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  #1  
Old 17th May 2009, 08:46 AM
Rachie's Avatar
Rachie Rachie is offline
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Default Brace problems

It is 6 months since Maddy had a new brace and her next op is not until July as she broke her rod at the end of last year and so had an extra operation.

She has grown so much that it was obvious she would not last until July for a new brace so GOSH kindly arranged for her to have a new one. We picked it up on Friday and when I saw it my first thought was "my girl has hips!", as there is a very obvious waist on this one instead of the usual up and down of a young girl. They trimmed it up as usual and she was fine in it. We went for the psychologist appointment and she was fine in it. Just before we went home I checked she was fine in it and she was so we went. Half way through her tea she started complaining that it was hurting, so after tea we took it off and she had pink marks on the top of her pelvis each side where the brace goes in and also a pink line all the way down each side of her truck where the brace meets. I've tried putting it on her a few times since and she says it hurts every time! So much so that she will only wear her old one!

I'm confused! She always loves getting a new brace as it is more comfortable than one that is getting small. Does anyone else have a brace that is an hour-glass shape and how does it feel?

I know I'm going to end up going back, but it's such a fag as it means more time out of school for Maddy. Plus my son has a hospital appointment this week so I have other things on my mind and I'm completely fed up with hospitals!!!

Rachie x
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Mum to Maddy aged 13. Maddy is a patient at Great Ormond Street Hospital and had a growth rod inserted in November 2007. In March 2011 the growth rod was removed because the curve became too strong. In May 2011 Maddy had anterior release, 2 weeks traction on a Stryker Frame and then spinal fusion.
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  #2  
Old 17th May 2009, 09:12 AM
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BeckyH BeckyH is offline
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Default Re: Brace problems

oh rachie

i only ever had once brace, before i had surgery, and because i was 14 when i was cast for it it had hips (even though i wasn't very hourglass at the time, i was completely pear-shaped until i was 16/17 and filled out a bit more in the bust!)

i don't think i'm much help here, because mine never hurt around the hips, just around the waist if i ate too much (it's like wearing a really tight dress, you don't have any room to bloat in it) and if that happened i just loosened it off until i'd digested some of it.

sorry i can't be much help maybe maddy's noticed the difference in the shape too and is self-conscious? though as she's got pink marks it's obvious that it's not purely a psychological problem (if at all). maybe that as with a lot of things the skin needs to toughen up a bit and there will be a bit of discomfort to bear? a bit like wearing in a new pair of shoes.
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Diagnosed in March 2001 by family GP after my mum noticed an asymmetry in my spine. Referred to a consultant at the RNOH, Stanmore and started attending consultations for x-rays twice a year. Prescribed a TLSO brace to be worn 16 hours per day. Began with double major curves at approx 48 degrees. Offered surgery in 2003 aged 16 and declined to continue with school. Requested surgery in 2005 instead. Had T11-L3 fused on 16th July 2005 and haven't looked back! Released for all activities in March 2006, having been driving and riding horses with consultant's permission since 7 weeks post op.
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  #3  
Old 17th May 2009, 09:26 AM
Larissa's mum Larissa's mum is offline
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Default Re: Brace problems

When Larissa wore her brace she would have red marks on her hip every time she took it off and down one side, when she got her second brace it was alot more uncomfortable than the first one, but as I was told Larissa's body had accepted the previous one and now has to adjust to a bigger one!. We did however has to go back a couple of times where sections needed to be filed down and adjusted as even though the braces are uncomfortable there should be no pain as such.

Hope this has helped.....good luck
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  #4  
Old 17th May 2009, 01:06 PM
Ryansmum Ryansmum is offline
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Default Re: Brace problems

Rachie was she cast for it or was it from a preformed one? Ryan's old braces before Stanmore had 'hips' as they were preformed and he had trouble with his hips on these ones.
So sorry to hear its not very comfy for her,it's awful when that happens
Dee XX
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  #5  
Old 17th May 2009, 04:53 PM
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Rodsrme Rodsrme is offline
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Talking Re: Brace problems

Hey!
I wore a body brace for 18 months when I was 12 - 14. I didn't have growth rods...so it may 'ride' different than mine did. Mine used the hips as an anchor and put pressure on one of them to help push the curve. I would have red marks across the hips, my back were the pads were pushing on my curve, and underneath my arms. The pads were so aggressive on pushing on my curve it would leave huge bruises on my back. I would say the pain is just breaking it in...like a pair of shoes. I went through it with each of mine. Once I broke them in then I was fine. So I would try to get her to wear it and maybe give her a painkiller to take the edge off or gradually break in to it. Have her wear her new one for as long as she can possibly can stand and then put her back in her old one for support. Leave her in the old one for an hour or two and then go back into the new one for as long as she can stand and that time should gradually start getting longer until she's in it full time. Hope this helps!

