posts pre-emptively, I was just trying avoiding the inevitable spanking. :)

[Ballet Mom]

Bty, I suggested that we write to Lori Dolan (in the other thread) and query the clinical use of the term "in-brace study." I did write her and this was her reply:



I’m not aware of any studies where all the x-rays are taken with the brace on – usually in-brace x-rays are taken within a few weeks after the brace is delivered to check on pad placement, trimlines, decompensation, and the amount of curve correction. Otherwise, x-rays are taken out-of-brace.

Sometimes people will use the term “study” as they would radiograph, xray, film, etc. But usually it means what you’d think it does – i.e. a research study.


Kudos mamamax! I vaguely remember you suggesting that...lol! How nice of Lori Dolan to respond to you. That was very kind of her to take the time. :)

[Ballet Mom]

oh you and your infernal going to the sources to get an answer instead of fighting it out tooth and nail with insufficient information :)

thanks for asking. Always good to have real info from the sources.

lol! :)

[foofer]

Leaving me feverishly discoursing with someone noone else can see. Apparently you *are* a pooka :)

Yes, it is strange to read random postings in response to no one, but not nearly as bizarre as watching 3 pages disappear before my very eyes while I was rubbernecking from afar...

[hdugger]

Yes, it is strange to read random postings in response to no one, but not nearly as bizarre as watching 3 pages disappear before my very eyes while I was rubbernecking from afar...

lol. Next we'll start Gaslighting you - "balletmom and Pooka fight? What are you talking about?" ;)

[foofer]

:)

and I was really intrigued with your mediation efforts. I was learning a lot and may have to hit you up another time, another place for some more info on these methods!

Getting off topic and gonna get off!;)

[Pooka1]

Yes, it is strange to read random postings in response to no one, but not nearly as bizarre as watching 3 pages disappear before my very eyes while I was rubbernecking from afar...

dhugger's stuff is pretty good. Mine stuff was largely penetrating glimpses into the obvious. You missed nothing you probably didn't already know.

[Ballet Mom]

"Mine stuff was largely penetrating glimpses into the obvious"

ROFL!

[mamamax]

Kudos mamamax! I vaguely remember you suggesting that...lol! How nice of Lori Dolan to respond to you. That was very kind of her to take the time. :)

Ballet Mom - It never ceases to amaze me how many people Like Lori Dolan are more than eager to share their knowledge with just about anybody who has a genuine thirst for such things. I think hdugger has also written to the SEAS authors and requested some info which proved valuable here in forum. I wrote one of those authors also and was gifted with a ton of information. So really this kind of info is not that hard to get. At one point Lori was trying to join the forum to help keep us informed of the BrAist Study - but somehow that never came through :-(

[mamamax]

Thanks to Dr. Weiss and Lori Dolan we have some definitions of terms used in the literature that may prove useful as this thread evolves (thanks to both).


Deterioration - when signs of osteoarthritis of the little spinal joints are visible (on x-ray). This does not correlate with pain. (Source: Hans Weiss)


In-Brace Study - I’m not aware of any studies where all the x-rays are taken with the brace on – usually in-brace x-rays are taken within a few weeks after the brace is delivered to check on pad placement, trimlines, decompensation, and the amount of curve correction. Otherwise, x-rays are taken out-of-brace.
Sometimes people will use the term “study” as they would radiograph, xray, film, etc. But usually it means what you’d think it does – i.e. a research study. (Source: Lori Dolan)


Decompensation, or decomp - basically when the head isn't centered over the pelvis- this is why double curves are sometimes less noticable than single curves, because balance is maintained (Source: Lori Dolan)

[mamamax]

The problem I have with this is that Weiss does not seem to be applying the same critiques of other studies to his own.

Why would we expect him to? Really, I would like to know about your thoughts on that. I don't recall seeing authors heavily critiquing their own methods in the literature? I don't know how common that practice is.


He is pretty harsh on Negrini and the SEAS approach with one critique being that the studies lack any type of control group (I skimmed, but I think I'm reading that correctly). However, the main study he cites won an award for best clinical paper at SOSORT in 2008. I am not aware of any controlled trial using Schroth. As well he cites an RCT in China that evidently had good results (didn't present them) and good level of evidence (level Ib) but he criticized it because it lacked specific descriptions of exercises.....

I think Weiss has an eye for bracing technique and can see things on x-rays that many cannot - there may be more in the Negrini paper (Negrini S, Atanasio S, Negrini F, Zaina F, Marchini G. 2008. The Sforzesco brace can replace cast in the correction of adolescent idiopathic scoliosis: A controlled prospective cohort study. Scoliosis 3:1) that would support his opinions. Weiss states:



The only result as demonstrated in this paper as a figure seems to show an alleged correction after brace wearing. In clinically critising the spine as shown on the X-Rays it actually seems more immature after treatment than before, the Risser sign is more mature before treatment and pelvic width is bigger before treatment than after (http://www.scoliosisjournal.com/content/3/1/15/Figure/F3). Therefore this result cannot be regarded as being credible.

Could be a justifiable critique along with the statement that Considering the fact, that the average patient from this sample according to the SOSORT guidelines would not need any treatment at all, the study would not seem worthwhile performing (Figure 10). :eek:

The China thing ... seems there was also translation problems with the submission.


Oddly, his introduction says that the medical literature dismisses exercise as an option. But then he doesn't do a good job of presenting the convincing evidence.

Figure 4 is pretty convincing to me! Attached.


I don't know... Lots of Weiss references and details and, unfortunately, not much else. Now, I think Schroth has validity based on proposed physiology, but I doubt this posted article would make it past the peer review process.

I think Schroth is going through some generational upgrading. And maybe this article we are discussing is already obsolete. It was written in 2009 but shows up as 2010 at the university web site for some reason. From the article:



As has been shown, Scoliosis Intensive Rehabilitation (SIR), in its original form can no more be regarded as being effective when rehabilitation times have been reduced to 3-4 weeks, only (Weiss and Goodall 2009). The incidence of surgery for the patients receiving this in-patient program (Weiss, Weiss and Schaar 2003) is comparable to out-patient approaches (Maruyama et al. 2003, Rigo, Reiter and Weiss 2003), although the different studies have patient samples which are not necessarily comparable. The development of such research means that more intensive out-patient approaches seem more appropriate when one considers; time efficiency and new teaching approaches including experiential learning (ISR), as described within the book on "Best Practice" treatment (Weiss 2007a). Therefore an in-patient program, such as SIR is today regarded as outdated. Actually three day intensive programs based on the "experiential learning" approach of ISR are provided in the US, UK and in Germany at the first authors centre.


So actually - this article includes an author critique of SIR? Is that how you read it?

The newest method (developed by Weiss) is: SSTR (Scoliosis Short-Term Rehabilitation). A study on this now in review - available in a few months.

[mamamax]

So what the heck is SSTR (Scoliosis Short Term Rehabilitation) relative to Adolescent Rehabilitation?

As you might have guessed, I asked the best source. Whom, I'm not going to quote verbatim, because I have not asked permission to do so. But my take on it is this:

It is a method of short term rehabilitation with long term results which uses exercises specific to all the various curvature patterns along with bracing which results in cosmetic results arguably similar to surgery (when braces are worn appropriately during growth). The aim is not to do the exercises over the course of a lifetime - the aim of the exercise is the acquisition of a postural monitoring system allowing posture control along with corrected activities of daily living. One analogy could be like learning anew language, once fluent - no need to think about it, it is automatic. Once this has become automated - there is no longer any need to exercise. Short term rehab, or patient orientation is a matter of days vs weeks. The method is based upon the book: The Best Practice Method (HR Weiss).

The beauty of all this being that it could be implemented in US physical therapy departments. Older folks like myself would only require the PT exercise (bracing in some cases where pain is an issue), and some post surgical patients could also benefit from the PT exercise when pain remains an unresolved issue.

Looks win-win to me. Very much looking forward to upcoming publications.

[hdugger]

It is a method of short term rehabilitation with long term results which uses exercises specific to all the various curvature patterns along with bracing which results in cosmetic results arguably similar to surgery (when braces are worn appropriately during growth).

But no effect on the natural progression of the curve?

My son has actually managed to greatly improve the cosmetic look of his scoliosis/kyphosis through a mixture of PT and massage, so it's really holding the curve in place that we're interested in.

[skevimc]

Why would we expect him to? Really, I would like to know about your thoughts on that. I don't recall seeing authors heavily critiquing their own methods in the literature? I don't know how common that practice is.


What sticks out to me is that he is apparently discounting studies for things like not having a good control group, but ignores the same fault in his own studies. Unless I'm unaware of a randomized study that he has published.

A good study will highlight the obvious faults in their own study and a good peer review process will ensure that the faults are well identified and discussed. It's a very important process in publishing. It shows that you have really thought seriously about your study and understand its limitations.



I think Weiss has an eye for bracing technique and can see things on x-rays that many cannot - there may be more in the Negrini paper (Negrini S, Atanasio S, Negrini F, Zaina F, Marchini G. 2008. The Sforzesco brace can replace cast in the correction of adolescent idiopathic scoliosis: A controlled prospective cohort study. Scoliosis 3:1) that would support his opinions. Weiss states:



The only result as demonstrated in this paper as a figure seems to show an alleged correction after brace wearing. In clinically critising the spine as shown on the X-Rays it actually seems more immature after treatment than before, the Risser sign is more mature before treatment and pelvic width is bigger before treatment than after (http://www.scoliosisjournal.com/content/3/1/15/Figure/F3). Therefore this result cannot be regarded as being credible.

Could be a justifiable critique along with the statement that Considering the fact, that the average patient from this sample according to the SOSORT guidelines would not need any treatment at all, the study would not seem worthwhile performing (Figure 10). :eek:


Could be justified. Could also be an incorrect assessment. What exactly is he suggesting with that comment? That Negrini is presenting false data or that the skeletal age actually regressed? If he's just saying that the x-rays look funny, that alone doesn't discount the study as he is suggesting.





The China thing ... seems there was also translation problems with the submission.


Ok. But was there a problem or not? Was it a good study or not? It was an RCT with positive results. If you're going to present a 'review' and possibly critique the paper, it would be appropriate to make sure you're getting the story correct. Present the data and then describe why it is not as convincing.




Figure 4 is pretty convincing to me! Attached.


If that is the standard then it should be easy to present lots more data like that. Data collected in a randomized design and with all exercises fully described, as he has critiqued.




I think Schroth is going through some generational upgrading. And maybe this article we are discussing is already obsolete. It was written in 2009 but shows up as 2010 at the university web site for some reason. From the article:



As has been shown, Scoliosis Intensive Rehabilitation (SIR), in its original form can no more be regarded as being effective when rehabilitation times have been reduced to 3-4 weeks, only (Weiss and Goodall 2009). The incidence of surgery for the patients receiving this in-patient program (Weiss, Weiss and Schaar 2003) is comparable to out-patient approaches (Maruyama et al. 2003, Rigo, Reiter and Weiss 2003), although the different studies have patient samples which are not necessarily comparable. The development of such research means that more intensive out-patient approaches seem more appropriate when one considers; time efficiency and new teaching approaches including experiential learning (ISR), as described within the book on "Best Practice" treatment (Weiss 2007a). Therefore an in-patient program, such as SIR is today regarded as outdated. Actually three day intensive programs based on the "experiential learning" approach of ISR are provided in the US, UK and in Germany at the first authors centre.


[COLOR="Navy"]So actually - this article includes an author critique of SIR? Is that how you read it?


You could read that as a critique. But when are his exercises fully described like the critique he gave to the China RCT? They're described in his book. Why not the article? I don't mind someone wanting to publish this stuff in a book, but then you can't discount another study for omitting their exercise descriptions.

To be honest, I haven't read Weiss' recent work in the last ~ 3 years. He might do a better job of addressing the weaknesses of his studies than before. In fact, it's been a while since I've read anything of his. I'd be interested to read his up coming work.

[Pooka1]

To be honest, I haven't read Weiss' recent work in the last ~ 3 years. He might do a better job of addressing the weaknesses of his studies than before. In fact, it's been a while since I've read anything of his. I'd be interested to read his up coming work.

Not sure you have missed much. I brought Weiss's pubs to the attention of Quackwatch a bit ago...

http://www.scoliosis.org/forum/showthread.php?t=8179

N.B. This was the state of affairs as of the end of 2008.

[Pooka1]

But no effect on the natural progression of the curve?


You know, last I recall, I can't find where Schroth clearly claims to affect the natural progression. I see them making some noises that might be construed as affecting the natural progression but I don't think it is clear. I think they might only claim better appearance through posture modification and some correction/holding through lifelong PT.

