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RugbyLaura
29th May 2007, 08:21 PM
Hi,

(thanks Titch for your comments on the other thread - we have decided to go ahead with the appointment, you never know what is round the corner).

Immy has an appointment on Friday with the Orthotist at BROH. I have been given some idea of what to expect but would value any further advice. In particaular: should Immy take a book and/or any other form of entertainment. Will there be more x-rays?

Thanks,

Laura

tonibunny
29th May 2007, 09:48 PM
Hi Laura,

Different hospitals will have slightly different techniques for brace casting. At the RNOH I sometimes used to be cast for braces lying on the same Risser casting table on which I had my "permanent" bodycasts applied, but at other times I would have them done standing up.

I actually think I'd better leave this question to the people who have had brace casting done more recently than me! One thing I can say, though, is that the plaster of paris always feels really warm and quite tight as it's hardening around you. Immy shouldn't worry about this - it's normal, it never gets unbearable and is over really quickly. I can imagine that it might feel a bit claustrophobic if you're not expecting it though!

The hardened plaster is cut off using a little strimmy saw thing, which is specially designed so it cannot possibly cut anything soft (it needs to be pressed down on something hard before it will even switch on). It makes a lot of noise but again it's over really quickly.

Hope this helps :)

Toni xx

RugbyLaura
29th May 2007, 10:59 PM
Hello Toni,

Thanks for your shared experiences, as you say, they may be a little outdated but are welcome none the less! Immy has been so happy (to date) at having scoliosis; she feels very special. It has been suggested that she is being naive and I guess she is, but she's only 9!! I don't want her to live her life feeling sorry for herself and worrying about things. Am I being over protective? Perhaps I should be warning her about how horrible it will be - which will make sure it is a horrible experience - or should I just leave her to it? With her natural sunny outlook it might be OK....

It's a minefield being a parent, but I wouldn't choose not to be one. I don't know what I'd do without this forum...

Laura

tonibunny
29th May 2007, 11:10 PM
No no no please don't think you should tell Immy negative things about scoli, not when she's doing so well! Having scoliosis, wearing a brace and even having surgery needn't be a horrible experience for a young child.

I am sure I only coped well with growing up with severe scoliosis, all the casts and Milwaukee braces and the surgery because my parents just treated it like it was normal life and nothing really special. It was just something that we got on with, I didn't get any sympathy or special treatment. I used to love going into hospital for cast changes because it was fun to be on the children's ward with kids from all over the world, and I looked forward to surgery when I was ten "because it meant 6 weeks off school" :D

RugbyLaura
29th May 2007, 11:18 PM
Thanks Toni, you give me strength!!

Laura XX

jennie
29th May 2007, 11:22 PM
Hi there, our daughter Emily had her first brace just before her 10th birthday, and had her 3rd in March. She was very upset,and very scared at the first plastering, which was 2 weeks after we found out. They suspend her using some tape and a wooden frame with her head and bottom resting on what really looks like a sink with 2 draining boards. They put a 'vest' on then plaster her up. A physio usually supports her under her arms. They have a long rubber tube under the vest, and they cut the plaster with a stanley knife against the tube. She loves it now. then we wait a week and go back for the brace. It's usually uncomfortable for a few days and then all is well. Good Luck

RosieRich
30th May 2007, 12:09 AM
Hi Laura,
When Megan has her casting done, she stands in a frame with her head supported while the orthotist and assistant wind the plaster of paris bandages around her. They then literally hold her body in a staight position (not an exact science) while the plaster goes off which is very quick. Megan loves it, I don't know why. I think it's the warm cosy feeling. They then cut it off and take a few measurements. The worry I have is the brace is only as good as the casting.
There shouldn't be much waiting around. I know hospitals vary but we seem to get seen promptly and the whole process takes just less than an hour. We do have a 4 week wait though to get the brace which is trimmed at the next fitting.
It's great Immy has got such a positive outlook, it will help when she gets the brace but it could be a shock if Megan was anything to go by. We bought her a rabbit at the time she got her first brace and he was a godsend. Everytime she got tearful she would go and stroke the rabbit- her brace bunny. Her friends were also great as she seemed to forget about the brace when distracted. She has been brilliant since and just gets on with things.
Sam

RosieRich
30th May 2007, 12:12 AM
Ps
Off course I'm not suggesting everyone getting a brace has to get a rabbit!

