Von Dänemark - Please hilfe!

[ellee]

Hallo,
Meine deustche ist nicht so gut, aber ich will verscuhe.
Wir wohnen in Dänemark. Ich habe ein schwester (13 jahre alt) seine (degree) ist 58, aber du konnte nicht es sehen.

Sie hatte eine nacht korset jetzt. Sie hatte diesen korset in 6 monate. Wir waren zu kontrol 1 woche (ago). Die ärzten sagt, dass seinen degree war dieselbe als früher, 58. Dass ist sehr sehr gut. Wir hoffe, dass es vortsetzen will, (or reduce it) Wir wünsche nicht ein operation und will die beste für mein schwester.
Sie gehe zu physioterapi (1 twice a week) she use the maschinen there, so her muscles can be stronger.

Und jetzt wir wünschen die klinik in Bad Sobernheim gehen und spreche mit Dr. Weiss, (then she can make the practises in this klinik and be kontrolled by Dr. Weiss) moreover she will wear the night brace.

Until she is 15, and growned up, she can do it in this way. So the degree can reduce a little bit or be the same forever. We hope it very much!

Will we get a good result from the klinik? Will her degree fall or will they reduce? Please help us.
I wrote about Bzebra here, her degree was also the same, 58. And now it's about the 38, which is very very good. Hope she will see this post, or anybody els will answer me and help us to choice the right way.


Please help!

[Sandman77]

Höres veldig bra ut, en kan of finne en Schroth therapeut legre Nord i Tyskland og lärer Schroth först der eller kjöpe en bok slik en er forbredt til en kur opphold i Bad Sobernheim...

[Dalia]

Sandman, sei bitte so nett und schreibe Deutsch oder Englisch, das hier ist ein deutschsprachiges Forum mit einer englischsprachigen Rubrik und andere Leser wollen auch was verstehen.

[ellee]

Sandman - vielen dank!
Aber ich wünsche auch andere menschen zu hören. Bitte antworte was ich schreibe hatte

[BZebra]

Hello Ellee,

You found the right place to put your question online. Welcome in the forum.

I have already answered you per email. I will put the answer in here nevertheless, so that other people seeking for information may also read it.

Your sister, unfortunately, has no chance with merely a night brace (it's not only very very good that she has been able to hold her curve that long, just with a night-brace, it is almost a miracle), and neither will just Schroth nor a brace from Sobernheim be of sufficient quality.

Here is my answer you have already got per email:

Hallo Ellee,

First of all, read in this category, it is in English:
viewforum.php?f=19

You will find some postings from Tennis Lilly there. Tennis Lilly also
has about the same degree, she comes from the Caribbean. She informed
herself in the forum and has chosen to go to Stuttgart.

Important for you is to know, that you have absolutely no time to
loose. Your sister needs a very good brace within a few weeks. If the
curve gets into the area of 70 degrees, nothing can be done any more
without surgery, and this can happen within only months or even weeks.
So, she needs a very good brace as soon as possible.

For this purpose, you can go to Stuttgart (Rahmouni) or Berlin (Nahr):
links.php#Korsett-Therapie
We don't have more choices in Germany either, so that's the bright side,
not much to chose from.

I was in Stuttgart; this was already in 1991, so Rahmouni has a long
time of experience with curves of this degree. As for Berlin, I don't
have own experiences. So far it sounds good what we've heard, but if
it is enough for very strong curves I don't now for sure.

Rahmouni has a success rate of about 50% with curves around 60
degrees, meaning that about 50% of these patients will be able to
avoid surgery by reduction of their curves. This approximate number
comes from our forum, from patients who wrote about their therapy. We
have made a list here:
viewtopic.php?t=957

The great thing is that you can already know when the first x-ray is
taken two weeks after the start of bracing, because surprisingly,
patients with very good corrections in their braces have the least
problems getting used to them.