Anyone know?

If they don't claim to permanently halt progression or permanently improve a curve then we can't gig them on not doing those things.

If they claim permanent halting or improvement and hide the fact hat life long PT is required then we can gig them on that.

[Ballet Mom]

There is an absolutely gorgeous ballerina at my daughter's studio who's dad has a noticeable kyphosis of his back. Also a handsome man. The ballerina's upper back had started to develop a noticeable kyphotic roundness last year as she was going through a growth spurt. Her shoulder blades were very noticeably winging out too. I told her mom that there were braces available that could help modify the kyphosis through her growth, especially suitable since the girl is home-schooled.

Apparently, they never looked into the orthopedists in order to get the brace. But the same ballet teacher who has worked with my daughter with her scoliosis and posture also gives privates to this girl. Over the past year, the ballet teacher has worked with this girl on her posture continuously. Amazingly, I can't even tell anymore that she has kyphosis. A couple of times when she's tired and not paying attention, I've seen her scapulas winging out recently. But the improvement is dramatic. I wouldn't even realize she had anything going on with her back most of the time.

There is certainly something going on with the ability to improve people's cosmetic outcome with exercises, stretches and posture. There is no doubt in my mind. I'm sure it's probably difficult to quantify in terms of scientific data. But to the people it helps, it has to improve their psyches immeasurably.

The fact that the Schroth program has lasted eighty years is a testament to the fact that it's providing people something worthwhile and isn't a bogus scam. Of course, ballet doesn't avoid rotations, they make huge rotational movements, so maybe not all of what Schroth does is required, but it's probably pretty hard to pin down exactly what it is that helps.

[Ballet Mom]

But no effect on the natural progression of the curve?

My son has actually managed to greatly improve the cosmetic look of his scoliosis/kyphosis through a mixture of PT and massage, so it's really holding the curve in place that we're interested in.

It would be nice to know if Schroth actually prevents the curves from progressing as an adult. I would send my daughter to Germany in a heartbeat if it could be shown to do that. My daughter already has a good cosmetic result from bracing and ballet and I too would like to help her prevent any possible progression.

I know there are professional ballet dancers that apparently use Schroth-type exercises to keep their curves from progressing. Obviously I have no idea what their x-rays look like, but they continue to dance so they couldn't have progressed much. Although most curves under 50 degrees won't progress anyway. But I suppose I could also have her do pilates in the future. I don't think my daughter is ready at this point to add more exercises to her daily routine! Not enough time in the day!

Let's hope that Weiss is able to do a study to show that it prevents future curvature. Most likely, though, it will be like all other things related to scoliosis and will help some people and not others. :(

I think most kids going through their growth spurt would be happy to have a good cosmetic result with their bracing. I really believe that those kids in their braces should be in some type of stretching and exercise program in order to help make their bracing a success.

[hdugger]

The fact that the Schroth program has lasted eighty years is a testament to the fact that it's providing people something worthwhile and isn't a bogus scam. Of course, ballet doesn't avoid rotations, they make huge rotational movements, so maybe not all of what Schroth does is required, but it's probably pretty hard to pin down exactly what it is that helps.

Yes, I think that's exactly true - many of the exercise methods have some parts that work and some that don't. If we could have someone with the background but without the financial motivation go through and figure out what pieces of each of them worked and what pieces were just fluff, it would be really great.

The SEAS people claim to be doing that, btw - they don't have an over-arching theory of exercise, they're just doing everything that has some evidence that it works.

[Pooka1]

Homeopathy has been around for over 200 years and is demonstrably patent nonsense.

Evolution denial has been around for over 100 years and is widely subscribed in the US at least but is demonstrably false.

Etc. etc. etc.

Thus you can't conclude from the length of time something has been around that it is not nonsense. And sometimes, the less evidence, the more nonsensical, the longer it sticks around.

[Ballet Mom]

Yes, I think that's exactly true - many of the exercise methods have some parts that work and some that don't. If we could have someone with the background but without the financial motivation go through and figure out what pieces of each of them worked and what pieces were just fluff, it would be really great.

The SEAS people claim to be doing that, btw - they don't have an over-arching theory of exercise, they're just doing everything that has some evidence that it works.

Good luck with that, it's apparently very difficult to find a scientist with an open mind these days.

I hope SEAS is successful finding out what IS successful with exercise. Unfortunately, I have low expectations that any good results will actually make it to the United States.

Maybe skevimc could get funding...he seems like a reasonable guy, and already interested in this subject.

[Pooka1]

Just noticed this typo in one of my posts...


"Mine"stuff was largely penetrating glimpses into the obvious. You missed nothing you probably didn't already know.

That should be...

"Meine" stuff was largely penetrating glimpses into the obvious." :)

[mamamax]

What sticks out to me is that he is apparently discounting studies for things like not having a good control group, but ignores the same fault in his own studies. Unless I'm unaware of a randomized study that he has published.

A good study will highlight the obvious faults in their own study and a good peer review process will ensure that the faults are well identified and discussed. It's a very important process in publishing. It shows that you have really thought seriously about your study and understand its limitations.

Thank you skevimc, you make me think more :-)

I'm not well versed in the publishing process. So please clarify if needed. As I understand it the levels are evidence based and progress from lowest to highest this way: (1) case studies (2) cohoert studies (3) prospective controlled studies (4) RCT and (5) Meta Analysis. I would like to know more about what each means in terms of the material presented. Maybe you could design a post outlining each for us. That would be valuable - and I think you would be a good source :-)

Is a randomized study the same as a prospective controlled study? I was looking through my Weiss files on my computer and came across Incidence of curvature progression in idiopathic scoliosis patients treated with scoliosis in-patient rehabilitation (SIR): an age- and sex-matched controlled study. (http://www.ncbi.nlm.nih.gov/pubmed/12745892) The full text is a good read! Sorry, I cannot upload the full text - our forum features are too limited. If anyone wants the full text PDF, just PM me and I'll get it to you.


Abstract


The goal of this study is to test the hypothesis that physiotherapy-based intervention can reduce incidence of progression in children with IS. Two independent patient groups matched by age and sex at diagnosis were analysed using the outcome parameter, incidence of progression (> or =5 degrees ). One group was untreated and the other received scoliosis in-patient rehabilitation (SIR). Incidence of progression in groups of untreated patients ranged from 1.5-fold (71.2% vs 46.7%) to 2.9-fold (55.8% vs 19.2%) higher than in groups of patients treated with SIR, even when SIR-treated groups included patients with more severe curvatures. Statistically, the differences were highly significant. Efforts to test the hypothesis that physical therapies addressing postural imbalance can be used effectively in the treatment of IS have been limited. The results of this study are consistent with the possibility that a supervized programme of exercise-based therapies can reduce incidence of progression in children with IS.


Is this more like what you are looking for? I don't think the article we are discussing was meant to be a prospective controlled study in and of itself, but serves as in introduction only to SSTR and The Best Practice Method.


Could be justified. Could also be an incorrect assessment. What exactly is he suggesting with that comment? That Negrini is presenting false data or that the skeletal age actually regressed? If he's just saying that the x-rays look funny, that alone doesn't discount the study as he is suggesting.

I can't say what he is suggesting, lacking a personal conversation about it. But taking what he published literally, it looks like he is saying that from his experience, the illustration is not credible because (for one thing): the Risser sign is more mature before treatment and pelvic width is bigger before treatment than after. And he also states that: .... the average patient from this sample according to the SOSORT guidelines would not need any treatment at all, the study would not seem worthwhile performing. So I walk away from that as seeing a professional opinion stated. Which I seem to see all the time in various studies that I read. These things do seem odd - and maybe deserving of some questioning?


Ok. But was there a problem or not? Was it a good study or not? It was an RCT with positive results. If you're going to present a 'review' and possibly critique the paper, it would be appropriate to make sure you're getting the story correct. Present the data and then describe why it is not as convincing.

Without more information - I can only look at that as it was presented: that there were translation problems. Wouldn't it be better to wait for a better presentation before attempting any critique in depth? In the article, Weiss does acknowledge it and even further states: this issue should be investigated more closely in the near future. So I'm guessing we will hear more about that at some future point. Seems he felt it should certainly not be ignored.


If that is the standard then it should be easy to present lots more data like that. Data collected in a randomized design and with all exercises fully described, as he has critiqued.

That Figure 4 is impressive isn't it? I've seen other presentations like that - Like the above study I referenced. So much of these presentations are available in full text articles - as well as many which have not yet even been translated (appearing in German Journals). I have not read all the articles given by those like the SEAS folks, hdugger has a lot more experience with the reading of those papers than myself - and it seems she has alluded to the fact that SEAS may still be largely in the experimental stage. Whereas Weiss (in my opinion) has this nailed in three generations of work - in speaking of which exercises (PT) work for any given curvature pattern (for which there are many indeed). So if Weiss were to demonstrate this - it would take a book - or many case studies for each curvature presentation. Would you agree?


You could read that as a critique. But when are his exercises fully described like the critique he gave to the China RCT? They're described in his book. Why not the article? I don't mind someone wanting to publish this stuff in a book, but then you can't discount another study for omitting their exercise descriptions.

Thanks - that is how I read it also. Again, it would take a book (I think) to fully describe the many many exercises, specific to all the various curvature patterns, which also include up to four breathing techniques. Do you have a copy of The Best Practice Method? Kind of sounded like you did. Man, I am looking forward to my copy. I don't have access to the China RTC, but if they omitted even a brief overview - I guess that could be a justifiable criticism. I note Weiss does give a brief overview even in the university article from 2009. I don't know. I do know authors seem to criticize each other fairly consistently - and sometimes harshly.


To be honest, I haven't read Weiss' recent work in the last ~ 3 years. He might do a better job of addressing the weaknesses of his studies than before. In fact, it's been a while since I've read anything of his. I'd be interested to read his up coming work.

His writing is profoundly prolific - one would be hard pressed to keep up in one language let alone two :-) In trying to follow along, I find he is ever evolving and improving his method. I'm anxious to see the upcoming myself.

I have some thoughts and questions about RTC studies. Firstly, it looks like Weiss is not a big fan of RTC studies in regards to bracing. He outlines why in an oral presentation given at SOSORT found Here. (http://www.sosort-lyon.net/index.php?option=com_content&view=article&id=77&Itemid=96&f82534ea76dc175ea0001913a450230d=18a3db06a2e0ef57e 0633b4bda859191) It is beneath Lori Dolan's presentation (also a good listen).

What are your thoughts on that? I am truly interested on what your take is.

As for RTC studies in general - I tried some quick Google searches, looking for RTC studies on scoliosis surgical techniques and could not find any. Why is that? Maye they exist but I don't know how to find them?

I'm just a lay patient and know nothing about the politics of the game, but if it is lack of RTC studies that is keeping a method such as Weiss' from finding implementation into our established medical system - when there does exist evidence galore in Europe, then I suppose, as is said at the space center - Houston, we have a problem.

[mamamax]

There is an absolutely gorgeous ballerina at my daughter's studio who's dad has a noticeable kyphosis of his back. Also a handsome man. The ballerina's upper back had started to develop a noticeable kyphotic roundness last year as she was going through a growth spurt. Her shoulder blades were very noticeably winging out too. I told her mom that there were braces available that could help modify the kyphosis through her growth, especially suitable since the girl is home-schooled.

Apparently, they never looked into the orthopedists in order to get the brace. But the same ballet teacher who has worked with my daughter with her scoliosis and posture also gives privates to this girl. Over the past year, the ballet teacher has worked with this girl on her posture continuously. Amazingly, I can't even tell anymore that she has kyphosis. A couple of times when she's tired and not paying attention, I've seen her scapulas winging out recently. But the improvement is dramatic. I wouldn't even realize she had anything going on with her back most of the time.

There is certainly something going on with the ability to improve people's cosmetic outcome with exercises, stretches and posture. There is no doubt in my mind. I'm sure it's probably difficult to quantify in terms of scientific data. But to the people it helps, it has to improve their psyches immeasurably.

The fact that the Schroth program has lasted eighty years is a testament to the fact that it's providing people something worthwhile and isn't a bogus scam. Of course, ballet doesn't avoid rotations, they make huge rotational movements, so maybe not all of what Schroth does is required, but it's probably pretty hard to pin down exactly what it is that helps.

This is all just ... to cool!!! That teacher - worth her weight in gold. Proving once again - such things, can be done :-)

[mamamax]

But no effect on the natural progression of the curve?