BeckyH
30th May 2007, 10:13 PM
i'm trying to think back to when i was cast: can't believe it's 6 years ago! i'm pretty sure i was sitting down, though that seems a strange idea given that being sat down warps the shape of your lumbar spine somewhat... but i'm pretty certain on it. i was cast at bolsover street and i remember it being really warm that day. i was 14 but my mum stayed with me when i was with the orthotist. i remember the cast feeling progressively tight as it hardened and i got a bit frightened because it was restricting my breathing, but like toni said, it didn't last long and i was really relieved to get it off!

for someone like me, it was just very strange. i've never (touch wood) broken a bone so i'd never been cast for anything before, whereas i'd imagine people like toni and other young kids sail through castings because they've grown up with it. i was given a bowl of water to clean off with afterwards, maybe get Immy to wear clothes which you don't mind getting a bit of stray plaster on them?

good luck. i hope she retains her positive attitude.

RugbyLaura
31st May 2007, 11:01 AM
Thank you everyone for your advice and for sharing your experiences. Immy was away on a sleepover when we got the appointment so I only told her last night. She was quite excited. I told her all about what you guys have said. She is still excited!

Laura X

ps dog and cat think bunny sounds a delicious idea!

RugbyLaura
1st June 2007, 05:51 PM
Hi,

Just back from the brace casting appointment. Fortunately, having been warned of what to expect (thank you guys!), the actuality was not too bad at all. We had a lovely Orthotist called Rohanna, she put Immy totally at ease. The plastering room really does look like a DIY enthusiast's shed (thanks Gerbo!), and was quite scary with drills and saws lying all over the place. Immy had to take off her clothes (except pants) and put on a vest made from thin fabric tubing. Rohanna then stuck some padding on Immy's hips to give a little room for movement & so that the brace won't rub. After this Immy had to sit on a bicycle saddle under a frame and had a sort of cradle strapped under her chin (they call it rabbit ears) which was attached to the frame. She sat with only a little traction while the first coat of wet plaster rolls were wrapped around her. More traction was applied and then a second coat. The whole procedure took about 20 mins, quick and painless. The worst thing was that Immy is very ticklish and found it hard to sit still! She actually quite enjoyed it, especially when the plaster warmed up.

Rohanna was pretty positive about the amount of correction Immy got through the traction, apparently her curve is very flexible. Her only concerns are the amount of rotation she has and that the curve is quite high for bracing. Although because it's quite a long curve, correcting the bottom may correct the top. They obviously don't promise anything and say that the brace is intended to prevent the curve progressing, not correct it. But I certainly got the impression that Immy's curve was a likely candidate for correction. Obviously we'll try not to get our hopes up.


Laura X

ps - she chose Bugs Bunny transfers, so instead of having a brace bunny she'll have a bunny brace :-)

GillyG
2nd June 2007, 12:01 AM
Glad to hear the appointment went well, Immy sounds like a very special little girl.

:squeeze: :kiss: :squeeze:

Gilly xx

stana29
25th June 2007, 12:31 PM
Hi there,
This question might sound silly but I am new to all the braces and casts. My daughter was told that she will wear a boston brace jacket. On that day they took her meassurements and told us that her jacket should be ready in 2-3 weeks but now I am reading all about the casts being done before having the brace jacket. Could somebody explain this to me please? Do you need to have a cast done in order to have a brace jacktet done or can they make your brace just with using the meassurements?
Any response is muc appreciated,
Kind regards,
Stana and Jessie (scoliosis, childhood cancer)
www.caringbridge.org/visit/jessicamagnus

gerbo
25th June 2007, 11:25 PM
there are various types of hard braces. Imogen (any many others) have had one "made to measure" from a plastercast. The Boston is another type which works with prefabricated components of different sizes. So measuring up should determine the size of your childs brace .

RugbyLaura
25th June 2007, 11:42 PM
Immy is currently wearing a spinecor brace though. This comes in different sizes and is taken home on the day of your appointment. She wears it with very little problems, in fact she wore it to her birthday party (at an indoor play centre) yesterday out of choice. I told her she could take it off for the party but she couldn't be bothered!

Pom & H (Scolioscott) came to the party too - thanks SSO for introducing us!!

Laura

RugbyLaura
2nd July 2007, 07:40 PM
Today Immy went for her fitting appointment for the rigid brace. (We have decided to carry on & get the brace even though we will be going with Spinecor if all is well. We just want to keep all options open until our follow-up appointment.) This appointment took about 10 mins in total, with a 2 hr 30 min round trip journey! The ortho put the brace on her, got her to lie on the table and then did it up. She then asked Immy to sit up which was impossible; she looked like an upsidedown woodlouse, arms & legs waving about! Ortho then drew marks where the brace needed trimming after which we we free to go. Back in 2 weeks to get the final version.