If you have a correction of near 40 degrees in brace (e.g. 60 degrees
without brace, 20 degrees in brace), you usually can manage to get
used to that brace and wear it within two to three months 21 to 23 hours
a day, and then you can be sure that the curve will not progress any
further.
Patients, on the other hand, who have already small corrections in
their braces, will very often also have more trouble getting used to
their brace, and in these cases, surgery cannot be avoided.

If the curve improves in the end, depends on how much growth is left;
you need to grow in order achieve a permanent reduction of the curve.

So, first step is to choose between Berlin and Stuttgart.
Both have their advantages and disadvantages.

Rahmouni does very strong corrections from the beginning on, which
enable the patients to get used to a maximum of correction as fast as
possible. At the beginning, when you start getting used to it, you
leave the brace pretty wide open (actually not closed at all), and
then you draw it tighter and tighter and get more correction this way.
So you are not dependent on changes at the brace in order to achieve
more correction, and to be safe that it doesn't get worse.

Nahr changes the brace a couple of times in order to reach the final
correction, and very often he does the initial control x-ray in brace
very late, sometimes even 6 months later. If in this time the brace
hasn't been correcting enough, it is too late for a patient who
already started with 60 degrees. So he leaves the patient into, what I
would describe as, a great insecurity, without any means of control of
the brace's quality. You will have to trust him blindly.

In Rahmouni's case there is an x-ray in brace taken after only two
weeks, and then you know what the brace does. As said before, you will
not be able to close the brace completely or wear it completely closed
over a longer time, but you know for sure that you will just have to
get used to the brace and wear it, and then it is going to correct to
whatever the degree was on the fist x-ray; so you are not buying a pig in
a poke (ihr kauft keine Katze im Sack) with Rahmouni.

When the brace corrects very little, which of course can happen as
well, you know from the start on that there is no chance of getting around
a surgery and that you should look for alternatives.

The drawback of Rahmouni's system is that it demands more self
responsibility from the patients, because there is no rule as to how
fast you have to draw the brace tighter. This intirely depends on your
body und toghness. You will have to experiment and always try to find a
middle way between drawing it as tight as possible and at the same time
wearing it as long as possible. If you draw it too tight, you won't be able
to wear it for long, because it hurts too much and you will never get used
to it. On the other side, if you leave it too wide open, you can wear it
without problems but it is not going to correct enough.

In Nahr's case, the patient doesn't have to make many own decisions, he
decides everything. He gives the patient the exact rules to go by. If
these rules are better or not depends on how good of a decision maker
you would be otherwise.

My advice: Inform yourself in the forums about Rahmouni and Nahr.
Choose one of them NOW (not in a few weeks), get an appointment next
week (not later). Tell them your sisters's degree, and that
it is urgent, and you will get a quick appointment then.

Between two and three weeks later, the brace will be ready. In
Rahmouni's case another two weeks later there is another appointment
for the first control and the first x-ray in brace. After that, if
every thing goes according to plan, you will have to go there every
three months for check-ups and to get changes done, and about every
year she will need a new brace. And each of these appointments takes
just one day from 10:00 to 17:00 o'clock.

She can go to Sobernheim as well, but this is not so important at the
moment, because the Schroth therapy is not effective enough to avoid
further progression at this degree. In your case, it has more of a
supportive function and the most important part, next to the
physiotherapy method she learns there (no machines by the way), is to
meet other teenagers who also wear braces and to exchange experiences
and tips and to strengthen the motivation to wear the brace.

For more information get this book:
http://www.amazon.de/exec/obidos/ASIN/3 ... infofor-21
It is very good, except maybe for the bracing part; there are others
who can do a better job in this area. They are the specialists for
physiotherapy.

To sum it up: Sobernheim for physiotherapy and meeting other patients,
Rahmouni or Nahr for the brace.

And then, make sure to write in the forum, because we can give you
advise what to do. If the correction in brace is not good enough, you
will have to look for other ways. If there are any problems, tell us,
sometimes they are solved very easily (we all have the same problems)
and on the other hand if they are not solved, this could mean the
complete failure of the therapy.