My son has actually managed to greatly improve the cosmetic look of his scoliosis/kyphosis through a mixture of PT and massage, so it's really holding the curve in place that we're interested in.

Figure 4 looks to have effected some natural history to me :-) And it seems this one example is typical of expected outcomes. The young woman in her 20's that I correspond with in Germany, who is bracing under someone trained by Weiss and using Schroth as was taught to her in the clinic while Weiss was there - has had astounding results. I'll write her and ask if it is ok to share her images.

Like your son, I'm more interested in keeping things from progressing than I am cosmetics. I would like to do PT that is specifically designed for my curvature pattern, vs some generalized exercise that may in fact make matters worse for me unknowingly. Of course, a bit of improved cosmetics wouldn't suck :-) Congrats bty & may the future be one of continued success!

[Ballet Mom]

This is all just ... to cool!!! That teacher - worth her weight in gold. Proving once again - such things, can be done :-)

She is most definitely worth her weight in gold. Her students all think she's a miracle worker! And so do the moms... :) A very smart lady and she comes up with an exercise to improve anything that needs to be improved!

This ballerina will definitely go pro too, if she continues with her successful control of her kyphosis. She was already asked this spring to attend a residential program at a European ballet school, but is waiting for a better offer in this coming year. I suspect she'll get it too because her improvement has been amazing. She has legs that go on forever!

[Ballet Mom]

Figure 4 looks to have effected some natural history to me :-) And it seems this one example is typical of expected outcomes.

Amazing, Figure 4 looks almost exactly like the results my daughter has had. I think actually that my daughter's right scapula isn't quite as noticeable as this young lady's in the final picture, but it most definitely did look like the second picture at one point. It would be hard to say for sure unless my daughter had a picture in the exact same setting and lighting. I can absolutely vouch for the fact that those results can be obtained, in my daughter's case with nighttime bracing and ballet.

Good news for a lot of kids.

[mamamax]

Congratulations Ballet Mom .... your experience, makes my heart smile - big time! May the journey be of continued success :-)

[Ballet Mom]

Congratulations Ballet Mom .... your experience, makes my heart smile - big time! May the journey be of continued success :-)

Thanks mamamax! I'm very happy too.

I looked at Figure 4 again, and I actually believe that when my daughter was first diagnosed, she may not have had quite as much decompensation as this girl (hard to remember), but my daughter had a much more "windswept" look to the right and her rib hump was more pronounced. Unfortunately, I never even thought to take pictures. Darn. But very similar, a 35 degree scoliosis reduced to 29 degrees and a big reduction in the rotation. And a huge improvement in the cosmesis.

[skevimc]

Maybe skevimc could get funding...he seems like a reasonable guy, and already interested in this subject.

I'm glad you see me as reasonable. :) I'm definitely interested in this area of research. And specifically the science behind rehabilitation from a muscle stand point. We'll see how the next several years go. There's definitely room and need for the science. But we'll have to see what kind of money is there. Not for me personally, but to do the research.


Thank you skevimc, you make me think more :-)

I'm not well versed in the publishing process. So please clarify if needed. As I understand it the levels are evidence based and progress from lowest to highest this way: (1) case studies (2) cohoert studies (3) prospective controlled studies (4) RCT and (5) Meta Analysis. I would like to know more about what each means in terms of the material presented. Maybe you could design a post outlining each for us. That would be valuable - and I think you would be a good source :-)


There are papers published on the rating levels of studies. A double or single blind prospective RCT is definitely the gold standard. This means you have a treatment and you take the next 1000 patients that walk through the door and randomly assign them to one of two or three groups. One group gets the experimental treatment and the other groups get either no treatment or a placebo or the currently accepted standard of care. The groups depend heavily on what is being studied.

Double blind means that neither the patient or the doctor/researcher knows what treatment group the patient is in. For some studies, like exercise studies, this can be understandably hard to do. But it's definitely possible to keep the physician in the dark. The blinding is important because it protects the study from bias. Even the most careful researcher can be influenced by bias. It's not even malicious or trying to be intentionally misleading. It can be done subconsciously. It can also be done overtly which is severely unethical.

I'll kick around the idea you suggested of posting a 'guide to research studies'. I'm actually working on a course on that very thing and it's specifically aimed at the lay population. to be continued.... ?




[COLOR="Navy"]Is this more like what you are looking for? I don't think the article we are discussing was meant to be a prospective controlled study in and of itself, but serves as in introduction only to SSTR and The Best Practice Method.

That Weiss study is prospective in nature but might not be appropriately matched. Matching to age and gender is a start, but with scoliosis, matching for curve size and type is also extremely important.

I will think about the rest of your questions. I honestly haven't carefully read the articles from Weiss so I don't feel able to defend my overall point right now. My perception of the article was that it was full of his articles and his results but lacked results from other papers.

This is an example of what I see as being a good presentation of various studies.

Negrini S, Fusco C, Minozzi S, et al. Exercises reduce the
progression rate of adolescent idiopathic scoliosis: Results of a
comprehensive systematic review of the literature. Disabil Rehabil.
2008;30(10):772-785.

[hdugger]

Kevin, can I ask you your overall impression of the SEAS folk? In general, their papers seem pretty sound to me, but I'm always suspicious of people who are running their own clinics with a proprietary protocol.

Do they have a decent reputation in the field? Or are they eyed with some suspicion?

[skevimc]

Kevin, can I ask you your overall impression of the SEAS folk? In general, their papers seem pretty sound to me, but I'm always suspicious of people who are running their own clinics with a proprietary protocol.

Do they have a decent reputation in the field? Or are they eyed with some suspicion?

I believe they have a very good reputation within the field. I am just starting to read some of their papers, like the one I linked to. He also published a landmark paper (for me at least) when he stated, that "while no evidence exists that exercise influences the natural history, there is also no good evidence to suggest it doesn't". This was a big statement because the dogma at the time was pretty set that exercise does no good. But that dogma wasn't based on solid evidence. For me, it clearly stated what I had felt for a while.

The perception I get is that, while there may be a proprietary clinic, they are trying to base it on documented studies. So at least their starting point is from "what has been reasonably tested and seems to work" instead of "let's prove our method works while discrediting all others". Again, I haven't read all of their stuff so I don't know if they are pushing one type of therapy over another. I mean the name alone makes me like it "Scientific Exercise Approach to Scoliosis". Love it!

[Pooka1]

He also published a landmark paper (for me at least) when he stated, that "while no evidence exists that exercise influences the natural history, there is also no good evidence to suggest it doesn't". This was a big statement because the dogma at the time was pretty set that exercise does no good. But that dogma wasn't based on solid evidence. For me, it clearly stated what I had felt for a while.

This sounds very plausible. It may be that there was never enough folks with relevant research training (or those who booted themselves up on how to do research) who applied themselves to the problem. As for lack of progress on showing efficacy of other conservative treatments, I think this is just a result of how difficult medical research is, especially with such an intrinsically variable condition like scoliosis. The comment you posted about another researcher advising you not to go into scoliosis research seems well taken when reading some of these published papers. Critiquing some of them is like shooting ducks in a barrel until you realize how the researchers' hands are tied and how much variation they are dealing with. I admire the resolve of even starting one of these studies in the first place.

The field seems wide open to score big. And it would be a big score to obviate fusion surgery using PT. I think solid evidence of that would get folks to exercise who otherwise would never stick with it.

I think it would be a Nobel contender (in physiology or medicine) if not a winner if it happens.

[skevimc]

This sounds very plausible. It may be that there was never enough folks with relevant research training (or those who booted themselves up on how to do research) who applied themselves to the problem.


This is certainly part of the reason. The other is that 'exercise' as we know it by today's standards is NOTHING like what it was when the original studies were done that set the dogma. The 'exercises' used were described as 'general calisthenics' 'push-up, sit-ups, side bends and the like'. No kidding exercise wasn't found to be effective. It's staggering what was unknown about muscle physiology that is now taken for granted. (And ten years from now I'll say the same thing about us today. I love science so much. :))





As for lack of progress on showing efficacy of other conservative treatments, I think this is just a result of how difficult medical research is, especially with such an intrinsically variable condition like scoliosis. The comment you posted about another researcher advising you not to go into scoliosis research seems well taken when reading some of these published papers. Critiquing some of them is like shooting ducks in a barrel until you realize how the researchers' hands are tied and how much variation they are dealing with. I admire the resolve of even starting one of these studies in the first place.


I sincerely appreciate this comment.

[mamamax]

skevimc -

Thank you for that 2008 Negrini (et al) reference. (http://www.ncbi.nlm.nih.gov/pubmed/18432435) An excellent review of the literature in terms of of specific exercises to reduce the progression of AIS. Who did the RCT study? I only have access to the Abstract at the moment but a few things really jumped out at me:


19 papers considered included 1654 treated patients and 688 controls.


The highest-quality study (RCT) compared two groups of 40 patients, showing an improvement of curvature in all treated patients after six months.


We found three papers on Scoliosis Intensive Rehabilitation (Schroth), five on extrinsic autocorrection-based methods (Schroth, side-shift), four on intrinsic autocorrection-based approaches (Lyon and SEAS) and five with no autocorrection (three asymmetric, two symmetric exercises).


CONCLUSION: In five years, eight more papers have been published to the indexed literature coming from throughout the world (Asia, the US, Eastern Europe) and proving that interest in exercises is not exclusive to Western Europe. This systematic review confirms and strengthens the previous ones. The actual evidence on exercises for AIS is of level 1b. (http://www.cebm.net/index.aspx?o=1025).


The previous level of evidence was 2a (2003/2004)


That is surely encouraging. Would like to read the full text.

I see Weiss/Goodal published a paper the same year The treatment of adolescent idiopathic scoliosis (AIS) according to present evidence - A systematic review. (http://www.ncbi.nlm.nih.gov/pubmed/18418338) In this abstract are some interesting observations from the viewpoint of reviewing all available treatment options:


The aim of this paper was to provide a synopsis of all treatment options in the light of evidence based practice (EBP). A systematic review was carried out using the most encompassing databases available. Literature has been searched for the outcome parameter ''rate of progression'' and only prospective controlled studies that have considered the treatment versus the natural history have been included.


One prospective controlled study was found to support scoliosis in-patient rehabilitation (SIR). One prospective multi-centre study, a long-term prospective controlled study and a meta-analysis have been found to support bracing. No controlled study, neither short, mid nor long-term, was found to reveal any substantial evidence to support surgery as a treatment for this condition.


In light of the unknown long-term effects of surgery, a randomised controlled trial (RCT) seems necessary.


Due to the presence of evidence to support conservative treatments, a plan to compose a RCT for conservative treatment options seems unethical.


But it is also important to conclude that the evidence for conservative treatments is weak in number and length.


Reading the full text of that this evening.

The SEAS study/Full Text (http://www.scoliosisjournal.com/content/3/1/20) proves promising from the adult point of view in regards to postural rehabilitaion which I know is possible because I personally experienced it with a bracing technique designed to serve as PT. From the SEAS study:


This case opens the possibility that when adult scoliosis aggravates it is possible to intervene with specific exercises not just to get stability, but to recover last years collapse. We hypothesize that this reduction of Cobb degrees is due to a reduction of the postural collapse, that in turn can decrease the chronic asymmetric load on the spine and, in the long run, reduce the progression.


In this case report, we hypothesize that the worsening before the beginning of exercise therapy was due to an inadequacy of antigravitary trunk muscles due to all the years B.I. used casts and braces. During those years, she unfortunately never exercised to maintain or to restore these muscles. The only sport she played was swimming, which doesn't stress such muscles. With exercises, she could completely recover the worsening of the last five years.


Obviously exercises can lead to results other than stabilization of the curve, including pain, postural control, balance, strength, but in the indexed literature no data have been published on this topic. There are few works in literature showing it is possible improving the curvature in adult scoliosis with exercises, but no study has a long follow-up. The only case report with a long follow-up showed stability over time [25]. In our opinion, the recovery of the postural collapse we obtained in this case can possibly reduce the risk of future worsening, aside from the absolute decrease of the curves we had. In fact, the functional, cosmetic and psycho-social damages caused by scoliosis are directly proportional to curve magnitude [26,27], so any improvement over time must be considered a remarkable success in adult scoliosis therapy.


Coming full circle, I'm intrigued by The Best Practice Method because its aim is not to exercise over a course of a lifetime in order to maintain positive results.

[skevimc]

I have some thoughts and questions about RTC studies. Firstly, it looks like Weiss is not a big fan of RTC studies in regards to bracing. He outlines why in an oral presentation given at SOSORT found Here. (http://www.sosort-lyon.net/index.php?option=com_content&view=article&id=77&Itemid=96&f82534ea76dc175ea0001913a450230d=18a3db06a2e0ef57e 0633b4bda859191) It is beneath Lori Dolan's presentation (also a good listen).

