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 Betreff des Beitrags: Schroth-therapy for 11 year old??
BeitragVerfasst: Fr, 27.05.2005 - 14:19 
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My daughter, a talented ballet dancer as it happens, has been diagnosed last year with an intially 24 degree and later (sept 04) 29 degree T 12 scoliosis.

Since january she is wearing a custommade (from plastercast) TSLO (approx 20-22 hrs/day) brace which has brought the curve back to 21 degree (in brace) (april o5)

no further management has been suggested but to wait patiently till november 05 for a further follow up appointment

we have been told that there is no reliable evidence that any form of exercise therapy will make a difference

despite this advice we getting her to swim twice a week to stop the backmuscles from getting to weak, and ofcourse she is continuing her ballet on a very frequent basis

I have read about the Katarina Schroth Klinik, and i am interested but wonder whether it is suitable for a girl so young

I get the impression that there are many similar clinics in germany, but is this one considered to be the best one?

Is there clear evidence of the effectiveness of the treatment provided?

I understand that the initial treatment is for about 4 weeks, how much time does one spend daily afterwards on the various exercises?

How ofter (and for how long) do patients come back?

Is there a long waitinglist?

I would be very grateful for any guidance/ views

Gerbo


Zuletzt geändert von gerbo am Fr, 15.06.2007 - 08:24, insgesamt 1-mal geändert.

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BeitragVerfasst: Fr, 27.05.2005 - 17:05 
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Dear Gerbo,

Most of your questions I can't answer, but I'm sure there are other people in this forum who can answer.

In Germany are two Katharina Schroth clinics (Bad Sobernheim and Bad Salzungen - both are the same, just at an other place in Germany, and these two clinics are the best Katharina Schroth clinics in Germany), when I was there I met a girl who was 7 years old - you see, 11 years are ok to go to this clinic. Until your daughter is 12 years old you can go with her in this clinic if she doesn't want to go alone there.
At the beginning of course, it will be hard for her to understand, but it is possible.

After the course of treatment she has to do this practices, that she learns in this clinic, at home - every day. So you need a rung - wall (?) and a big mirror at home.

I heard the waitinglists are longer in Bad Sobernheim than in Bad Salzungen, but this could have been changed in last time. I would say, if you will call there in next time, you will get (maybe) a date for October/ November/ December ( I estimate!)

In her age it is very important for her to go to such an clinic! Of course, it's sad that just in Germany are such clinics - but it is important to go there.

I would think, that her brace isn't good enough. She could have 10 degrees in her brace.
Here in Germany people, doctors and orthopaedic specialists say, that a brace is first really good, when this brace bisect the degrees.

I don't know if she has to give up her ballet dances know - I really don't know, this you should ask a doctor.

I hope I helped you little bit.

Bye, Fine

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BeitragVerfasst: Fr, 27.05.2005 - 17:23 
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Hello Gerbo,

gerbo hat geschrieben:
(sept 04) 29 degree T 12 scoliosis.

Since january she is wearing a custommade (from plastercast) TSLO (approx 20-22 hrs/day) brace which has brought the curve back to 21 degree (in brace) (april o5).


from what you've written about the degrees in and without brace, we can already say, that this brace does definitely not correct sufficiently. :nein:
She will need a far better one, especially because she is only 11 and the most dangerous time of puberty with accelerated growth lies still ahead.
With this brace there is very little chance that you can prevent a further progression, let alone achieve a permanent correction.

With a good brace it is very probable that the spine of your daughter can be correctet to +-0 degrees in brace. If one does achieve a slight "over correction" into the other direction, chances are very good that the scoliosis can be cured completely and that she would only have to wear the brace for maybe three years.

To give you two examples, a positive and a negative one:

Bild

29°
From left to right:
1. before bracing therapy
2. in brace
3. after 2 years bracing therapy without brace


BildBild

27°
Progression within 7 months from 27° to 68°.

The latter could also be happening with the brace your daughter wears now. It actually happened to Fine, who has been posting just above me and it is not at all unusual within bracing-therapy with unsufficient correction (required minimum is 50%).

The bracing therapy of your daughter could be a total success or a total failure, all depending on the quality of the brace (and of cause if she wears it or not).

So, first of all you would have to concentrate on getting your daughter a better brace.

I figure you come from Great Britain!? I would recommend you to get into contact with Dr. Jaques Chêneau, who is an international consultant for scoliosis-therapy with the chêneau brace. He speaks English. Discuss with him, if there is a possibility of an adequate bracing therapy near you or if it is more advisable to come to Germany for that.