The brace looked enormous, I was quite surprised as those I've seen before have looked quite petite (Lucy's for example). I suppose it's because her curve is quite high (T9). I must say that we all felt very relieved that Immy is wearing her Spinecor brace.

When we have the rigid one I will post phots of both for anyone interested.

Laura

RosieRich
3rd July 2007, 03:54 PM
Hi Laura
Immy's appointment sounds rather different to the ones Megan has! When we pick up a new brace the appointment takes at least an hour and they do all the trimming there and then. The brace is put on standing, I don't understand why she had to lie down. With it trimmed to fit Megan has to sit so they can check that it doesn't dig in and also bend forward. Any tight spots can be flaired out, although we still need to go back with her latest one as it's not quite right. Even so to get Megan's right it needs 3 or 4 trips to the trimming room.
I am always amazed that there doesn't seem to be much consistency between one hospital and another where scoliosis is concerned, as another thread has recently pointed out.
Anyway all the best with the next appointment!
Sam

jennie
3rd July 2007, 04:57 PM
Hi, every one seems to be different, Em was plastered last week and we went to pick it up this morning. She lies down to try it on , then its trimmed , we go away for 45 minutes while they stick it down, then pick it up. She's really stretched in this one, so hopefully the ribs won't dig in so much. Em's back looks pretty similar to the girl in the youtube clip.

jennie
3rd July 2007, 04:58 PM
still unable to post photos,,, such a luddite

gerbo
3rd July 2007, 10:37 PM
that image of imogen as a helpless tortoise like creature on her back could be so funny (and made me smile a bit) but it reflects the tragic reality that these hardbraces, and the process of fitting them can be hellish (not for everybody fortunately). peronally I think that the large variety in fitting methods and approaches, reflect the fact that with regards to bracing there is little consistency, little science and lots of making it up as you go along without critically evaluating what exactly is being achieved. To me there seems to be a general "we do not believe in bracing so we cannot really be bothered about it" attitude amongst british consultants Truely a selffullfilling prophecy!!

That's all really, just felt like a little rant, feel better now. :soapbox: :soapbox: :soapbox:

RugbyLaura
4th July 2007, 10:18 AM
Sam - I assume, although I never asked, that the brace is put on whilst lying down so as to get the best correction. I think the spine is straighter when supine?? It could certainly be done up tighter when she was lying down. I don't know whether you're old enough to remember, but in the early 80s we used to wear ridiculously tight jeans; these could only be done up while lying on the bed!

Jennie - Have I missed something? Which youtube clip? Hope the new brace is as comfy as possible!

Gerbo, it was quite funny!! But mainly because she wont be wearing it. Thank God (OK, those Canadians) for Spinecor! What worries me though is the length of time this whole bracing process takes. I know I harp on about it but..... Bracing prescribed, 4 - 6 week wait for appointment, 5 week wait for 1st fitting, 2 weeks until brace ready. Total time taken..... 11 - 13 weeks. With this sort of wait during a growth spurt the curve could increase significantly. I hated this feeling of impotence!

Laura

jennie
4th July 2007, 03:53 PM
what I don't understand, well I suppose its the nhs all over, is how differently it goes for people in different areas. Em gets a brace within 2 weeks of needing one , more or less,,, the youtube clip was posted bypinkcandyswirl in general discussions and is called a video to share...I think em lies flat to have her brace done (plastered) so gravity doesnt have any effect? Not much room for food to go down though!

RosieRich
4th July 2007, 10:03 PM
Laura, Thinking about it it would make it tighter lying down although Megan can pull her brace tighter than I can anyway.(She can reach round and grab the straps) I just asked her about the lying down bit and she said "well I tighten it when I'm in bed anyway" How silly am I to not know that!
To continue the time comparision the last brace took 10 weeks from casting to fitting. It's ridiculus isn't it.
Jennie- 2 weeks is amazing, where do you go?
Sam

jennie
5th July 2007, 09:40 AM
We go to Chailey Heritage which is near Haywoods Heath, and she usually gets plastered there, this time, as she was in alot of pain we went straight to the othoptist in Lewes, and thats when it took less than a week from plaster to new brace. If we'd waited to get plastered with the physio it would have been 1 more week, but after talking with her she thought a week was too long to wait.

IHeartUxo
1st August 2007, 01:00 AM
Sorry, I can't really help you with that...
my doctor just did some measurements and was done.
Good luck!