What are your thoughts on that? I am truly interested on what your take is.

I'm just a lay patient and know nothing about the politics of the game, but if it is lack of RTC studies that is keeping a method such as Weiss' from finding implementation into our established medical system - when there does exist evidence galore in Europe, then I suppose, as is said at the space center - Houston, we have a problem.




[COLOR="Navy"]


In light of the unknown long-term effects of surgery, a randomised controlled trial (RCT) seems necessary.


Due to the presence of evidence to support conservative treatments, a plan to compose a RCT for conservative treatment options seems unethical.


But it is also important to conclude that the evidence for conservative treatments is weak in number and length.
[/LIST]


I struggle with the concept of RCT's as well. I understand why they are needed and I understand their strength from a statistical point of view. But I personally don't think they are a good idea to do when you have limited resources and/or patients to enroll. I also am if-y when it comes to a treatment versus the natural history of a disease. Particularly if there is already a clinically accepted alternative. I usually don't 'win' discussion on this with colleagues but I also think that there's a bit of dogma involved with this as well. Personally, I think blinding as many people as possible in the study is the most important thing.

That being said, what Weiss wrote above displays my overall critique. He wants to apply the RCT design to surgeries but not to conservative therapies. He places requirements/critiques on certain treatments and not on others. Also, he says that there isn't any long term data on surgical outcomes and that isn't true. There are several really nice studies following surgical and bracing patients for at least 20 years.

Now I'll reiterate that I think Schroth is a good therapy. But I also think other treatments have validity as well. I'm very dedicated to rehab in general no matter what the disease or condition. I want to see the best science done.

[mamamax]

I struggle with the concept of RCT's as well. I understand why they are needed and I understand their strength from a statistical point of view. But I personally don't think they are a good idea to do when you have limited resources and/or patients to enroll. I also am if-y when it comes to a treatment versus the natural history of a disease. Particularly if there is already a clinically accepted alternative. I usually don't 'win' discussion on this with colleagues but I also think that there's a bit of dogma involved with this as well. Personally, I think blinding as many people as possible in the study is the most important thing.

That being said, what Weiss wrote above displays my overall critique. He wants to apply the RCT design to surgeries but not to conservative therapies. He places requirements/critiques on certain treatments and not on others. Also, he says that there isn't any long term data on surgical outcomes and that isn't true. There are several really nice studies following surgical and bracing patients for at least 20 years.

Now I'll reiterate that I think Schroth is a good therapy. But I also think other treatments have validity as well. I'm very dedicated to rehab in general no matter what the disease or condition. I want to see the best science done.


Yes :-)

Reading the Scoliosis Journal literature, in reference to RCT studies, is almost like watching a conversation (or "debate") unfold within the literature itself. Historically, first mention of it , begins with Negrini in 2006 (http://scoliosisjournal.com/content/1/1/14)as a suggestion towards support of evidence based medicine relative to patient choice of treatment. Next mention of RCT studies in the Scoliosis Journal comes from the University Medical Center Rotterdam, Rotterdam, The Netherlands/2007. (http://scoliosisjournal.com/content/2/S1/S18) Here the authors reference the first Dutch led RCT study - using bracing and a controlled treatment trial. The same authors from the Netherlands publish (the same year) an Editorial in The Pediatrics Review (http://pediatrics.aappublications.org/cgi/content/full/121/6/1297): where they give Weiss a little heat in reference to his 1994 publication: Application of the case-control method in the evaluation of screening. The Netherlands editorial in The Pediatrics Reviews seems to almost make a case against bracing and further alludes to the fact that (in their opinion), bracing studies would be best conducted by surgeons (as I read it). Following these three publications, Weiss publishes an Editorial in the Scoliosis Journal (http://scoliosisjournal.com/content/2/1/19) on the topic of RTC studies relative to scoliosis.

In reading all four of these articles, I see a debate within the literature itself. And basically, I think, Weiss is saying if RCT studies are going to be applied to bracing treatments - then they should also be applied to all treatments, including surgical treatments. I can also see how reading Weiss, out of historical context, could lead to some misunderstanding.

It is all quite interesting.

In his editorial, Weiss makes a good case as to how RCT studies do not apply to scoliosis - based upon the standardized criteria established by CEBM (http://www.cebm.net/?o=1011) (The Centre for Evidence Based Medicine). This editorial bty turns out to be a very good outline of EBM guidelines.

Case against RCT relative to scoliosis:




Although randomized controlled trials (RCT's) provide the highest evidence the application of this study design is unrealistic for complex disorders like scoliosis. While pharmacological studies are the main field for RCT's until now no RCT on treatment outcomes for scoliosis is available.

In pharmacological studies one can easily standardise the treatments (drugs) to be investigated. Body weight of the patients and dosage of drugs can easily be measured [12].

Scoliosis on the other hand is not a uniform condition. Even the subset of patients suffering from Adolescent Idiopathic Scoliosis (AIS) appears to include multiple variations in curve pattern, maturity, curve stiffness and sexual differences all influencing the outcome of treatment [13]. Recently claims have been made for an RCT on bracing [11,14,15], but the question remains to be answered; what brace, with what set amount of time, should be monitored and in which particular patient? It seems even difficult to define what exactly may be referred to as a "brace" as there is a wide variability of applications (Fig. 1). Treatment and subject treated are of such high variability that an RCT for bracing seems to be a very complex task.

His ethical viewpoint of RCT & scoliosis:




In the light of this evidence already available, an RCT is not only a complex task but an unethical one. To allow growing patients to continue without conservative treatment (a control group) until nothing except surgical intervention can help them, is completely unethical. Especially when one considers the problems with surgery, such as; primary risks; a re-surgery rate, which might be higher than 30% in the long-term [17-19] and future complications [17]. This type of approach cannot be regarded as patient-oriented. This is why the SOSORT offers clinicians and scientists to take part in prospective controlled studies on bracing. Within this society there is a unique opportunity to test different bracing approaches against each other in order to find the "Best Practice" of bracing. This will enable clincians in the near future the opportunity to give their conservatively treated patients the best possible advice and offer the best possible treatment in a more standardized way. Research on living patients should only be done in order to develop a useful treatment, this is why we need to be able to measure brace quality. We know that in-brace correction and compliance are the two main determinants of outcome [16,20,21]. Therefore in-brace correction might serve as a measure for brace quality and compliance as a measure for quality of management. Efforts have to be made to improve both of these.

Unfortunately many studies on bracing, mainly coming from the US, do not attempt to find ways to improve this measurement [10,11,14,22]. Whether a brace works or not seems to depend upon the fate of the individual patient and not on brace quality. Some SRS Surgeons introduced the term "brace responder" or "non-responder" [23] as if it was the patients fault when there is no successful outcome. No one attempts to explain why some patients are "non-responders" and with another brace the same patients are "responders" [24] (Fig. 2).

His vision of Scoliosis Journal & surgery:




To help to develop the body of research regarding the outcome of surgery and to highlight the problems of treatment indications in patients with AIS and other spinal deformities we would like to open the Scoliosis Journal to papers that discuss surgical procedures.

One of our aims is to improve patients' safety in surgery by producing evidence-based information that can be used to develop guidelines that could aid both professionals and patients in making decisions about surgical and conservative options.

Within this society we have well known spinal surgeons who are specialists in conservative management of scoliosis as well. This is why I am confident that to include papers with surgical content, is a step towards an equilibrated and balanced view on scoliosis management.

So in reading (historically), it becomes clearer why some statements are made in the literature (in that they are often retorts) and also how sometimes when not read within historical context - they may be misunderstood. As a lay patient, I can see both sides of the fence, RCT studies are scientifically valuable - and difficult if not inappropriate to bracing. The debate will no doubt continue, and be supported on both sides by some very well educated people on the subject.

Do I, as a patient care about these debates? No. As a patient, my needs are results based in terms of well written and well presented studies and when possible, first hand knowledge of other patients who have experienced successful treatment.

Over the last year, a bracing method brought me through the most difficult time in my life (in dealing with scoliosis). There were no RCT studies on my chosen method at the time, there still are none. My medical doctor however, did read a few well presented studies on my chosen method, and based on those, wrote an Rx for me. So as a patient, if I wait for RCT studies, or if my medical doctor waits for RCT studies, before making a medical decision - we will be doing much waiting and less treating.

Agree with you skevimc, there are appearing many non surgical methods showing promise. None of them are something easily accessed by this patient. Currently, only one of them seems well designed for use in hospital affiliated physical therapy departments - and that is the Schroth-based SSTR which steps beyond offering lifetime exercise in order to maintain benefits - and where seems found more hope than all of the current studies in the literature (in my opinion) for both adolescents and adults. I am so longing to see the upcoming SSTR study which will be available in a few months.

I applaud your efforts in the area of rehabilitation skevimc, somehow sense you will also be making contributions :-)

Long term data on surgical outcomes - I suppose I must now go look at the historical context of that. Maybe more revealing also.

[Ballet Mom]

Wow, I have whiplash from the 180 degree turnaround! From scam to Nobel prize in record time! :D Personally, I think anyone who wins a Nobel prize for physical therapy treatment of scoliosis would have to share it with the Europeans....I think they have at least eighty years on the Americans...

Who knows...I think Dingo might end up beating everyone to the Nobel...hee hee! :D :cool:

[Ballet Mom]

mamamax,

I agree with Weiss on this issue of randomized controlled trials. And in fact, most parents do also, seeing as Braist ended up having to get rid of that little problem of RCT in order to possibly get enough patients enrolled to do a study.

I think RCT is going to be an issue in a lot of medical areas. Even Linda was unhappy when they introduced it into a surgical trial for adult scoliosis.

Randomized controlled trials are nice in theory until you are actually the patient being randomized and losing control of your treatment options. Welcome to the real world, statisticians.

[Pooka1]

the standardized criteria established by CEBM (http://www.cebm.net/?o=1011) (The Centre for Evidence Based Medicine).

That is a very interesting site. I found this there...

http://www.ncbi.nlm.nih.gov/pubmed/17303884?dopt=AbstractPlus


BMJ. 2007 Feb 17;334(7589):349-51.
When are randomised trials unnecessary? Picking signal from noise.

Glasziou P, Chalmers I, Rawlins M, McCulloch P.

Centre for Evidence-Based Medicine, Department of Primary Health Care, University of Oxford, Oxford OX3 7LF. paul.glasziou@dphpc.ox.ac.uk

Comment in:

* BMJ. 2007 Mar 3;334(7591):440.
* BMJ. 2007 Mar 3;334(7591):440.

Abstract

Although randomised trials are widely accepted as the ideal way of obtaining unbiased estimates of treatment effects, some treatments have dramatic effects that are highly unlikely to reflect inadequately controlled biases. We compiled a list of historical examples of such effects and identified the features of convincing inferences about treatment effects from sources other than randomised trials. A unifying principle is the size of the treatment effect (signal) relative to the expected prognosis (noise) of the condition. A treatment effect is inferred most confidently when the signal to noise ratio is large and its timing is rapid compared with the natural course of the condition. For the examples we considered in detail the rate ratio often exceeds 10 and thus is highly unlikely to reflect bias or factors other than a treatment effect. This model may help to reduce controversy about evidence for treatments whose effects are so dramatic that randomised trials are unnecessary.

This is preciously the reason why randomized trials are always going to be necessary for bracing and PT. There has never been a dramatic effect that stood. Moreover, the signal to noise ratio is always so low even in well-designed trials because the noise (intrinsic variability) of scoliosis is known to be huge.

Showing efficacy is one thing. Another is these researchers have to contend with the over-treatment aspect also which has been estimated in at least one study to be ~70%. Bracing is a difficult treatment and they have their work cut out to show it is worth it for a given patient. In fact that is not likely to ever be shown until they get a handle on what drives the large variability.

For PT, the issue seems to be just getting folks to commit. Again, unless they can eventually show that a given patient doing X number of exercises Y number of times a week for Z months will avoid fusion surgery for life, I doubt some people will try.

It is very easy to see why Dr. McIntire's adviser warned him not to do scoliosis research. And the more I read about it, the more it seems to unfold that way.

[mamamax]

mamamax,

I agree with Weiss on this issue of randomized controlled trials. And in fact, most parents do also, seeing as Braist ended up having to get rid of that little problem of RCT in order to possibly get enough patients enrolled to do a study.