There might also be the possibility of a far distance bracing-therapy with the RSC brace. Specialized in this method is Dr. Rigo in Barcelona. However I would not recommend this therapy because the quality of these braces is often even worse than the quality of the brace your daughter has now. There exist very good results with this brace, however it seems that these results cannot be achieved by a far distance therapy, merely based on x-rays und a few measured data send by email with a complete lack of quality control on site.

Zitat:
we have been told that there is no reliable evidence that any form of exercise therapy will make a difference

despite this advice we getting her to swim twice a week to stop the backmuscles from getting to weak, and ofcourse she is continuing her ballet on a very frequent basis


I guess this is true for the physiotherapy methods existing in Great Britain. The Schroth-Method does only exist in Germany twice and once in Barcelona (Spain).

In the case of your daughter she should go to the Katharina-Schroth-Clinic in Bad Sobernheim, because there are more children of her age and they are more accustomed to having patients from other countries not speaking German.
It is necessary that an adult accompanies her and supports her during therapy, because she will be learning a method where she herself has to contribute a lot and where she really has to understand what she is supposed to do.
This is a disadvantage, because the younger you are, the more difficult it is to understand the method, even for the German speaking children (but the manage!). However it is also the big advantage for you, as she will be able to continue the therapy independently at home.

The daily exercises should take about 20 - 30 minutes per day, supervised by the adult who accompanied her during the rehabilitation program and learned the exercises with her.

But it has to be said that this therapy is a supporting therapy which is unlikely to have success without a good bracing-therapy.

Zitat:
I get the impression that there are many similar clinics in germany, but is this one considered to be the best one?


You're right, the one in Bad Sobernheim is considered the best. Actually the other ones are note really worth considering (except for the one in Bad Salzungen, but there will not be many patients at your daughters age).

Zitat:
Is there clear evidence of the effectiveness of the treatment provided?


Yes there is clear scientific evidence. However the main success is based on the combination of many methods and psychological support: A large amount of information about the scoliosis and the most efficient ways of conservative treatment (also including bracing) and motivation of the patients to wear their braces by meeting others who also have one and not at least by seeing patients with severe scoliosis und thus becoming aware of what will happen to you if you refuse wearing it.

Zitat:
I understand that the initial treatment is for about 4 weeks, how much time does one spend daily afterwards on the various exercises?

How ofter (and for how long) do patients come back?


At least 4 weeks, but 5 or 6 weeks would be better of course. A 11 year old girl like your daughter, who has to wear a brace, would be coming once a year. In Germany however the treatment is been paid by health insurance.

But in your case, coming from Great Britain without having a German health insurance, I guess it would rather be a question of how much you can afford.

Zitat:
Is there a long waitinglist?


Not any more! German heath insurances are getting more reluctant to financing long stays. Thats why there are now more places over the year. Depending on when you want to go, the time you have to wait would be between 6 weeks up to a maximum of 1 year.

But in any case, the brace has priority. You need a better one and if it comes to deciding whether to finance a bracing therapy in Germany or a rehabilitation in the Katharina-Schroth-Clinic, take the brace!
You can manage without Schroth, you cannot manage without a good brace.

All the adresses you need you will find on our link-page.

My recommendation for a bracing-therapy in Germany would be either Rahmouni in Stuttgart or Klaus Nahr in Berlin. I would neither take an RSC-Brace nor take a brace from Bad Sobernheim, even if they are specialised in physiotherapy. I have been there 9 times and they are really good, but not at bracing.

Swimming is good, but unlike Schroth not specigic enoughe to improve the scoliosis. Ballet is no problem as long she wears her brace the rest of the daytime.
She sould avoid exercises which mobilise the spine, as this results into faster progression of the scoliosis.

If you have any questions, don't hesitate to ask. And if you get into contact with Dr. Chêneau, would you please give us a feedback as to what he recommended to you? That would be great.

Good luck to your daughter,
BZebra

p.s.: Do you understand German or Spanish? There is a number of very usefull literature we could recommend.


Zuletzt geändert von BZebra am Mi, 31.01.2007 - 13:09, insgesamt 1-mal geändert.

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BeitragVerfasst: Mo, 30.05.2005 - 17:54 
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I just found this Website about the Schroth-Therapy in English. Might be interesting for you: http://www.erikamaude.com/


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BeitragVerfasst: Mo, 11.07.2005 - 16:09 
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Dear BZebra

Thank you for your extensive reply, which was helpful. I have not taken any specific action yet, but are kind of "considering my options"

I suppose, that as my daughters current brace, is very comfortable and sits very tight against her body (which means it is easy to hide under her clothes) I am not keen to change, unless "I have to", which means in practice I think "if the curve is worse on check-up in oktober" (do wonder whether i should ask for check x ray in and out of brace)

will write to dr Cheneau, as you suggest

You do promote the Rahmouni brace very heavily on the webside, how do I know whether this is indeed the best german bracing has to offer, and not just a personal favourite of yourself. Don't get me wrong on this one, as I sound more cynical then i want to sound, but miracle cures and "ultimate braces" are plastered over the internet.

