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

[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/encycloped...&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.

.

.

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[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. 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?