I think RCT is going to be an issue in a lot of medical areas. Even Linda was unhappy when they introduced it into a surgical trial for adult scoliosis.

Randomized controlled trials are nice in theory until you are actually the patient being randomized and losing control of your treatment options. Welcome to the real world, statisticians.

Ballet Mom - Yep. Theory and practice are entirely two different things. RCT seems not appropriate in surgical or non surgical methods of scoliosis treatment - as BrAist has discovered. I wonder what happened with that surgical trial - hope they were able to toss it out the window as well. Your one-liner .... Priceless :D

[LindaRacine]

I think RCT is going to be an issue in a lot of medical areas. Even Linda was unhappy when they introduced it into a surgical trial for adult scoliosis.


Don't think I said I was unhappy. And, interestingly, I was thinking at it from both approaches. I can't imagine that you would agree to put your child through surgery unless it became absolutely necessary, and I can't imagine others considering not having surgery. While we all want the data from RCTs, there aren't that many people who are actually willing to let the toss of a coin determine their treatment.

[mamamax]

While we all want the data from RCTs, there aren't that many people who are actually willing to let the toss of a coin determine their treatment.

Yes - that is it in a nutshell (in addition to the ethics), and what it all boils down to from the patient perspective. Agree 100%

Great signature bty :-)

[mamamax]

Reading of the Literature can truly be confusing when historical context and definitions are not obvious. So, as lay patients and parents we must often haul out dictionaries, etc. After all, it seems to me, the Literature or Body of Evidence is not written for patients and parents, but experts in the field. Lacking definitions, and historical context has proven to give cause for misunderstanding - making the reading of the literature something more complex than the simple scanning of any one article.

Just posting this for myself and others as we attempt to unravel publications that are becoming ever more available to us. The following is a brief outline of the purpose, terms, and definitions that are standard use in the literature as provided by the Center for Evidence Based Medicine ... as well as a brief explanation as to how this relates to various treatments available for scoliosis. The Source: Orthopedic Surgeon, Hans-Rudolph Weiss - Editorial, Scoliosis Journal 2007. (http://scoliosisjournal.com/content/2/1/19)



The Centre for Evidence Based Medicine (http://www.cebm.net/?o=1011) (EBM) [1] provides guidelines to spread the knowledge about EBM and its use. There is a special hierarchy of evidence based knowledge:




1. Smallest evidence is provided by "expert opinion"

2. Case reports/case series

3. Un-controlled studies

4. Controlled studies

5. Randomized controlled studies (RCT) and

6. Meta analyses from RCT



The quality and types of evidence help to segregate research into levels. They are graded (IV [lowest] – I [highest]) and from those levels recommendations for treatment are derived (Grade D [lowest] – Grade A [highest]).

Grade B recommendations for conservative treatment of scoliosis are justified. There are prospective controlled studies (level II) [2-4] and enough data from level III or IV, which are generally consistent [5] when taking into account studies from central Europe or Asia [6-9]. These levels of evidence seem not to have been reached in the United States [10,11].

Although randomised controlled trials (RCT's) provide the highest evidence the application of this study design is unrealistic for complex disorders like scoliosis. While pharmacological studies are the main field for RCT's until now no RCT on treatment outcomes for scoliosis is available.

In pharmacological studies one can easily standardise the treatments (drugs) to be investigated. Body weight of the patients and dosage of drugs can easily be measured [12].

Scoliosis on the other hand is not a uniform condition. Even the subset of patients suffering from Adolescent Idiopathic Scoliosis (AIS) appears to include multiple variations in curve pattern, maturity, curve stiffness and sexual differences all influencing the outcome of treatment [13]. Recently claims have been made for an RCT on bracing [11,14,15], but the question remains to be answered; what brace, with what set amount of time, should be monitored and in which particular patient? It seems even difficult to define what exactly may be referred to as a "brace" as there is a wide variability of applications (Fig. 1). Treatment and subject treated are of such high variability that an RCT for bracing seems to be a very complex task.

[mamamax]

SSTR (Scoliosis Short Term Rehabilitation) could be viewed as a new method in scoliosis rehabilitation, and as one that becomes the current generation of PT specific to curvature pattern - previous generations being The Schroth Method, and Scoliosis In-Patient Rehabilitation (SIR). While The Schroth Method, and SIR have not necessarily been eliminated, SSTR becomes a refinement based on The Best Practice Method (developed by Dr. Weiss) and a method seemingly well designed for hospital affiliated Physical Therapy departments - and a method useful to both those patients seeking non surgical rehabilitation, as well as for certain surgical patients for whom pain has become an unresolved issue. As I currently understand it, this method uses both bracing (for adolescents, and for some adults where pain is an issue) and exercises which are designed to not be required over the course of a lifetime in order to maintain results and benefits. The literature on this is forthcoming over the next few months.

SSTR uses two braces. One is the Chêneau light™


A demonstration of the step-by step fitting
(http://www.youtube.com/user/BibiDocWeiss#p/a)

[mamamax]

<snip>

Also, he says that there isn't any long term data on surgical outcomes and that isn't true. There are several really nice studies following surgical and bracing patients for at least 20 years.

Now I'll reiterate that I think Schroth is a good therapy. But I also think other treatments have validity as well. I'm very dedicated to rehab in general no matter what the disease or condition. I want to see the best science done.

I think this may be one of the most often mis-quoted Weiss-isms :-)

Does he state that there is no long term data - or does he state that the data is questionable? There is a difference.

Personally, I think that until such time as "data" becomes required vs voluntary ... the evidence remains, questionable. From the infamous (and very detailed) 2008 debate: Adolescent idiopathic scoliosis – to operate or not? A debate article
(http://www.pssjournal.com/content/2/1/25)


No evidence for surgery in prospective controlled trials
There are in fact prospective controlled studies comparing the outcome of patients with AIS treated conservatively with a series of patients treated surgically [48,69-73]. Nevertheless no study is available comparing surgery to the natural history prospectively [74-76]. The Gothenburg's papers do not offer any evidence that the long-term outcome of surgery is superior to the long-term outcome of patients treated conservatively [48,69-73].

The studies relating to HRQL/SRS-22 questionnaires do not demonstrate differences between the two groups of patients [70], pain and function do not differ [48,73], nor does degeneration [71], sexual function [72] or restrictive ventilation disorder [69]. As early as 1973, Paul Harrington envisioned in the future a common database or registry of all Scoliosis Research Society (SRS) members' patient's treatment results [51]. Unfortunately the SRS failed to follow this vision until recently. Instead of achieving long-term evidence for surgical treatment on a higher level and addressing the problems after surgery to attempt to improve patient safety, the surgical community is presenting large numbers of papers describing HRQL after surgery and related research [26,77-81].

The problem with such studies is that they lack validity as they do not investigate the actual signs of scoliosis or the post-surgery symptoms of the patient [82]. Those studies containing psychological questionnaires may be compromised by the dissonance effect [74-76,82,83].

[skevimc]

In light of the unknown long-term effects of surgery, a randomised controlled trial (RCT) seems necessary.




[QUOTE=mamamax;106473][COLOR="Navy"]I think this may be one of the most often mis-quoted Weiss-isms :-)

Does he state that there is no long term data - or does he state that the data is questionable? There is a difference.



I was referring to the above quote. Saying "In light of the unknown long-term effects" implies to me that no data exists.

After reading the other info I think I can understand the point he is trying to make. He's saying that crossing out conservative studies because they lack controlled trials against the natural history of the curve is an unfair critique because there are no trials comparing the natural history to surgery either??

[LindaRacine]

Sharon...

Well said.

I'm gradually becoming convinced that even long-term studies aren't all they're cracked up to be in terms of scoliosis. This is the latest in studies out of the Swedish group once led by Alf Nachemson:

http://www.ncbi.nlm.nih.gov/pubmed/20038869

Health-related quality of life in untreated versus brace-treated patients with adolescent idiopathic scoliosis: a long-term follow-up.

Danielsson AJ, Hasserius R, Ohlin A, Nachemson AL.

Department of Orthopedics, Sahlgrenska University Hospital, Göteborg, Sweden. danielsson.aina@telia.com
Abstract

STUDY DESIGN: The previous Scoliosis Research Society brace study (JBJS-A, 1995) included patients with adolescent idiopathic scoliosis (AIS) with moderate curve sizes (25 degrees -35 degrees). The Swedish patients in this study were examined in a long-term follow-up.

OBJECTIVE: The aim was to analyze and compare quality of life in adulthood between AIS patients who were only observed or treated with a brace during adolescence.

SUMMARY OF BACKGROUND DATA: Quality of life as measured by the SRS-22 has not previously been presented for adult untreated AIS patients.

METHODS: Forty patients who were only observed (due to a curve increase of less than 6 degrees until maturity), and 37 brace-treated patients attended the complete follow-up, including clinical and radiologic examination, and answered 2 quality of life questionnaires (SRS-22 and Short Form-36 [SF-36]).

RESULTS: No differences were found between the groups in terms of age at follow-up (mean: 32 years), follow-up time after maturity (mean: 16.0 years), and curve size at inclusion (mean: 30 degrees) or at follow-up (mean: 35 degrees). The SRS-22/total score was a mean of 4.2 for braced patients and 4.1 for only observed patients. Neither total scores/subscales of the SRS-22 or SF-36 differed significantly between the groups. For the SF-36, no differences in relation to the Swedish age-matched norm scales were found for either group.


CONCLUSION: Patients with moderate AIS report good quality of life in their 30s, as measured by both the SRS-22 and SF-36, regardless of whether they received no active treatment or were brace treated during adolescence. Neither of the groups displayed any difference compared with the age-matched norm groups for the SF-36.

While that sounds great, we don't yet know what's going to happen to any of these people when they hit their 60's.

And, this is from the same group that published the following just 3 years ago:

http://www.ncbi.nlm.nih.gov/pubmed/17873811

Spine (Phila Pa 1976). 2007 Sep 15;32(20):2198-207.
A prospective study of brace treatment versus observation alone in adolescent idiopathic scoliosis: a follow-up mean of 16 years after maturity.

Danielsson AJ, Hasserius R, Ohlin A, Nachemson AL.

Department of Orthopedics, Sahlgrenska University Hospital, Göteborg, Sweden. danielsson.aina@telia.com
Abstract

STUDY DESIGN: The Swedish patients included in the previous SRS brace study were invited to take part in a long-term follow-up.

OBJECTIVE: To investigate the rate of scoliosis surgery and progression of curves from baseline as well as after maturity.

SUMMARY OF BACKGROUND DATA: Brace treatment was shown to be superior to electrical muscle stimulation, as well as observation alone, in the original SRS brace study. Few other studies have shown that brace treatment is effective in the treatment of scoliosis.

METHODS: Of 106 patients, 41 in Malmö (all Boston brace treatment) and 65 in Göteborg (observation alone as the intention to treat), 87% attended the follow-up, including radiography and chart review. All radiographs were (re)measured for curve size (Cobb method) by an unbiased examiner. Searching in the mandatory national database for performed surgery identified patients who had undergone surgery after maturity.

RESULTS: The mean follow-up time was 16 years and the mean age at follow-up was 32 years The 2 treatment groups had equal curve size at inclusion. The curve size of patients who were treated with a brace from the start was reduced by 6 degrees during treatment, but the curve size returned to the same level during the follow-up period. No patients who were primarily braced went on to undergo surgery. In patients with observation alone as the intention to treat, 20% were braced during adolescence due to progression and another 10% underwent surgery. Seventy percent were only observed and increased by 6 degrees from inclusion until now. No patients underwent surgery after maturity. Progression was related to premenarchal status.

CONCLUSION: The curves of patients with adolescent idiopathic scoliosis with a moderate or smaller size at maturity did not deteriorate beyond their original curve size at the 16-year follow-up. No patients treated primarily with a brace went on to undergo surgery, whereas 6 patients (10%) in the observation group required surgery during adolescence compared with none after maturity. Curve progression was related to immaturity.


It all makes my head spin.

[Ballet Mom]

Linda,

I think both those studies you post are great news for kids who were braced during their growth spurt! I'm sure, as long as the people are willing, that you will continue to get updates late into their lives which will be very interesting.

What wonderful conclusions...I am very happy for the good outlook for my daughter! :) They're so good, I'm going to repost them.

"CONCLUSION (Study 2): Patients with moderate AIS report good quality of life in their 30s, as measured by both the SRS-22 and SF-36, regardless of whether they received no active treatment or were brace treated during adolescence. Neither of the groups displayed any difference compared with the age-matched norm groups for the SF-36."