I wish you good luck and success,
BZebra

And since the curve did hold for such a long time in your case, do not make the mistake to believe that this is going to go on this way and that you have plenty of time to deciding the next step. It can be too late very quickly.

Have a look at Tennis Lilli's postings to see how fast a scoliosis in this age can progress: search.php?search_author=tennis+lilli

She will probably also have to wear the brace (21 to 23 hours per day) untill she is 18, not 15; unless she is already very mature. And after that, she will have to continue night-bracing for at least 3 more years.

Oh, and one important question: Did she already have her first menstruation, and if yes, how long ago?

[ellee]

Thank you so much for your answer. We will think about it.
Yes she had her first mesntruating, it was 1 year ago. And she is 13 now.

[BZebra]

O.K., then it is still urgent and she will have to wear the brace untill 18.

I had my first menstruation when I was 12 1/2 with 32 degrees, with 13 and 58 degrees I then got my brace. Such a progression is very typical for this time shortly before and after the first menstruation.

How was the second x-ray taken? Was she standing or lying down? How long had she been not wearing her brace before the x-ray was taken?

If the night-brace corrects very good, and she had been wearing it the night before, then there might have been a residue correction and the actual degree could be worse than 58 degrees.

Because, even if she has a perfectly correcting night-brace, wearing it only during night is not enough and the probabylity of a progression is near 100% at this age and with this degree. There are tables to calculate this probability. Or the first y-ray might not have been measured correctly.

The only time I have ever heard that somebody was able to hold this degree over puberty was someone who was born with exactly the same degree and deformaties of the vertebrae, which probably also prevented a progression during growth.

[ellee]

beside the brace she go tho physiotherapy where she make some practices with her. and we see a big difference, she is moe stronger now (muscles) than before.

it is actually at night, where children grow. so is it not enough? we have thinked about a boston brace. but my sister don't really want to wear it all the day, only at night.

we have a appointment with dr. weiss in july, we are not sure yet but we will maybe go and talk with him, so he can look at my sisters situation.
the doctor here said, that my sister had a good scoliosis, 2 curves, and the both were holding each other, so it maybe could not reduce or be moe bad.

we hope it will be like this, so we don't need a surgery. but maybe will the practices in bad sobernheim klinik be good for her.

the other questions about the x-ray etc., will I answer when my parents came home, because I don't eally know how long she has been not wearing the brace before the x-ray was taken.

We have actually also an appoinment at the place, where they had make my sisters brace. my sister thinks, that her brace is tight on the other side, so the (bandagist) will look at it, maybe it's because she has been growned up a little bit????

[BZebra]

it is actually at night, where children grow. so is it not enough?

No, wearing a brace under 20 hours a day, at this degree, will usually not stop progression. Night bracing alone is only indicated up to 20 degrees.

we have thinked about a boston brace. but my sister don't really want to wear it all the day, only at night.

Well, a boston brace is similar to a chêneau brace, just that the boston braces don't work at all with scoliosis this strong. Even a standard chêneau brace is only indicated up to 45 degrees. This is why there are only very few places where you can go to get a brace which might still work in the area of 60 degrees. There are none which work at 70 degrees.

we have a appointment with dr. weiss in july, we are not sure yet but we will maybe go and talk with him, so he can look at my sisters situation.

Well, as I said before, it is incredibly much time you are loosing there; waiting until July, and Dr. Weiss's team is not qualified enough for successful bracing of that strong scoliosis.

the doctor here said, that my sister had a good scoliosis, 2 curves, and the both were holding each other, so it maybe could not reduce or be moe bad.

Unfortunately that doesn't exist neither, unless you have deformities of the vertebrae, such as fused vertebrae, which act as if the spine was surgically fused.

There are scoliosis patterns which can be described as "bad", in terms of not being suited for bracing. But there is no pattern of idiopathic scoliosis which prevents progression, because in this case, the scoliosis would not have developed in the first place (it has progressed after all to nearly 60 degrees from virtually nothing).