On the webside, the Rahmouni braces look very bulky, is that indeed thecase for most patients. also, what is the comfort of wearing like for most patients??

again, thanks for advice given up till now, which is appreciated

with best wishes

gerbo


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BeitragVerfasst: Mo, 11.07.2005 - 22:23 
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Dear wittetulp,

here is a little list to convince you, that ist not
wittetulp hat geschrieben:
only that Rahmouni is a personal favourite of BZebra
.

netkitty hat geschrieben:

First X-Rays in brace after about 4 weeks - Idiopathic scoliosis
- Anchetcheprure (36°, 18 years): 100%
- schloesd's Tochter (26°, 12 years): 100%
- Finomina (~25°, 15 years): 100%
- MHD2222's Sohn (20°, 14 Jyears): 80%
- Sabi (30°, damals 14 years): 100%
- Loewin16's Tochter (10 years, 47°) 75%
- lisabet's Tochter (l. 37°/ th. 39°, ~12 years): 100% / 75%
- Fiara (62°, 13/14 years): 70%
- Tulear's Tochter (59°, 11 years): 70%
- BZebra (58°, that time 13 years): 70% (2 years after brace therapy 35% corretion)
- Tabea (37°, 17 years): 67,5%
- netkitty (40°, 35 years): 67,5%
- Allegra (52°, 28 years): 65%
- Daniela (~50°, 16 years): 65%
- Mutter's doughter (47°, 13 Jahre): 65%
- Simone (60°, 13 years): 60%
- Missma (48°, 24 years): 60%
- Tulipana's doughter (67°, 11 years): 55%
- Faultier B. (47°, 33 years): 50%
- Nova (l. 35° / th. 30°, ~14 years (?)): 60% / 50%
- NettiAngel (l. 32°/ th. 37°, 16 years): 80% / 40%
- Soj_83's doughter Fine (60°, 13 years): 40%
- sloopy (50°, 22 years): 40%
- Tina1981 (60°, 22 years): 35%
- bluecat (l. 52°/ th. 52°, 24 years): 45% / 25%
First X-Rays after about 4 weeks in brace - Congenital scoliosis
- Ulli's doughter (l. 28° / th. 28°, 6 years): 100% / 100% Marfan-Syndrom



Statistiks - Idiopathic Skoliosis
All
>= 50% correction: 79% (19)
< 50% correction: 21% (5)

Teenagers (< 20 years)
>= 50% correction: 88% (15)
< 50% correction: 12% (2)
< 40% correction: 0% (0)
< 30% correction: 0% (0)

adults (>= 20 years)
>= 50% Korrektur: 57% (4)
< 50% Korrektur: 14% (1)
< 40% Korrektur: 14% (1)
< 30% Korrektur: 14% (1)

Legend

- Username (degrees of the primary curve (mesured in degrees) without brace, age of the time they have got their first brace): Correction of the curve in percent.

or

- Username (Gradzahl lumbal without brace / curve thoracal without brace, age of the time they have got their first brace): correction of the lumbar curve / correktion of the thoracal curve in Percent


On this list you find a lot of scoliosis patients who all are members of this forum.
The stories are true and you can ask all those people via pn.

Nobody here has any interest in supporting Rahmouni.

But i think if you ask Dr Cheneau, he will tell you too.
Rahmouni is not only the best, german bracing has to offer, but also the most experienced manufacturer of scoliosis braces.
In his broshure ther you can read about a british girl and her experiences with her brace. http://www.querweg22.de/rahmouni_.jpg

I can unterstand your doubts, you as a mother want to get the best therapy for your dougther and if you compare the correction of your doughters brace with those listed above than you wil find your answer.

But....dont waste too much time waiting. As long as your doughter grows, the curve will get worse and if the brace is not good enough, there will be no chance of getting better, not even of keeping the curve like ist is.

I wish you all the best.

Nicole

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No matter.
Try again. Fail again.
Fail better.

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BeitragVerfasst: Di, 12.07.2005 - 09:01 
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Thank you for that reply, which is helpful

As a father I do indeed want the best for my daughter, but are also aware of how much she hates every bit of a fuss I make or cause

Outwardly we are now in a steady and manageable situation with a for her acceptable brace and additional physical therapy.