"CONCLUSION (Study 1): The curves of patients with adolescent idiopathic scoliosis with a moderate or smaller size at maturity did not deteriorate beyond their original curve size at the 16-year follow-up. No patients treated primarily with a brace went on to undergo surgery, whereas 6 patients (10%) in the observation group required surgery during adolescence compared with none after maturity. Curve progression was related to immaturity."

[Pooka1]

I'm gradually becoming convinced that even long-term studies aren't all they're cracked up to be in terms of scoliosis. This is the latest in studies out of the Swedish group once led by Alf Nachemson:

http://www.ncbi.nlm.nih.gov/pubmed/20038869

Health-related quality of life in untreated versus brace-treated patients with adolescent idiopathic scoliosis: a long-term follow-up.

Danielsson AJ, Hasserius R, Ohlin A, Nachemson AL.


CONCLUSION: Patients with moderate AIS report good quality of life in their 30s, as measured by both the SRS-22 and SF-36, regardless of whether they received no active treatment or were brace treated during adolescence. Neither of the groups displayed any difference compared with the age-matched norm groups for the SF-36.[/INDENT]

While that sounds great, we don't yet know what's going to happen to any of these people when they hit their 60's.

Yes and these results could be fairly interpreted as meaing the braced kids were treated unecessarily. It looks like most if not all were. A previous study estimated ~70% were braced who didn't need to be. That is really sad. At some point, they have to identify the majority(?) of kids who do not need bracing for ethical reasons.


And, this is from the same group that published the following just 3 years ago:

http://www.ncbi.nlm.nih.gov/pubmed/17873811

Spine (Phila Pa 1976). 2007 Sep 15;32(20):2198-207.
A prospective study of brace treatment versus observation alone in adolescent idiopathic scoliosis: a follow-up mean of 16 years after maturity.

Danielsson AJ, Hasserius R, Ohlin A, Nachemson AL.


RESULTS: The mean follow-up time was 16 years and the mean age at follow-up was 32 years The 2 treatment groups had equal curve size at inclusion. The curve size of patients who were treated with a brace from the start was reduced by 6 degrees during treatment, but the curve size returned to the same level during the follow-up period. No patients who were primarily braced went on to undergo surgery. In patients with observation alone as the intention to treat, 20% were braced during adolescence due to progression and another 10% underwent surgery. Seventy percent were only observed and increased by 6 degrees from inclusion until now. No patients underwent surgery after maturity. Progression was related to premenarchal status.

CONCLUSION: The curves of patients with adolescent idiopathic scoliosis with a moderate or smaller size at maturity did not deteriorate beyond their original curve size at the 16-year follow-up. No patients treated primarily with a brace went on to undergo surgery, whereas 6 patients (10%) in the observation group required surgery during adolescence compared with none after maturity. Curve progression was related to immaturity.


It all makes my head spin.

Mine too!

This is a potentially valuable report on the mid-years years. I hope they follow everyone into the out years.

The two sentences I bolded seem important and should have been directly related to the other conclusions and not just stated.

A major problem I see here is using the metric of having surgery. We know very well that some people in surgical range refuse it. This paper would be much stronger if they reported the number of people who reach 50* in each group rather than the sugical rates. The groups might be small enough such that the vagaries of which people will agree to surgery may have affected the results.

[LindaRacine]

Yes and these results could be fairly interpreted as meaing the braced kids were treated unecessarily. It looks like most if not all were. A previous study estimated ~70% were braced who didn't need to be. That is really sad. At some point, they have to identify the majority(?) of kids who do not need bracing for ethical reasons.



Mine too!

This is a potentially valuable report on the mid-years years. I hope they follow everyone into the out years.

The two sentences I bolded seem important and should have been directly related to the other conclusions and not just stated.

A major problem I see here is using the metric of having surgery. We know very well that some people in surgical range refuse it. This paper would be much stronger if they reported the number of people who reach 50* in each group rather than the sugical rates. The groups might be small enough such that the vagaries of which people will agree to surgery may have affected the results.

Hi...

I think it's probable that the sentences you called out were directly related to other conclusions in the full paper.

If you want me to pull the full text on any of these and email it to you, just let me know.

Regards,
Linda

[mamamax]

In light of the unknown long-term effects of surgery, a randomised controlled trial (RCT) seems necessary.


I was referring to the above quote. Saying "In light of the unknown long-term effects" implies to me that no data exists.

After reading the other info I think I can understand the point he is trying to make. He's saying that crossing out conservative studies because they lack controlled trials against the natural history of the curve is an unfair critique because there are no trials comparing the natural history to surgery either??

In reading the literature historically, the comment is a result of the suggestion that RTC studies be used in bracing treatments towards support of evidence based medicine relative to patient choice of treatment. Weiss retorts/suggests that if this measure is to be applied to bracing, then the same should be applied to surgical methods - as without it much remains unknown regarding patient benefits/risks.

He continues the discussion with outlining why RTC is not suitable for either, as a pharmaceutical model is unrealistic for complex disorders like scoliosis and that a better format is that of prospective controlled studies. He did state in November 2007 (SOSORT Editorial) (http://scoliosisjournal.com/content/2/1/19): While there is evidence in the form of prospective controlled studies that Scoliosis Intensive Rehabilitation (SIR) and braces can alter the natural history of the condition, there is no prospective controlled study comparing the natural history with surgical treatment.

From my perspective (admittedly lay) it seems that he is not so much talking about comparative studies (in the literature) as he is talking about the data used in them - in that the data collected is limited in scope and needs to be broader in order to achieve objective and valid scientific evidence of measurable medical benefit/risks, relative to some serious scientific methods of data collection (excluding RCT which appears not relevant to scoliosis for reasons previously stated) - and that the best way to do that is through prospective controlled studies and better data collection, such as Harrington envisioned, and far beyond what is now being done. Hopefully this will happen in the future, and a database more in keeping with Harrington's original vision will become a reality, encompassing a wider variety of topics, to include: long term evidence for surgical treatment on a higher level, addressing post surgical problems in an attempt to improve patient safety vs patient survey information (on a voluntary basis). In my opinion a similar database for conservative methods would also be desirable. So, I read the comment to state that until such time as reporting is more in-depth, that many things remain unknown (in the literature).

It was an eye-opener (for me) to learn from this debate paper, (http://www.pssjournal.com/content/2/1/25) that the levels of evidence for treatment can be shown (through the literature) to be: Level C for surgery, B for bracing, and A for physical therapy!

This led me to read one of his references:



Approach to scoliosis changed due to causes other than evidence: patients call for conservative (rehabilitation) experts to join in team orthopedic surgeons. (http://www.ncbi.nlm.nih.gov/pubmed/18432431?dopt=Abstract&holding=f1000,f1000m,isrctn)Disabil Rehabil. 2008;30(10):731-41.Negrini S.
CONCLUSIONS: Our results seem to confirm the initial hypothesis: The interest of the AIS treatment community (composed almost exclusively by orthopedic surgeons) has shifted toward fusion whereas research has increased, while conservative treatment is suffering a decrease in professional interest (and diminished research). AIS requires expert, committed evidence-based care, but other specialists totally devoted to conservative treatment, particularly (but not exclusively) Physical and Rehabilitation Medicine specialists, should enter the field to create better treating teams.

Thinking beyond the editorial, debate paper, and other things, I think the future looks more promising in that the data base Harrington envisioned could be expanded to include all forms of treatment, both surgical and conservative. Certainly the technology did not exist in Harrington's time to actually implement it. The technology does exist now. All that is lacking is coordinated scientific efforts spanning all treatment modalities and medical professions.

In the end - not a tool for proving which treatment is best - but rather, which treatment is best for which patient .. with more known, than unknown in terms of measurable medical benefits and risks. I suspect this is the vision of SOSORT.

A well organized patient/parent coalition would probably help as well - hey, worked for Lorenzo's Oil ... I definitely suggest yourself, Dingo and Ballet Mom on the task force ;-)

[Karen Ocker]

The reason why there aren't so many long term studies is that people did not live into the 70-100 year ages we have now.

If a curve is 70deg at age 50 and progresses only one degree a year to age 70 that, otherwise healthy 70 year old, would have a 90 deg curve and feel terrible.

I have a friend whose, otherwise healthy, 81 year old mom, is in constant pain from scoliosis. Her surgeon said she could have avoided this with surgery in her 70s. The woman has tried every treatment and intervention available. She needs morphine!

That being said. Would anyone think the Spinecore brace would give her some relief--at least??? She tried other braces.

This was the primary reason I had surgery at 60. I was otherwise healthy and did not want to spend my old age in pain and deformity--and be a burden to my family.

Scoliosis surgery has been done since the 1950's--me for example and I was well, for over 45years, before a revision.

[hdugger]

The reason why there aren't so many long term studies is that people did not live into the 70-100 year ages we have now.

I *think* the increase in life length seen recently has to do with infant mortality. I don't think there's been that much change in the life expectancy of adults.

[mamamax]

Karen -

I am sincerely happy for your success Karen - may it be continued, always.

I don't know if Spinecor bracing could help the mom of your friend. It is possible, but I certainly cannot say - that would be a matter for her to consider with her family and medical team.

I think there was an older study which indicated that scoliosis, in general, could lead to early mortality - and think there is a newer one that refutes that.

In any case, I have seen 90 year olds (non surgical cases) with more energy and zest for life than myself at 60 ... and I've also seen how the condition can ravage someone at the age of 70 - so, each case is different (both surgical and non surgical alike).

My choice at the moment is non surgical therapy (while keeping an eye on surgical options - since there is no way to predict with any certainty what the unknown future may hold for me personally). I do think that the future looks brighter in terms of rehabilitation with SSTR which appears perfect for hospital affiliated PT departments (for both non-surgical and surgical patients, in some cases where pain remains an unresolved issue). Other therapies appear promising as well. The more modern methods of bracing also appear very promising for both adolescents and adults. When surgery is necessary, as it was in your case, I will be the first to say we are fortunate to have the methods that exist, as stories like yours well attest to this. Should I ever require surgery - I would hope for success without revision. Given my current age, that may be possible if I matched your success! Yours truly is an inspiring story.

[Karen Ocker]

I *think* the increase in life length seen recently has to do with infant mortality. I don't think there's been that much change in the life expectancy of adults.

Infant mortality is a totally different statistic. That refers to infants who die as babies. They never get a chance. Babies do have a "life expectancy" but so does everyone else along the age spectrum.

This has greatly increased in the last 20-30 years due to advances in medicine. As persons age, as new therapies develop to help them, the life expectancy they originally had as babies does indeed change. Just ask any insurance agent.

When I was a teen very few people lived past 70. That is why Social Security was pegged to 65. No expected our current elderly to live so long!!!

Regarding long term studies:
When I had my first surgery in 1956 follow up was one year. Very few people had medical insurance. There were plans which covered portions. My parents
paid huge amounts for my surgery/casts/x-rays/doctors visits. I found the bills after my mom died in January. No wonder she couldn't sleep at night.

That being the case with many people, very few scoliosis patients would enter a study, if there was one, because they would have to pay for every visit/x-ray. It would be too much to ask.
Retrospective studies, that far back, are impossible in this situation because no data was collected.

[hdugger]

Infant mortality is a totally different statistic. That refers to infants who die as babies. They never get a chance. Babies do have a "life expectancy" but so does everyone else along the age spectrum.

This has greatly increased in the last 20-30 years due to advances in medicine. As persons age, as new therapies develop to help them, the life expectancy they originally had as babies does indeed change. Just ask any insurance agent.

When I was a teen very few people lived past 70. That is why Social Security was pegged to 65. No expected our current elderly to live so long!!!

Sorry, I meant that the dramatic increase in overall life expectancy has to do with decreasing the infant mortality rate. So, an infant at birth in 1920 had an overall life expectancy of 56, while now they have an overall life expectancy of 75. But, once you start measuring adults, the life expectancy has increased much less dramatically over the last 100 years. A 20 year old today has only a 10 year increase in life expectancy over a 20 year old in 1920, and a 60 year old today only has a 4 year increase in life expectancy over a 60 year old in 1920. In the last 30 years, it's changed much less dramatically - a four year increase for 20 year olds and a three year increase for 60 year olds.

All of this is just to say that we should actually have a pretty big pool of old people with scoliosis for long-term studies.

[skevimc]

In reading the literature historically, the comment is a result of the suggestion that RTC studies be used in bracing treatments towards support of evidence based medicine relative to patient choice of treatment. Weiss retorts/suggests that if this measure is to be applied to bracing, then the same should be applied to surgical methods - as without it much remains unknown regarding patient benefits/risks.

