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View Full Version : Just as Predicted............... The Brace Is Poop!!!


France & Amelia
5th August 2009, 12:49 PM
Hello!

My daughter was x-rayed in her brace (6 weeks after the inital alteration following first ever fitting) and, as I would have bet money on, it isnt doing what it is meant to!

So............. plan B is that she is now being referred to somewhere completely differrent (2 hours drive from us) Werner-Wicker Klink which, according to the Germans, is surgery happy! But who knows? I guess we shall have to wait and see. She still has to wear the current brace, so as to increase the chances of stopping any curve progression, but we now have no idea when she will actually get a brace fit for the purpose. It's so frustrating knowing that she has/is suffering (especially in the heat) in a brace which is poop and its taken us 5 months to reach this stage.

Sorry to moan on but, having researched braces for hours, I was 99% positive that her brace was useless. It just all boils down to the fact that succesful brace treatment rests heavily in the skill of the orthotist. If your orthotist is poop you're (um........... searching for an appropriate non swear word..................) stuck?

:bdance::bdance::bdance:

GillyG
5th August 2009, 02:06 PM
Oh I'm so sorry to hear this :( It just goes to show though - mother's intuition is the best :p Stupid brace man :(

BeckyH
5th August 2009, 02:09 PM
sorry to hear this :( hope you can find someone better and who works faster!

France & Amelia
5th August 2009, 02:46 PM
Thank you!

Im now researching the hospital her orthopaedic dr has referred her to. Like I said, rumour has it they are predominently surgery orientated and often recommends surgery even in cases where it is not absolutely necessary! Not what I wanted to hear. Plus their braces are not that great either - apparently.

All the German people I have discussed braces with say the best orthotists in Germany are Rahmouni and Nahr. However convincing the 'Powers that Be' to send her there is altogether another matter. So my research continues once again.

Do people have to travel far and wide in the UK for treatment?? I guess it all depends on presumably the nearest hospital to home??? The Werner Wicker is 113 miles (approx 2 hrs drive) from us.

Thanks for your help

frances

BeckyH
5th August 2009, 05:25 PM
frances in the UK it kind of depends on your case and where you live. if i were the parent of a child with infantile or juvenile scoliosis, i'd only have them seen at stanmore, even if i lived right at the other end of the country! adolescent scoli is a bit different, but it depends what sort of treatment you want, i still think i'd travel to stanmore for their expertise. i wouldn't say it's uncommon to have to travel that sort of distance here.

France & Amelia
6th August 2009, 09:51 AM
Thanks Becky. Im just trying to get a broader picture re UK treatment to compare, as The British Forces Drs keep mentioning distance to me which is really not the main issue. Even if not practical, in reality I would travel the world for my children. The more knowledge I have the better I will be able to express my concerns to the necessary people.

Currently we are in a situation where I would rather drive 4/5 hours to the best orthotist in Germany for the best brace than 2 hours to a hospital whoes reputation was built for surgery over the decades. Clearly, if conservative treatment is the recommendation, she needs the best conservative treatment, not the best surgeons?! Im still trying to find someone who actually has a brace from the Hospital she is scheduled to attend - could be tricky.

:bdance:

helengracie
21st October 2009, 10:08 PM
Have you tried SCENAR? There are doctors in Germany using it for SCOLISIS. I could probably get a name of someone close to you. Are you interested? I am in Australia - but my daughter had scoliosis in 2003 and recovered. Just recently I have been inspired to get on support groups and tell people what worked for us. Mainly because I am emailing directly with several people who are going through it and it is helping them. I want them to join this site - even though it is europe based.

mark
21st October 2009, 10:26 PM
Helen you have posted the same thing about SCENER in at least 5 different threads i have read, you have posted a linkto the web site in at least 2 and i have checked the website out and it seems to be a site advertising treatment for sports injuries can you explain exactly what it has to do with scoliosis/kyphosis or any other spinal related disorder

Amazed Jean
22nd October 2009, 02:05 AM
Francie and Amelia,
I am sorrry you two are having such a crap outcome. You are absolutely correct. If the person who fits the brace is poop then you get poop. I think you can do better. You might want to go to the prescribed doctor and pick his brain a bit. He can't force you to do anything and he won't be offering surgery or any treatment that day. Gaining information is a good thing. All scoliosis cases are different. So keep going with your gut feel until you are 100% sure you are doing what feels right to you. DO NOT be afraid to raise a little hell if necessary to get your kid treated in a way that you are comfortable with.