View Full Version : Brace Alterations & Adjustments
France & Amelia
22nd June 2009, 04:46 PM
I've mentioned this previously in other threads but Im just really concerned whether my daughter's brace is doing what it is meant to be doing. The ortho specialist x-rayed her in it for the first time last week (tuesday) and told the orthotist it was not achieving the correct level of correction. He advised him to push the back in at the top-right. Anyway when we collected the brace on Wednesday, he had not done that, but added extra foam padding under the right-hand armpit???
The brace is now causing pink skin abrasions in this area and Amelia is finding it incredibly uncomfortable. Im just concerned that no x-rays have been taken since this adjustment to ascertain whether the brace is now in fact achieving the desired correction? Her next appointment at the ortho specialist is in two weeks.
If other people have their braces adjusted for similar reasons, do they get x-rayed soon after to see if the alteration is working, or do they have to wait weeks/months??? I just have no idea what is normal or best practice???
Another thing, does anyone know if their orthosis had their x-rays to work with during the brace making process??? Im just concerned that Amelia's did not and if so, I cannot see how an exact replica brace moulded on the positive of a plaster cast could possibly ever achieve any correction??? Surely it would just hold the spine in the existing position???
Im clearly no expert so any advice would be great - thanks :D
22nd June 2009, 10:49 PM
A brace is not meant to correct a curve but rather to prevent it from getting too much worse before surgery. It is really just to try and hold the spine in it's current position.
My daughter had hers made from a plaster cast about a year ago. As far as I know they don't have the x-rays. Her curve was 53 degrees at the start. When she had her xrays done 5 months later they said the curve had just increased a little. Next week we will find out what it is now as she is scheduled for her surgery on 1st July. So as you can see she has literally only had one check in the last year which I think is the norm here, unless someone was in pain. It seems Amelia is having far more checks and at least that will give you the opportunity to ask some of the questions that have been going through your head this last week or so. I know it is all such a big thing to begin with but it will all settle down eventually.:)
22nd June 2009, 11:08 PM
i disagree a little with what debbie has said, i think the purpose of bracing depends on your starting point. unfortunately for debbie and elodie, with the size of elodie's curve at the point of diagnosis, surgery was very much a given, whereas amelia's curve (i think?) is smaller.
bracing broadly speaking has one of two purposes: to either correct a curvature or prevent the progression of one (thus buying the patient some time and hopefully a better surgical result).
despite the two different purposes, my understanding is that the achievement of the brace should be the same: i certainly had x-rays in my brace in order to determine whether or not it was doing its job (when i was diagnosed, my curves were around 45 to 48 degrees, and surgery was always inevitable for me).
to answer your original questions, frances, i'm not sure how long alterations "should" take, as i never had to have any major ones. however, some can be done on the spot if the orthotist has the time (such as adding extra padding or re-glueing padding). when i was cast, i was sitting down and i remember the plaster drying and it getting harder and harder to breathe, which i found pretty distressing. i think the orthotist pushed a little on my spine whilst the cast was setting, though i don't remember them trying too hard to get a lot of correction (you do that with the padding and tightening it as much as possible i think). he commented that my spine was very flexible though.
for what it's worth, i had padding under an armpit too, it can seem like it's in random places. i know it's really hard and i feel very sympathetic of the fact that you're struggling with a language you don't speak and an unfamiliar healthcare system, but i think there also comes a point (and it's not easy) where you have to surrender yourselves to the hands of an expert and trust what they are doing. we're all here to support you, i'm sorry i maybe haven't been much use, but i think it's good that you've finally got the brace and can build up in it.
is amelia wearing anything underneath it? a very soft but thin cotton vest is ideal. i kind of think she's lucky as well in that fashion has changed and it's now really cool to wear leggings and longer tops with a waist belt. that sort of stuff wasn't in when i was her age (and i now no longer have the body to get away with it!) - i read one of your posts saying she was struggling for stuff to wear, but those sorst of outfits would be ideal.
her skin will toughen up and the brace will become less painful. taking a bit of paracetamol wouldn't hurt (even if it's more placebo affect than anything else!) good luck.
France & Amelia
23rd June 2009, 02:13 PM
Yes it's a Cheneau Brace for 'conservative' treatment along with physio. It is meant to achieve some correction by applying pressure to specific areas with a '3 point system mechanism'. Despite some negative reports, it has been shown to change some curves with Adolescent Idiopathic Scoliosis. And it is prescribed to prevent the necessity for surgery - well that's the theory.
BUT.............. and this is a BIG BUT...............the brace has to be curve specific with biomenchanical 3D models + X-rays and not just a brace design based on dated concepts which the orthotist has been merrily churning out for decades with no recent training. When we turned up for the initial cast taking, there was no paperwork what-so-ever. These are all totally independent places you see.
Amelia's orthotist just happens to be "the local one the army happens to have a contract with" to quote the ortho specialist himself. They also get other surgical applicances from there + orthosis/prothetics. Not to mention chiropody going on in the next cubical (next to you) and a selection of snazzy mobility scooters. Just trying to pain a picture of the set-up (high street shop in a town with workshop at back). I just want to make sure her brace does the job it is meant to do. To-date I have no faith what-so-ever. It has been agreed (in principal with the budge people) that she can go to an alternative, but it all has to go through the correct admin channels.
I have also been on a German Scoli site with an English Room - :yay: . Which has been very helpful. They all tend to go to two orthotists Rahmani (5 hrs drive frm us) and Nahr (3.5 hrs away). But then they all pay high medical insurance each month out of their wages, which their insurance company picks up the bill for. Not quite sure how we will fit into this senario, the army may say it's too much. Not sure how much is too much? I really don't expect Harley Street, I just dont want Out-of-Touch Street thats all!
France & Amelia
23rd June 2009, 02:41 PM
Oh Amelia currently has some v v thin cotton t-shirts which she wears underneath but they are too wide really and crease lots underneath. Im waiting for a G&M to get back to me re some seamless vests, will have to have them posted to UK and then forwarded on. She is off school on Thursday so going to our local town again then. The shops are not a patch on UK clothes shops but there is an H & M which is the best of a bad bunch. I've ordered a few things onlline, but it would be much better being able to try on.
Plus we need to drive back to UK in a couple of weeks (12 hr drive YUCK YUCK OOH) so we will incorporate some lovely UK shopping then - you just can't beat it.
Yes, this armpit padding is more like three extra layers of hard thick foam. As opposed to luxurious lambs wool for comfort (if only). This digs in loads, where as the ortho specialst told the orthotist to push in the back (on her rib hump) which has not been done at all. I know Im no expert but honestly I reckon he forgot just like he forgot which colour she chose!!! Idiot :bump:
23rd June 2009, 03:43 PM
yeah, that's what the standard padding is like, you can't have anything soft unfortunately, it's not padding in a traditional sense :(
as you're coming back to the uk in a couple of weeks have you put any more thought into trying to get a second opinion over here?
France & Amelia
23rd June 2009, 06:49 PM
Yes but I doubt we will be able to get a referral within weeks at short notice for this trip. He is out of the country now and I dont even know when exactly we are travelling back as his leave has not yet been approved. So it could be next week, or it could be the week after or the week after that? Forward planning is impossible.:zzz:
France & Amelia
23rd June 2009, 06:50 PM
Ooops 'He' being my husband - sorry!
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