However, this is indeed not worth anything if it doesn't work, and the first indication willbe in oktober when we have our next follow up.

I am currently investigating my options so I will have a "Plan B" if things do not go to plan.

Are you able to comment how most patients judge this brace with respect of wearer comfort and visibility under clothes?

Also, are there any longterm outcome figures available, specially, how well do people do after they come out of this brace?

thanks again for your help

best wishes

gerbo


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BeitragVerfasst: Di, 12.07.2005 - 11:09 
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As a further comment, having looked at the results, they are indeed, to english standards, stunning.

I do wonder whether there are any published papers re longterm outcomes, with a succes like this, writing about it must be an obvious thing to do

alternatively, would it be worthwhile to start a new question in your forum (I cannot do it as my german is not good enough) asking for age corrected and uncorrected curve at start of therapy and the same information (age and corrected and uncorrected curve) at this time?? It is the longterm outcomes which count in the end.

regards

gerbo


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BeitragVerfasst: Di, 12.07.2005 - 14:40 
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Hi gerbo,

sorry for making you a mother in my last sentence. ;)
Most of the parents in this forum are mothers, so i thought you were one too.

Concerning your question about longterm outcomes we only have BZebras results.
She startet her therapy at the age of about 13 years and a curve of 58°

13 years: 58°, before brace therapy
13 years: 18°, in brace

After two years completely without brace at the age of 25 her x-ray showd a remaining curve of 38 degrees.
Before she started the bracing therapy most doctores told her, that with this curve the only possibility would be a surgery.

Look at her x-rays and don't hesitate to ask if there is anything you don't understand.
http://www.skoliose-info-forum.de/viewtopic.php?t=1853

Most of the forum members are teenagers. Obviously, becaus they have to wear the brace now. That's why they come here, to share their experiences or to find friends with the same problems to talk about.

But we hope that in a few years we can provide more information about longterm outcomes.

Best wishes,
Nicole

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No matter.
Try again. Fail again.
Fail better.

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BeitragVerfasst: Di, 12.07.2005 - 15:04 
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Hi Nicole

I actually would be so interested to find out how all these teenagers who are on your overview of initial correction are doing now, whether 1,2,3,4 or more years into therapy or whether completed therapy but I am not confident enough to put the question (in German) myself

also,,the other question I would want to put would be, as I said before, how comfortable is it and how easy you can hide it under your clothes (i.e, is it quite bulky or not)

would you be prepared to put those questions(in german) on the forum, I will be able to read german (with my rudimentary sec school knowledge)

thanks again

gerbo


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wittetulp hat geschrieben:
You do promote the Rahmouni brace very heavily on the webside, how do I know whether this is indeed the best german bracing has to offer, and not just a personal favourite of yourself.


There are also some other german websites, independent of this one, who recommend Rahmouni as well:

http://www.skoliose-selbsthilfe.ch/de/links.html (Switzerland, quite far away from Stuttgart)
http://skoliniti.de/html/korsett.htm

Rahmouni is also recommended by Dr. Steffan (see link-page).

But in my opinion Berlin would be an as good alternative for your daughter, even though I cannot recommend that from my own experiences, as I have never met Mr. Nahr and I am no patient of his. But from what I have heard he seems rather promising. A reccommendation form outside this forum for Klaus Nahr did come from Dr. Chêneau.

Zitat:
On the webside, the Rahmouni braces look very bulky, is that indeed the case for most patients. also, what is the comfort of wearing like for most patients??


This depends, and unfortunately it depends on the patient as well, how strongly he insists that certain unnecessary parts of the brace do get cut off. My first brace was indeed very bulky (in '91) and you could see it under the cloths. The more I got onto Rahmouni's nerves the more he cut away so that in the end, even my parents blamed me from time to time for not wearing it (even though I was at that precise moment, as I actually always did) or friends of mine asked me if I do still have my brace. Obviously they couldn't see it any more, otherwise they would not have needed to ask me, who was currently wearing it. ;)

The list of patients Nicole has posted above does come originally from this site: http://skoliose-info-forum.de/viewtopic.php?p=9063#9063
There are links to each patients profile, so it would be possible to read their latest postings or even ask them personally. I understand that this would be quite a bit of work. I could of course sum it up for you, however I am not willing to do this openly in the forum but privately via private message I don't see any problem. I wouldn't want to share my knowledge about other people in public, I think that should be left to themselves.

