BZebra hat geschrieben: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
Welcome in the forum.