So, for your sister it means deciding between a surgery and wearing a very good brace at least 21 hours a day. If she says she doesn't want to wear a brace during daytime, then you should look for surgery and you shouldn't wait too long.

but maybe will the practices in bad sobernheim klinik be good for her.

Unfortunately no, the Schroth exercises are far too ineffective for that. Without additional bracing, they are merely indicated up to 20 degrees. Over 20 degrees Schroth cannot prevent progression either. You can look all that up in the book I linked to.

So basically, for everything you are considering or doing right now, you are already far over the upper limit of indication.

[ellee]

maybe it's a miracle or maybe it's the night brace. in 6 months maybe more she wear this brace and until now she get a good result out of it. beside this she make practices with her phyisoterapeaut.

but she have to be controlled quickly by the doctors.
some of the scoliosis patients have a scoliose which stop in a certain degree and not be worse than the present degree. therefore we hope it's the same case.

after 6 months again she have to be controlled again, and if its still the same, which we hope, then she have to wear it until she is growned up.
until now the brace gave us good results. but we have to do more to reduce it. therefore we want to talk with dr. weiss.
and we have appointment with the bracemaker here, maybe we want to change it to a day brace. but not now, we want to see the result after 6 months. if its still the same we wear the night brace.

bzebra - thank you for your answers! i preciate it very very much.
we can't just change ou brace now, because the brace gave us a good result last week. we can't just change, we have to give it a chance. cause its work good right now.

have a good day everybody!

[Schnecke007]

Hi,

sorry, my english is not best.
Why do you call it a "good result" just to keep the same degrees? Isn't it worth trying to get a better result with more correction, i.e. to reduce the scoliosis? She may have less problems in adult age then.

Waiting 6 months by that age nearly is a crime (in my opinion). What if it really gets worse? Then she'll need surgery. Why not trying everything to avoid that??

By the way I appreciate you careing for your sister!

Sencerely yours,
Schnecke

[ellee]

Its okay, my english is not so good to. But you write better than me.

I am definitly agree. Its a good result because it haven't be worse after 6 months and its still the same degree. Thats a good result. And that show that we have to wear it 6 months more. But it could be a better result if the degree fall.
But that's why we had a appointment with our bracemaker, we will ask them about a day brace or another form for brace that she can wear at day and beside that wear the night brace at night.

Thank you for your answer. I have to take care of her, I wish it was my that was in her situation

[BZebra]

some of the scoliosis patients have a scoliose which stop in a certain degree and not be worse than the present degree. therefore we hope it's the same case.

Yes, but not during a growth spurt, not during puberty. As I said before, there has been done research about this, and based on the results the probability of progression can be calculated and it's near 100%.

Here it is:

<img src="files/progressionrisk_674.gif">

As a risser sign, if you don't know your sister's, take 5 (that is the highest which would actually mean she is not growing any more). Risser signs are from 0 to 5. 0 means no maturity of the skeleton (lots of growth left), 5 means maximum maturity of the skeleton (no growth left, best constellation).

Progression Factor: 58 - (3 x 5) / 13 = 3.3
Incidence of Progression: 100%

If she isn't growing any more (at all), only then there would be a fair chance of this happening (a stop of progression) at the age of 13. But otherwise...

I guess you haven't quite understood the mechanisms underlying the progression of scoliosis, which is natural since you haven't read anything about it yet, so I can really only recommend you to read the English book I linked to or amongst the German ones this one http://www.amazon.de/exec/obidos/ASIN/3 ... infofor-21 which is for patients and very easy to understand.

Both of these books are written by Dr. Weiß, and since you want to go there anyways, I can already tell you that he is not recommending any of the things you are doing right now and planning to continue. No responsible medic in Germany would. Even the most ordinary orthopaedist without any special knowledge about scoliosis therapy knows that this is doomed to go wrong and will end in surgery.

I wish you good luck nevertheless,
BZebra