Concerning the comfort. They are of course less comfortable than braces which do not really work (like your daughters for instance). It results out of the higher pressure, which is required to correct the curve. This difference however does only play a role during the first weeks or months, in which the body has to get used to the brace. After a bit of time the spine and torso will follow the correcting pressure and from that moment on, it is not more uncomfortable than other braces which, honestly spoken, don't even deserve their name, and worst of all, they are virtually worn for nothing.

And as mentioned above, I would not wait and go on with your daughters therapy as it is now. If she gets into puberty and starts growing fast it can be too late even for a Rahmouni brace within just a few months. Doing this would be a very risky thing.

If you want any further information about the aforementioned patients, you are welcome to contact me per private message. I will have time to answer you after the 14th of july.

wittetulp hat geschrieben:
As a further comment, having looked at the results, they are indeed, to english standards, stunning.

I do wonder whether there are any published papers re longterm outcomes, with a succes like this, writing about it must be an obvious thing to do.


Braces with such an effectivness exist only for 10 - 15 years now in Germany. I guess Rahmouni was actually the first one in Germany, who achieved these results. Up to now there are still very few people who are experienced enoughe for a good bracing therapy.
If any papers regarding the longterm outcomes with an effective bracing-therapy will be published recently, I guess it would neccesarily have to be one about former Rahmouni patients.

But there are papers about bracing therapies less effective than the one we reccommend (correction of more than 50%).

This for example might be interesting for you:
http://www.ncbi.nlm.nih.gov/entrez/quer ... query_hl=1

Zitat:
High initial correction of more than 40% (p < 0.002) and good compliance (p< 0.004) were of significant impact for the outcome.


wittetulp hat geschrieben:
alternatively, would it be worthwhile to start a new question in your forum (I cannot do it as my german is not good enough) asking for age corrected and uncorrected curve at start of therapy and the same information (age and corrected and uncorrected curve) at this time?? It is the longterm outcomes which count in the end.


Ask whatever you want to ask. Just start a thread in English in one of the other non-English forums of this site. One of us will come and translate that into German. A correct translation to German shouldn't be a big problem for us. ;)

Cheers,
BZebra


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Thank you BZebra for your further extensive reply. Your English seems very good, are you British?

I have now posted my question elsewhere on the site, as you might have noticed and i look forward to the replies.

Our current management doesn't only consist of the bracing, we are also doing the following

1) twice weekly swimming to improve strength of supporting muscles
2) twice weekly "torso rotation exercises" in a gym. This is an aproach which was trialled some years ago in the USA where in a small study most patients either stabilised or reduced their curve following six months of well controlled resistance exercises. Article describing it (by Dr Vert Mooney) is well worth reading, I can send you a copy by email if you want to.
3) we have started work with a (sports) physiotherapist looking at strength and movement assymetries, and looking at ways of trying to correct these.

If our combined approach leads to improvement we will stick with it, if not, we will look at more aggressive bracing.

all your comments have been very helpful to me

regards

gerbo


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BeitragVerfasst: Mo, 18.07.2005 - 22:13 
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wittetulp hat geschrieben:
Your English seems very good, are you British?


Oh, thanks, I'm really flattered :) No, I'm not British and neither is anybody of my family. Writing in English is actually one my biggest weaknesses. I'm currently practicing with you. ;)

wittetulp hat geschrieben:
1) twice weekly swimming to improve strength of supporting muscles
2) twice weekly "torso rotation exercises" in a gym. This is an aproach which was trialled some years ago in the USA where in a small study most patients either stabilised or reduced their curve following six months of well controlled resistance exercises. Article describing it (by Dr Vert Mooney) is well worth reading, I can send you a copy by email if you want to.
3) we have started work with a (sports) physiotherapist looking at strength and movement assymetries, and looking at ways of trying to correct these.


This could also be quite problematic.

Swimming is rather unspecific: though it does not do any harm, it isn't of great use either; at least regarding the scoliosis.

The other treatments, which seem to be more specific, might also bear a bigger risk of worsening the curve. Of all the physiotherapy methods against scoliosis, which have occurred over the last century in Germany, there were only two, which had positiv effects and did not do any harm: one of them is SCHROTH the other one is VOJTA.

Most people simply do not have enough qualification for scoliosis therapy, and this is quite understandable, as there are so few places were one could actually learn it.
Of course everybody gives his best, but in most cases it is simply not enough.

It would be great if you could send me that article. Easiest way would be to upload it here in the forum. If it's too big, you could alternatively use the following address: skoliose@gmail.com

I actually presume that the positive results of this study (if they aren't faked for promotion purposes) do only apply to a specific type of scoliosis and curve pattern, which means that if this specific treatment is applied to a different curve pattern, it could easily lead to a contrary effect and accelerate progression.
The difficulty of scoliosis-therapy is to be able to treat all kinds of scoliosis and curve patterns AND more than one curve within the same patient at the SAME(!) time (not one after the other!).