Here is a pic of my braces...is her hips in the brace kind of like these?

http://i640.photobucket.com/albums/u...me/lala303.jpg
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Dx '06 adolescent idiopathic kyphoscoliosis T6-T11 upper 40 deg T12-L4 low 35 deg. TLSO brace for 18 mo. surgery '08 upper 28 deg. low 31deg. Had lamenectomy with decompression done 6/5/13 on L4,
L5, S1. Also have
osteoarthritisis, spinal stenosis, and DDD all in lumbar spine...
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  #6  
Old 17th May 2009, 08:02 PM
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Rachie Rachie is offline
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Default Re: Brace problems

Here are images of the brace. My confusion is it is not a corrective brace so it doesn't need to put pressure on anywhere and all her other braces have been comfortable.


http://i604.photobucket.com/albums/t...0/P5170588.jpg
http://i604.photobucket.com/albums/t...0/P5170587.jpg

Rachie x
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Mum to Maddy aged 13. Maddy is a patient at Great Ormond Street Hospital and had a growth rod inserted in November 2007. In March 2011 the growth rod was removed because the curve became too strong. In May 2011 Maddy had anterior release, 2 weeks traction on a Stryker Frame and then spinal fusion.
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  #7  
Old 17th May 2009, 08:14 PM
andrea andrea is offline
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Default Re: Brace problems

Hi Rachie

I'm sorry Maddy is so uncomfortable in her brace. It makes for a much harder life doesn't it? Erin's braces have always been shaped like this (although Erin's looks a lot longer than Maddy's - perhaps that's just the photo) - in fact, I kind of rely on the "waist" to know I'm putting it on right. In the early days I used to ask her to put her hands on her hips so I could line the two up. It's also useful in holding clothes up! She's never found them uncomfortable (although she desperately needs a new one now), but maybe that's because that's what she's used to.

I know it's a total faff, but it sounds like you're going to have to go back for some adjustments Not what you need right now.

On the plus side, I like the velcro straps and the fact that they're not flapping around, like the ones Erin has are. I keep having to tuck them into her knickers.

I hope your son's surgery goes well.
Take care
Andrea
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Mum to Erin, 10, diagnosed with 62 degree curve in May 04, aged 21 months. Serial casting '04-'07. Growth rods inserted June '08 under Mr Tucker at RNOH, Stanmore, UK. Surgery October '11 to replace a broken rod.
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  #8  
Old 17th May 2009, 08:15 PM
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Rachie Rachie is offline
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Default Re: Brace problems

Quote:
Originally Posted by andrea View Post

I hope your son's surgery goes well.
Thankfully it's just a consultation.

Rachie x
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Mum to Maddy aged 13. Maddy is a patient at Great Ormond Street Hospital and had a growth rod inserted in November 2007. In March 2011 the growth rod was removed because the curve became too strong. In May 2011 Maddy had anterior release, 2 weeks traction on a Stryker Frame and then spinal fusion.
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  #9  
Old 17th May 2009, 11:27 PM
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madmclw madmclw is offline
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Default Re: Brace problems

Can you take the same sort of photos of the old one for comparison? I really wont be much help at all, but I'm kind of interested to see the difference, if that's ok.
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Diagnosed with adolescent idiopathic scoliosis on the 10th April 2007. Seen at the Child Development Centre at the Medway Maritime Hospital on 18th June then referred to Mr Noordeen at the RNOH Stanmore. Seen by consultant on the 13th July x-rays revealed 77o thoracolumbar curve and severe rotation. Surgery planned in 6 months had surgery on 26th November 2007. Admitted for pre-op on 23rd stayed in over the weekend. Curve then 90o, suffering from pain and reduced lung function. Moved from HDU to ward after 24hrs, then into isolation for suspected infection after 3 days. Symptoms turned out to be a bad reaction to antibiotics.
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  #10  
Old 18th May 2009, 02:09 PM
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Rachie Rachie is offline
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Default Re: Brace problems

Here are some photos previously taken of the old brace (customised with HSM stickers!). There is some moulding inside it which goes in slightly at the waist but you can see it looks a completely different shape to the new one.

http://i604.photobucket.com/albums/t.../braceback.jpg

http://i604.photobucket.com/albums/t...bracefront.jpg
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Mum to Maddy aged 13. Maddy is a patient at Great Ormond Street Hospital and had a growth rod inserted in November 2007. In March 2011 the growth rod was removed because the curve became too strong. In May 2011 Maddy had anterior release, 2 weeks traction on a Stryker Frame and then spinal fusion.
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  #11  
Old 18th May 2009, 02:23 PM
andrea andrea is offline
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Default Re: Brace problems

Her old one is very straight isn't it? I can see why she might struggle with the new one. Her old old one (the butterfly one) looks more shaped, unless that's just the picture? Erin's looks more like that.
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Mum to Erin, 10, diagnosed with 62 degree curve in May 04, aged 21 months. Serial casting '04-'07. Growth rods inserted June '08 under Mr Tucker at RNOH, Stanmore, UK. Surgery October '11 to replace a broken rod.
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  #12  
Old 27th May 2009, 10:21 PM
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Rachie Rachie is offline
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Default Re: Brace problems

Hey guess what? I managed to put on Maddy's brace without it hurting her...for 2 days running...! The front is cut lower than her previous braces and I was putting it on too high! Doh!

Anyway, our appointment was for tomorrow so now we don't have to go!

Rachie x
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Mum to Maddy aged 13. Maddy is a patient at Great Ormond Street Hospital and had a growth rod inserted in November 2007. In March 2011 the growth rod was removed because the curve became too strong. In May 2011 Maddy had anterior release, 2 weeks traction on a Stryker Frame and then spinal fusion.
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  #13  
Old 30th May 2009, 08:34 AM
andrea andrea is offline
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Default Re: Brace problems

I'm glad you got it sorted just in time Rachie! And more importantly that Maddy is now comfortable in it! xx
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Mum to Erin, 10, diagnosed with 62 degree curve in May 04, aged 21 months. Serial casting '04-'07. Growth rods inserted June '08 under Mr Tucker at RNOH, Stanmore, UK. Surgery October '11 to replace a broken rod.
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