He continues the discussion with outlining why RTC is not suitable for either, as a pharmaceutical model is unrealistic for complex disorders like scoliosis and that a better format is that of prospective controlled studies. He did state in November 2007 (SOSORT Editorial) (http://scoliosisjournal.com/content/2/1/19): While there is evidence in the form of prospective controlled studies that Scoliosis Intensive Rehabilitation (SIR) and braces can alter the natural history of the condition, there is no prospective controlled study comparing the natural history with surgical treatment.

From my perspective (admittedly lay) it seems that he is not so much talking about comparative studies (in the literature) as he is talking about the data used in them - in that the data collected is limited in scope and needs to be broader in order to achieve objective and valid scientific evidence of measurable medical benefit/risks, relative to some serious scientific methods of data collection (excluding RCT which appears not relevant to scoliosis for reasons previously stated) - and that the best way to do that is through prospective controlled studies and better data collection, such as Harrington envisioned, and far beyond what is now being done. Hopefully this will happen in the future, and a database more in keeping with Harrington's original vision will become a reality, encompassing a wider variety of topics, to include: long term evidence for surgical treatment on a higher level, addressing post surgical problems in an attempt to improve patient safety vs patient survey information (on a voluntary basis). In my opinion a similar database for conservative methods would also be desirable. So, I read the comment to state that until such time as reporting is more in-depth, that many things remain unknown (in the literature).

It was an eye-opener (for me) to learn from this debate paper, (http://www.pssjournal.com/content/2/1/25) that the levels of evidence for treatment can be shown (through the literature) to be: Level C for surgery, B for bracing, and A for physical therapy!

This led me to read one of his references:



Approach to scoliosis changed due to causes other than evidence: patients call for conservative (rehabilitation) experts to join in team orthopedic surgeons. (http://www.ncbi.nlm.nih.gov/pubmed/18432431?dopt=Abstract&holding=f1000,f1000m,isrctn)Disabil Rehabil. 2008;30(10):731-41.Negrini S.
CONCLUSIONS: Our results seem to confirm the initial hypothesis: The interest of the AIS treatment community (composed almost exclusively by orthopedic surgeons) has shifted toward fusion whereas research has increased, while conservative treatment is suffering a decrease in professional interest (and diminished research). AIS requires expert, committed evidence-based care, but other specialists totally devoted to conservative treatment, particularly (but not exclusively) Physical and Rehabilitation Medicine specialists, should enter the field to create better treating teams.

Thinking beyond the editorial, debate paper, and other things, I think the future looks more promising in that the data base Harrington envisioned could be expanded to include all forms of treatment, both surgical and conservative. Certainly the technology did not exist in Harrington's time to actually implement it. The technology does exist now. All that is lacking is coordinated scientific efforts spanning all treatment modalities and medical professions.

In the end - not a tool for proving which treatment is best - but rather, which treatment is best for which patient .. with more known, than unknown in terms of measurable medical benefits and risks. I suspect this is the vision of SOSORT.

A well organized patient/parent coalition would probably help as well - hey, worked for Lorenzo's Oil ... I definitely suggest yourself, Dingo and Ballet Mom on the task force ;-)



The goal of the database is something I've thought of for a while as well. I didn't realize that it had tried to be set-up. I think this should be standard for every chronic disease or condition. National or international collaboration of treatments and short-term and long-term follow-ups would tremendously improve and progress the medical field. The principal organization should establish a standard set of reportable criteria. De-identify all data. And input whatever comments or variables concerning treatments. Patient comes in. Sees doctor. Describes treatment. Data gets posted. Next patient living 14 states away gets diagnosed and searches the database for patient data matching their criteria. Treatment options, long term follow-ups. Prognosis. Patient education. Etc...

There are so many possibilities with this. Certainly, money is an issue. But there are lots of open source, internet based solutions available. It could be accomplished. I imagine it will be but that might be 10+ years from now.

[Pooka1]

The reason why there aren't so many long term studies is that people did not live into the 70-100 year ages we have now.

If a curve is 70deg at age 50 and progresses only one degree a year to age 70 that, otherwise healthy 70 year old, would have a 90 deg curve and feel terrible.


Yes and this is what is meant by the "out" years. There is no obvious data on this but from the 10 to 1 ration of adult to adolescent fusion, I think we might tentativley conlcude many of the sub-surgical cases at maturity and even young adult or middle age end up surgical in the out years. For kids who wore braces, that is a real kick in the teeth as it is for all the folks told they can relax about it and stop worrying.

[hdugger]

Yes and this is what is meant by the "out" years. There is no obvious data on this but from the 10 to 1 ration of adult to adolescent fusion, I think we might tentativley conlcude many of the sub-surgical cases at maturity and even young adult or middle age end up surgical in the out years. For kids who wore braces, that is a real kick in the teeth as it is for all the folks told they can relax about it and stop worrying.

As the parent of an ubraced (and, apparently, unbraceable) kid, we would have gladly gone through bracing if it had kept his curve under 40 degrees until he hit his 30s or 40s.

People beyond that age tend to have back problems, even if they don't have scoliosis (mine started at 40, and my back is pretty straight). It's the having back problems as a young person that I wish we could have avoided for him.

[Pooka1]

As the parent of an unbraced (and, apparently, unbraceable) kid, we would have gladly gone through bracing if it had kept his curve under 40 degrees until he hit his 30s or 40s.

Have you asked your son if he would have gone through 23 hour/day bracing through the many teen years for a very uncertain chance of avoiding surgery as an adolescent and for the truly uncertain, if not unlikely chance of avoiding surgery at any point?

I have asked my one braced daughter this on a few occasions. She wore a night-time brace and has given me two answers thus far... the first was when she learned she needed surgery, she thought it was worth it. She did not regret trying the brace at all. That is not the case with a 23 hour a day brace which she informs me she would not have worn FULL STOP. I question how many kids would wear a 23 hour/day brace if they understood the state of the literature. I bet the answer is close to none.

The second, more recently answer she has given is lamenting not cutting to the chase and getting the surgery sooner. She started making these noises as she saw the results of her twin's surgery early out. While she says this now, I bet she would still say the brace was worth a try although she has also said she would not want to stay at the sub surgical angle (when she was there and wearing the brace) and not get the excellent correction her sister got if given the choice to avoid surgery.


People beyond that age tend to have back problems, even if they don't have scoliosis (mine started at 40, and my back is pretty straight). It's the having back problems as a young person that I wish we could have avoided for him.

That's true. Some 85% of folks with normal backs will have back pain bad enough to seek treatment I think is the statistic. For example I have a lumbar issue which I think is a sports injury. And 100% of normal folks will develop DDD if they live long enough. The issue, as far as I can tell, is if folks with even sub-surgical curves though still in the nominal treatment window encounter these things with greater frequency and earlier in life.

I am trying to understand the state of the art w.r.t. average progression rate. As I first understood our surgeon, he seemed to be saying if my daughter could stay below 50* at maturity, she would avoid fusion for life. I thought he meant that people below 50* at maturity simply don't progress ever. What I have come to learn from when I asked him to clarify is that folks still progress but usually at such a slow rate that they are not likely to need fusion in a normal lifespan.

But I don't think that is accurate after reading the testimonials. What I think we hear is 1* - 2* per year for the average (WIDE variation) sub surgical case that is in the conservative treatment window (~25* - 50*) at maturity. But let's say a kid is at 35* at 15 y.o. and progresses 1* a year. That means they are surgical at age 30 on average. If they are 25* at 15 years old then they are surgical at 40 years old. And assuming a slower progression, it seems that many folks will be surgical by their golden years.

As far as I can tell, all but the smallest curves that are below the conservative treatment range will reach surgical range well within a normal lifespan. And the 10 to 1 adult to adolescent fusion rate is consistent with that. What am I missing?

[mariaf]

Some 85% of folks with normal backs will have back pain bad enough to seek treatment I think is the statistic. For example I have a lumbar issue which I think is a sports injury. And 100% of normal folks will develop DDD if they live long enough.

You raise a good point, Sharon. My husband (who does not have scoliosis) has been seeing doctors, on and off, for nearly a decade for his back. He has some herniated/bulging discs that cause him pain - some days worse than others - mostly in his lower back.

One doctor even told him that if you put 100 people over a certain age (40 maybe, I can't recall) in an MRI tube, most would have some abnormality or issue with discs or otherwise that would cause them pain.

I also read that back pain is one of the top reasons why employees miss work.

This is not to say that scoliosis cannot cause pain later in life, but it seems that a large portion of the general population (much larger than the percentage who have scoliosis) will have an issue with back pain at some point in their lives.

[hdugger]

Have you asked your son if he would have gone through 23 hour/day bracing through the many teen years for a very uncertain chance of avoiding surgery as an adolescent and for the truly uncertain, if not unlikely chance of avoiding surgery at any point?

We asked about getting braced when our dr. didn't suggest it, so, yes, he was willing. I have no way of reading it past that.

My statement was to correct the idea that delaying surgery is a pointless goal. Being straighter and unfused *now*, as a young adult, is a million times more important to him (and me) then it would/will be later on. So, no, delaying the surgery by 10 or 20 years isn't a kick in the teeth. It's not the ideal outcome, but it certainly has great value.

[Pooka1]

My statement was to correct the idea that delaying surgery is a pointless goal. Being straighter and unfused *now*, as a young adult, is a million times more important to him (and me) then it would/will be later on. So, no, delaying the surgery by 10 or 20 years isn't a kick in the teeth. It's not the ideal outcome, but it certainly has great value.

Okay I see that. My one daughter wanted the cosmetic result now after seeing her sister. And her curve was barely noticeable to me at least. But it was obvious to her. For all I know she stopped wearing the brace at least partly because she was afraid it might stop the curve because we had several discussions about how she will not get the surgery if she is not in range and she will forever have a 40*-ish curve.

Since her surgery, and maybe owing in part to her incredibly fast recovery at least w.r.t. her sister, she has spontaneously remarked that she looks and feels normal, would have gotten the surgery sooner in hindsight if she could have done so, and that it was a big win for her.

But she's just a kid. :)

[hdugger]

Since her surgery, and maybe owing in part to her incredibly fast recovery at least w.r.t. her sister, she has spontaneously remarked that she looks and feels normal, would have gotten the surgery sooner in hindsight if she could have done so, and that it was a big win for her.


My sons runs some increased risk of coming out of surgery with a worse cosmetic effect and more discomfort, due to his risk factors for PJK. So, surgery is no panacea for us.

Bracing, if he had the kind of curve which would have allowed it, would have been the preferred treatment. Without that, doing nothing is the preferred treatment, until we can't avoid surgery.

[Ballet Mom]

There is no obvious data on this but from the 10 to 1 ration of adult to adolescent fusion, I think we might tentativley conlcude many of the sub-surgical cases at maturity and even young adult or middle age end up surgical in the out years. For kids who wore braces, that is a real kick in the teeth as it is for all the folks told they can relax about it and stop worrying.

Where did you get this ratio from? Are you quoting something? Are you including adult fusions for degenerative disc disease, spinal stenosis, "instability", fractures, degenerative scoliosis in adults from osteoarthritis and/or osteoporosis? Are you including revision surgeries due to earlier fusion surgeries for adolescent scoliosis?

For you to tentatively conclude that many of the sub-surgical cases at maturity end up surgical in the out years sure better have some data to back that claim up. Otherwise it is completely misleading and doesn't coincide with what most orthopedists state or the studies show.

[Ballet Mom]

My statement was to correct the idea that delaying surgery is a pointless goal. Being straighter and unfused *now*, as a young adult, is a million times more important to him (and me) then it would/will be later on. So, no, delaying the surgery by 10 or 20 years isn't a kick in the teeth. It's not the ideal outcome, but it certainly has great value.

I agree completely hdugger.

[Karen Ocker]

The year was Spring1956. I was 12 and really suffering psychologically from scoliosis. We had lost 2 grandparents withing 30 days, the roof caved in from a heavy snow fall at the summer cottage, my spine was drastically curving and Dr. Cobb(my surgeon of Cobb angle fame) recommended immediate treatment(Plaster cast with daily turnbuckle stretching to balance the curves, fusion and spending the rest of the year in bed, not walking to at least get some correction/stabilization of my triple curves. (Hospital for Special Surgery).
My mom wanted to wait to give me a "summer". Over those 3 months I was miserable and really regret an earlier intervention. I developed a pain I never had before and certainly could not join my peers in fun. Had sooo much pain By then my rib hump had become pointed and that did not ever come out with curve reduction. Later helped some at age 60 with my revision.
This scoliosis/decision has impacted the rest of my life:

Stomach problems(stomach was laying on its side for years-acid rolled up and scarred my esophagus).
Reduced lung capacity to half normal/loss of lung tissue from the chest deformity.
Urged to have (8yrs)hormone replacement therapy, against my wishes, to "help prevent osteoporosis of my spine" ended up with bilateral breast cancer.
Needed gallbladder out(I have NO risk factors for gallstones). Because I needed the special feeding between the 2 surgeries, the gallbladder "rests" and forms stones rapidly. A year and a half later had gallbladder pancreatitis.(I do not drink at all).
These are not opinions but actually resulted from having scoliosis.
The revision mitigated some of the stomach problems. I have had over 8 surgeries in the last 8 years.