As you are experimenting with physiotherapeutical methods (which is actually not recommended in Germany, as you can easily do more harm than good with it) I would recommend you the yellow book displayed on top of this site. There are lots of pictures in it, also about how definitely NOT to do it. It is of course in German. The same book does also exist in Spanish. The text has already been translated into English, but it is not published yet and I fear, due to the lack of a publisher interested, it won't be published soon either.

It contains over 600 pictures, so even if one doesn't understand a single word, there is still lots of stuff to look at. Understanding the text is not of such great importance anyway, as the method (Schroth) is too complicated to be learned autodidactic. Lots of people in this forum couldn't believe this and tried, but as expected non of them succeeded. ;)
So the purpose of this book would mainly be to show what could go wrong. Also it might give your daughter a good motivation for her therapy.

All in all I would say that the bracing therapy of your daughter could as well be considered as no therapy at all. You have seen the amount of correction my brace did perform. Of that initial correction only one half did remain in the end. Braces which correct less than 50% do not even guarantee a stop of the progression.

Your daughter, with 20-30 degrees scoliosis before first menstruation (I presume), has statistically seen a chance of 20%, that her curve remains stable. With a probability of about 80%, her scoliosis will progress.

Bear in mind that it could be too late within a few month for any non-surgical therapy and also that with a good brace (which corrects her curve to +- 0°; which actually can be done quite easily at this degree) she has a very realistic chance of straightening her spine nearly completely as well as only having to wear her brace for 2 or 3 years, instead of otherwise until the age of 17 - 18.

In your case, living in GB, it is of course a financial question. But if you already consider sending her to Germany for learning Schroth, then this money would be more efficiently spend on a working brace, as those are far more effective than any physiotherapy can ever be.

BZebra


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BeitragVerfasst: Mi, 24.01.2007 - 00:52 
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Hi BZebra,
I am 13 years old and just started my menstruation on January 12th 2007.(if necessary)
I was diagnosed with a scoliosis of about 25° in the upper curve and 30° in the lower curve. I was suggested to go to a physical therapist and did exercises for about 3 months. Then in December 2006 I had a next x-ray done and the scoliosis increased to 31° in the upper curve and 40° in the lower curve. Then I was suggested to have a brace made called the Cheneur brace. I live in the Caribbean and have little contacts with brace manufacturers. I would have a chance to go to Germany which is 8 hours with plane away from where I live or to Chicago which is 4 hours away from where I live. The question is Where is it better to get a brace done? Or does it not matter? I would like to get a brace personally fitted and molded for my body.
Thanks a lot and I would appreciate an answer.
Sunny Greetings from the Caribbean.


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Hi Lili,

if money doesn't matter, I would rather go to Germany than to the US since, if you check on the English speaking forums, you won't find any real recommendation for an orthotist (bracemaker) supported by many people so that you can be sure that it really is good address and worth your time and money. They don't know where to go themselves.

For Germany there are two places to go (http://www.skoliose-info-forum.de/links.php#Korsett-Therapie): Stuttgart or Berlin
So I guess in your case I would choose Berlin due to the better flight connections.

There is just one problem. You will have to go there at least about 4-5 times per year for checkups, adjustments and about every year a new brace. You may contact knahr (the orthotist in Berlin) for further information, as to how often you would have to come personally.

Recently there has also been started a Scoliosis Journal http://www.scoliosisjournal.com/ specialised on conservative treatment of scoliosis. A name that very often turns up in good publications about non-surgical scoliosis treatments is Professor Martha C Hawes from the US. You might want to ask her if she knows of any good addresses in the United States competitive with German standards, which see seems to be familiar with beeing the English proofreader of this book, or at least with the standards provides by Dr. Weiß and Dr. Rigo.

Dr. Hans-Rudolf Weiß from Bad Sobernheim (Germany) who works together with Sanomed and Ortholutions (Ortholutions in turn works together with Rigo from Spain) is however out of question if you are considering coming to Germany. Compared to the most braces produced in the US, even in Germany, theirs are no doubt better, but compared to the aforementioned addresses in Stuttgart and Berlin, they are only average at best.

Concerning your age, Cobb degree and physical development, you urgently need a very good brace. Within only a few months now your curve can go up to 60 degrees and more, which would require surgery then.