Just retired.

[mamamax]

Every case is different. Here I am at 61 (in the fall) with absolutely no conditions that require operations or medication ... with the exception of my scoliosis which does cause a deformity (attached) and episodic need of pain medication.

I think it pretty clear that each case is different - some requiring surgical intervention, and others which could respond to non surgical rehabilitation and that there is no one size fits all.

[Ballet Mom]

Wow, Karen....you really are a pioneer!

I think most parents, I know I would, would have opted for spinal fusion surgery for any child with a 100 degree curve at the age of 14. I think the decision would be quite easy even with surgical risks.

But I'm not the one trying to scare parents.


But I don't think that is accurate after reading the testimonials. What I think we hear is 1* - 2* per year for the average (WIDE variation) sub surgical case that is in the conservative treatment window (~25* - 50*) at maturity. But let's say a kid is at 35* at 15 y.o. and progresses 1* a year. That means they are surgical at age 30 on average. If they are 25* at 15 years old then they are surgical at 40 years old. And assuming a slower progression, it seems that many folks will be surgical by their golden years.

As far as I can tell, all but the smallest curves that are below the conservative treatment range will reach surgical range well within a normal lifespan. And the 10 to 1 adult to adolescent fusion rate is consistent with that. What am I missing?

Linda just provided Pooka with a study, that Pooka has seen multiple times before that shows that kids in that 30+ years old range did NOT progress beyond their original diagnosis...and yet she still continues to try to scare parents with her unfounded prognostications of future catastrophe and distress should they not get their kids immediate surgery, or if they brace them to stop the progression.

Exactly who is trying to scare people?

Hdugger's son may never progress....in ten or twenty years they could have invented and tested flexible motion scoliosis implants...they could have invented stem-cell cures for nerve damage caused by surgery...they could have figured out how to deal with the proximal junctional kyphosis (PJK) that is occurring more frequently nowadays due to the stiffer implant systems in use, especially for kids with high-risk potential. There are all sorts of things that waiting could be beneficial for. His son's not in pain, he's getting help through massage and exercise treatments which have reduced the cosmetic concerns. As everyone knows here, scoliosis is not an emergency condition in most cases. So what's the problem with his waiting, as long as he remains in fairly decent health so that surgery in the future is still an option?

I don't get the constant fearmongering that is being directed at those patients not choosing immediate surgery or who choose to brace to potentially avoid surgery. What is the reason for that? I would really like to know...and I would think others would want an explanation also.

[Ballet Mom]

Every case is different. Here I am at 61 (in the fall) with absolutely no conditions that require operations or medication ... with the exception of my scoliosis which does cause a deformity (attached) and episodic need of pain medication.

I think it pretty clear that each case is different - some requiring surgical intervention, and others which could respond to non surgical rehabilitation and that there is no one size fits all.

Mamamax! Your picture of your back is amazing! No wonder you don't want surgery, I wouldn't either. There is hardly any deformity noticeable. My daughter looked more deformed at 35 degrees (at least through the shoulders...she doesn't have a lumbar curve)!

What were the size of your curve(s)? Or do you only have a lumbar curve? Amazing!

[hdugger]

I would guess that 1) if we'd had a scoliosis specialist for our first few visits and 2) if we'd had any idea how much more he would curve after 16, my son's doctor would have strongly recommended that he be operated on after his second visit at age 17 when his curve was 47 degrees and still going.

But, since we didn't do that, he's stabilized at a workable curve (although he's not crazy about the hump/kyphosis/or whatever it is under his right shoulderblade) and with no pain or obvious physical limitation.

My assumption is that he'll end up being operated on eventually, barring some miracle discovery. I've just seen too many single thoracic curves in young people go on to become painful double curves in older adults to think that he'll be able to avoid the operating table forever.

But, given his risk of PJK, I'm glad we're pushing that potential surgery out further. Of course, if his curve starts increasing, or he starts developing another curve, or he starts feeling pain, we'll rethink our plans.

[Pooka1]

But, since we didn't do that, he's stabilized at a workable curve

Yes your son's stability at/near the surgical range is at least the third or fourth testimonial like that in this little sandbox. I guess that's why surgeons require proof of progression and not just having one radiograph in range. Note to the folks at Clear not that reality necessarily matters for them.

[Ballet Mom]

My assumption is that he'll end up being operated on eventually, barring some miracle discovery. I've just seen too many single thoracic curves in young people go on to become painful double curves in older adults to think that he'll be able to avoid the operating table forever.

But, given his risk of PJK, I'm glad we're pushing that potential surgery out further. Of course, if his curve starts increasing, or he starts developing another curve, or he starts feeling pain, we'll rethink our plans.

As people with financial backgrounds know...options have value. There is much value in your ability to change your plans whenever you need or want to. And you never know...maybe someone might research the retinoids and find out scoliosis is caused by a latent infection in the spinal cord and solve the problem of progession or they may find something else that works....you just simply cannot know at this point. And so there is value in waiting...until you decide you don't want to wait anymore. :)

[mamamax]

Mamamax! Your picture of your back is amazing! No wonder you don't want surgery, I wouldn't either. There is hardly any deformity noticeable. My daughter looked more deformed at 35 degrees (at least through the shoulders...she doesn't have a lumbar curve)!

What were the size of your curve(s)? Or do you only have a lumbar curve? Amazing!

Thanks Ballet Mom :-) I have to say however, there are times when I feel quite deformed. Over the years, when I've had occasion to visit with new medical doctors, they have also been a bit surprised when seeing xrays following visual exams.

42 degrees Right Thoracic, 57 degrees Left thoracolumbar - Rotation 26 degrees. Immediate InBrace xray: 29 degrees thoracic/51 degrees thoracolumbar- Rotation 21 degrees. Bracing has resulted in small cobb angle improvement and improvement as well in balance, posture, and pain. I have noted small cosmetic improvement. The diminished pain of most value to me.

From the Schroth Point of view, I am a typical 4 curve left thoracolumbar (the marks on the image are relative to different Schroth breathing techniques and support required during exercise or when at rest, lying on my back.

Had it not been for the non surgical rehabilitation that I was able to receive, during a spell of great pain, I would have sought out surgery for relief. In fact I did consult with an SRS surgeon regarding that just prior to giving bracing a shot. Having come through that period, has given me cause to seek out other rehab methods and from what I am learning, SSTR may be able to provide me with even more benefit in the years ahead.

I hope to meet with a local PT department soon and explore the possibility of bringing SSTR to our area, not only for myself but for many others as well.

If I had relied solely and only upon the literature, or the standard medical recommendations - I would have, I'm sure, been to "scared" to try an alternative. Luckily, I do not scare too easy when it comes to this. Certainly there are cases that require surgery, without discussion - and then there are other cases like mine which will respond to other treatments. Like you say, much may be discovered in the near future. I am grateful to have been fortunate enough to be able to wait, and try rehabilitation until such time that surgery may be a safer option without future revision (should it be required in my case).

[Ballet Mom]

Have you been progressing much over your adult years mamamax? Or have you managed to stay stable over time?

Hope you don't mind my asking...you obviously don't have to answer if you don't want to.

[mamamax]

Very definitely there has been progression over the years aged 11 to 60. I would say that for me, the progression has been slow with periods of intense pain perhaps corresponding to muscular breaking points, or in other words at such point that the muscles are screaming out – enough already! Those are the times I have been driven to consult with doctors and surgeons. In between such times I have been asymptomatic for the most part. Looking back, breaking points surface approximately every ten years. Surgery has been recommended more than once - having declined, physical therapy the next recommended option. Chiropractic adjustments having done more good than exercise not designed for my specific curvature pattern. It is only in the last 10 years or so that I've needed to keep prescription pain medication on hand for use as needed.

Given the significant (to me) success with bracing, it seems to me that other rehabilitation methods would be worth my time and effort to pursue. So the facts are, there is a natural history of progression. Can it be stopped, or reversed?

The curves are structural by surgical standards (bending xrays & Adams test) and yet, doing a certain Schroth exercise near straightens my spine. Schroth being a physical therapy designed for specific curvature patterns. But schroth isn't just about mechanical exercise - it also involves unique breathing patterns while exercising. The one that I learned results in a feeling of side shift to the right with a lowering of the right hip on inhale and movement against convexities on exhale which results in a lengthening of the spine and better alignment.

As I understand it, for adults, SSTR would incorporate exercise with movement adjustments in daily activities in order to reinforce new learning patterns opposite of what exists as a result of the condition. Bracing is also used for adolescents and sometimes for adults when pain is a main issue.

For example, with a left thoracolumbar curve, my tendency, at rest, is to lounge on (or lean into) my left side, and I sleep on my left as well. I recently learned that Schroth would recommend lounging to the right and also sleeping on the right (same side as the raised hip). While it wasn't comfortable to do at first, I have started sleeping on my right side and after a week of this can see and feel benefit from it. So if anyone asks me if I think that adult rehabilitation is worth pursuing - I'd say yes, given that it is specific to curvature pattern and daily activities, and I'd even say that bracing is not just of benefit to the young, from my experience :-)

[Ballet Mom]

Hi mamamax,

I'm sorry to hear about the pain and progression. Maybe you could contact the Schroth people and they could train you in their methods...gratis? If you were happy and satisfied, you could end up being a good spokesperson for them. It would be very interesting to see if they were able to stop the progression.

I would be very interested in hearing all about it.

[mamamax]

Thanks Ballet Mom - I don't think too much about it (now) ... for the most part I've just taken the condition in stride. I don't think that such a laze fare attitude would be so wise over the next few decades though.

As for the suggestion that I receive free services in exchange for advertising (basically) well, that ain't gonna happen! Actually if I could do what ever I wanted, I would not only learn it for myself but also become a physical therapist and learn how to teach it to others. You would probably find me in the free clinic offering services to those who couldn't afford it. Another life time perhaps.

All I can do for now is explore. And while I've been fortunate enough to have learned a little - adequate instruction is lacking. Ever so often I think of Katherina Schroth and of how she discovered so much on her own. Martha Hawes as well. And that ballet teacher you have told us about. Such people have learned things that not only stop this condition in its tracks but in some cases, reverse it. What do they all have in common? A keen sense of body awareness, and how to change it through movement (I think). So until I can go to Germany, or Wisconsin, or California, or New York City .... I guess I'm doing the only thing I can do which is to learn more about the condition in general, more about my own body specifically - theory, theory, theory - and then one day ... better understand what I will be taught. Apologies if I have been too vocal :o

[Ballet Mom]

All I can do for now is explore. And while I've been fortunate enough to have learned a little - adequate instruction is lacking. Ever so often I think of Katherina Schroth and of how she discovered so much on her own. Martha Hawes as well. And that ballet teacher you have told us about. Such people have learned things that not only stop this condition in its tracks but in some cases, reverse it. What do they all have in common? A keen sense of body awareness, and how to change it through movement (I think). So until I can go to Germany, or Wisconsin, or California, or New York City .... I guess I'm doing the only thing I can do which is to learn more about the condition in general, more about my own body specifically - theory, theory, theory - and then one day ... better understand what I will be taught. Apologies if I have been too vocal :o



Apologies? Absolutely not! You're doing great! :)

[LindaRacine]

SSTR

http://www.scoliosisjournal.com/content/pdf/1748-7161-7-1.pdf

[AMom]

SSTR

http://www.scoliosisjournal.com/content/pdf/1748-7161-7-1.pdf

When I try to open this, I get a blank white screen, is anyone else having the same trouble?

[LindaRacine]

It's still working for me. It's a big file, so it's possible that you're either not waiting long enough, or you don't have enough memory, to load.

[Pooka1]

AMom,

It pops open immediately then and now. Do you want me to email you the link?

[mamamax]

Opens fine for me - thank you Linda ...

[AMom]

Opens fine for me - thank you Linda ...


Tried it again and it opened within 30 seconds. Not sure why it didn't work for my system or why it is working now. Thank you for the information.