Greetings from frosty Germany (-5°C :frown:)
BZebra


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Hey Lilli, welcome on bo(a)rd! :)
It's interesting you live in the Caribbean, reminds me of the Pirates (huh, BZebra? :D )! :P
Now, you say you have little contact to bracemakers, could you maybe define this a little closer? ;) BZebra wrote:

BZebra hat geschrieben:
There is just one problem. You will have to go there at least about 4-5 times per year for checkups, adjustments and about every year a new brace. You may contact knahr (the orthotist in Berlin) for further information, as to how often you would have to come personally.


And of course she's absolutely right, but I doubt whether it would be possible for you to come to Germany four times a year! So that's why I'm asking you about your bracemaker - maybe he could do the necessary changes and controls, I don't think that this can be so very difficult. ;)


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Hey BZebra and DerMensch,
Thank You for you informative answer and I really appreciate the good answers to my questions. Well BZebra when we were in Hamburg we went to a bracemaker and he said he would do it. Is the one in Berlin a really good one and really reccomendable place to go or does it not matter if I go to Berlin or Hmaburg because my father lives in Hamburg. I will check with my father and hope to hear from you again.
Greeting from Anguilla.


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BeitragVerfasst: Di, 30.01.2007 - 10:31 
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Hey Lilli,
Lilli hat geschrieben:
Is the one in Berlin a really good one and really recommendable place to go or does it not matter if I go to Berlin or Hamburg because my father lives in Hamburg.


In fact the bracemaker in Berlin (Klaus Nahr) is beside the other one already mentioned by BZebra (Rahmouni in Stuttgart) the only bracemaker we can recommend you. Hamburg is not a good address.

We continually monitor the experiences of our forum-members with different bracemakers and we compare them to the results of scientific studies. What we found, over and over again, is:

The quality of a brace mainly depends on how much it corrects the curve. The corrective effect of the brace on the curve can be measured on an x-ray, taken while he or she is wearing the brace. Then the curve and the rotation of the spine in the brace is compared to an x-ray of the spine without the brace, taken not long before. This corrective effect of the brace is called initial correction or primary correction.

A minimum of about 50% is needed to be relatively sure that the progression of the scoliosis can be stopped by wearing the brace. When a higher initial correction is achieved, chances are good that the treatment can not only stop, but significantly improve the curve during periods of growth.

The more severe (in terms of degrees cobb) the scoliosis is at the beginning of the treatment, the more important is a high initial correction. But with growing curvature it also gets more difficult to achieve this. Your scoliosis already is relatively severe (40 and 31 degrees).

Our experience is that only about three or four bracemakers in Germany are capable to built braces that can achieve initial corrections higher than 50%. Most bracemakers built braces that have initial corrections so poor that they are of no use at all.

Please have a look at the following chart, the data are taken from recent scientific studies and from our own experiences. Several bracemakers are compared with regard to the mean initial correction of the braces they deliver. Rahmouni and Nahr achieve the highest corrections. Only these can be recommended in your case. Some achieve modest corrections (for example the scoliologic brace). They could be recommended to patients with less severe scoliosis, but not to you. A lot of braces achieve poor corrections (for example the triac brace). They can't be recommended to anyone.

Bild
Bild

As far as I know the situation in other countries is not better but often even worse. I bet that in many English speaking countries no bracemaker will be found with the knowledge of Nahr or Rahmouni. In many countries completely out-dated braces are still in use, such as the boston or the mikwaukee brace in America.

So in short, my advice:

If you can afford it, go to Germany to get a brace.
Only go to Klaus Nahr in Berlin or Rahmouni in Stuttgart.
Without a brace from Nahr or Rahmouni your scoliosis will surely worsen and you will probably have to undergo surgery.

Greetings
David


Zuletzt geändert von gauklerdavid am Do, 01.02.2007 - 12:54, insgesamt 2-mal geändert.

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tennis lilli hat geschrieben:
Well BZebra when we were in Hamburg we went to a bracemaker and he said he would do it. Is the one in Berlin a really good one and really reccomendable place to go or does it not matter if I go to Berlin or Hamburg because my father lives in Hamburg.

Nobody of us (well, at least most of us) would voluntarily go to Hamburg to get a brace there. We don't know of any really good orthotists for scoliosis treatment in that region.

Don't forget that even in Germany 80% of all produced braces aren't even good enough to stop a progression, and in that case, it's not really worth coming to Germany at all.


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BZebra!
Your English is marvelous.
you have explained such a complex matter as Skoliosis is in many details: congratulations.

To the Gerbo family:
Obviously you were a bit confused and - in some way rejected - by the fact that practically all the members of this forum recommend the braces made by Rahmouni.
This must have appeared to you like a kind of "local arrogance".
How come?
Nobody else should be able to do the proper thing?

Let me explain this in some detail.
There is no school in which an Orthpedic Technician can learn how to design the optimal brace.
Especially, since each patient has a different problem according to which the brace has to be designed and created.

When I visited Dr. Steffan a few weeks ago (he and Rahmouni are "working" on my daughters skoliosis) he explained me that only a close cooperation between a dedicated Orthopedic Doctor and a similarly dedicated Orthopedic Craftsman like Rahmouni can lead to such good results.
There is no obvious way and rule for Ortheophedic Technicians how to make a good and optimally correcting brace.
To get to this point you need instinct, experience and a solid knowledge of anatomie.
And Rahmouni obviously has this and Dr. Steffan is helping him.

Most of the orthopedic Technicians do not have this optimal constellation.

The question why such a brace helps at all, not only to keep the persons back bone upright as long as he/she carries it, but also why it keeps the back bone upright even after removing the brace, we call this "Ausschulen", is not so easy to understand.

The back bone is stabilized by a complicated system of several layers of many small muscles that keep the backbone together and - normally - keep it straight.
Most of the muscles of the back bone are static, i.e. they are always contracted and thus fix the vertebrae in place.
Others connect the ribs to the vertabrae and so forth.
You should hav a look on a poster with these muscles. It is fascinating how such an astonishingly complex system of several layers of muscles has evolved.

Look, for example, into this paper:
http://www.anatom.uni-tuebingen.de/docs ... ulatur.pdf

Now, when the back bone is not strait anymore but bent to one side, the back bone muscles on one side are overly strechted whereas on the other side they are overly contracted.
The brace forces the back bone into its normal position.
As a consequence those muscles that have been overly strechted will contract to their nomal length and those muscles that have been adapted to an overly contratcted state will recover and get strechted accordingly.
If this correcting force of the brace is acting long enough the different mussles wil take on the tonus they had bevor the change that occurred out of unknown reasons ("idiopathic").

This is the hope and the chance.
However, from the side of the technician who makes the brace, it is important to get an optimal correction.
And, depending of the angle that has to be corrected, that hurts.
An optimally correcting brace is a kind of torture instrument.
From the side of the patient, it is important that he/she wears the brace as often as possible.
The muscles that have been adapted to extension on one side and to contraction on the other side will only then re-adapt to the "normal" tonus and keep it, if the brace is used practically everyday, all day, many (23) hours a day.

It is a very difficuilt thing for a young girl, and it needs understandig the process and remembering the consequences.
But even older girls (like our 16 years old daughter) that have an understanding of the phsiological processes often just can't bare it, because the brace squeezes the whole thorax into the desired position and thereby stretches some muscles and pushes some ribs into the proper position.
That hurts!
A brace that does not hurt is not worth very much.
This is the worst part of the treatment

Although we have an Orthopedic Technician just around the corner (20 km) and a clinic with an orthopädic workshop at a distance of 100 km, we have decided to take the long trip to Stuttgart (440 km one way) to get the Rahmouni brace.

There is another fact that Dr. Steffan pointod out to me:
It appears that most of the German Orthopedic Doctors are not interested in Skoliosis.
It might be the similar in other countries.
But about 4 % of children and adolescents develop this condition in a more or less heavy way.
So you get either no advice at all or wrong advice.
The worst advice can be an operation which irreversibly changes you body and will cause you problems for the rest of your life.

Since your daughter is in the age in which changes occur very fast, you shuld - under no circumstances - wait until October.

Bring her to Dr. Steffan at a day in which Rahmouni is at the doctors Office. They then discuss the treatment plan for each patient.

The costs:
Dr. Steffan will take a special x ray that coverse the whole length of the back bone.
The Doctors bill will be around 60 - 100 € .
The brace will be between 2,500 and 3,000 €
After returning from the Doctor in Rahmounis Car he will prepare a Gypsum cast of your daughters thorax.
On this he will construct the brace.
About 10 days later you have to be in Stuttgart again.
At this date the brace will be fitted and you can then take it home.

After another few weeks, when your daughter has become used to use the brace as long as possible, you have to be in Stuttgart again.
Dr- Steffan will the take another ex ray, this time the girl has to weare the brace for the x ray.
From the comparison of the two x ray pictures you will get to know how good the brace corrects.
If nevecvessary, Rahmouni may change someting in the cushion-like bolsters in the brace (we call them "Pelotten"), that help to squeeze the thorax into the proper form.

I hope that I could give you some more information on why we think that this Technician makes the optimal braces.

Kindest reagrds1

Frank


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