wearing a back brace for scoliosis - any experiences and especially positive stories to share....

[harpsichordcarrier]

I just had a phone call from my dsis telling me that dniece (previously diagnosed with scoiliosis/curvature of the spine) will have to wear a back brace for the next five or so years while she is still growing before having surgery.
She is incredibly down about it. dniece has severe physical and learning difficulties (she has ds, mobility restrictions,is fed through a tube among other things). In particular, dsis is really down about the continued restrictions on mobility - dniece can't walk but can shuffle around on her bottom and even get downstairs if she wants to which has been a real relief for dsis as carrying her around has been a real strain on her. She is worried that the brace will stop her independent movement altogether.
I am trying to stop her googling but in any event lots of the information out there is pretty general.
Does anyone has any experience of living with a brace? I know there are different sorts of braces - is it worth swapping around to see if different sorts suit her better? anyway, thanks for reading if you got this far.... I am going to cross post in special needs too, so sorry if anyone sees this twice

I have scoliosis, and had surgery on it in 1982, when the surgery was still fairly new, and most people wore braces as the entire treatment.

Do you know why she has to wait until she has stopped growing to have surgery? I was 12, and was definitely still growing (they continued to moniter me until I stopped)

Re restricting monility - I wore a full body cast for 6 months after the surgery, and it didn't affect my getting around. I struggled to put on shoes and socks initially, but found a way. I would guess that if your niece manages to get around now, she will adapt to a brace.

thanks Jelley.
I have only spoken to her briefly but I think the brace is a stop gap until she stops growing and then there can be a more permananet solution.
I am sure you're right, that it is possible to work around the brace and still have mobility

Just an update for anyone who was kind enough to offer me advice before.
dniece has been wearing her brace for a while now and went back for a check up today the consultant said she is much worse and he wants to put in a rod in the next 6-12 months . even worse the usual procedure is to do a tracheotomy about six weeks before this is really worrying as dniece is subject to scarring and has had loads of problems with scarring in her windpipe. she had a trachy for years and it took several operations to rebuild her windpipe and now breathes independently.
I am just so worried about what this means for the future for her. it sounds like the op itself is difficult and gruelling and she is looking at several months of recovery.
on the upside, dsis said the consultant was very good with dniece and treated her with respect. (she has ds and her speech is very indistinct) He made a real effort to speak to her and understand her. Dsis is relieved because she worries some doctors don't really appreciate what great girl she is and how much these things really matter. she was upset she had taken her in her wheelchair, thinking she should have let her walk (she uses a frame) so he oculd see how hard she has worked to get mobile.
finding it very hard to find anything positive to say to my sister.
sorry for long ramble.

hi harpsi
unfortunately I have no advice to give, but just wanted to let you know how sorry I feel for your dsis and dniece.

I hope things will look up for them very soon.

HC I am so sorry to hear this

I don't know anything relevant I'm afraid, just wanted to add my best wishes. I suppose the only thing I would add is that you should just be your funny, loving self around her and give her reasons to smile and things to look forward to.

I am very worried about her tbh.
she is a very positive and lovely person and she has been through so much. and this is just a kick in the teeth.
she said to me "this is just so unfair. I mean to say I GET THE POINT NOW!"
I think she is angry at god . she was also talking about the time when she thinks the brain damage was caused, when dniece was gone, effectively, and they had to use the paddles .

It is bloody unfair. It's a terrible, cruel raw deal. I would be raging at God in her position, if I believed in him. HC, what you are good at IMO is being supportive, and empathic, and kind, and listening, and she will need a lot of that.

HC, do you know what sort of brace?
I wore a back brace for scoliosis for quite a while in my teens... how old is your niece?

So sorry .

I have no personal experience or advice but I do remember reading a Judy Blume book about it called 'Deenie' when I was a teenager - it may help her to read it.

There is a bit about the book here

Sympathies. I have scoliosis, which was never treated (when they said, come back if it hurts, I thought they meant severe pain rather than the constant dull ache) and am now too old for anything apart from working on my posture a bit: surgery after about 18 is brutal and drastic - though it's not much fun before that either. A posture brace might not look too good but it will help in the long run and I now wish I'd had one.
A school friend of mine had surgery at the age of 15 and was in hospital for months but much better afterwards - and this was in about 1980, so things should have moved on a bit since then.

Yes, I wore a brace in the 80s and thought that they tend to avoid them nowadays. The type of brace you get also depends (or at least it used to) on your age. I wore a hideous one (which went up to my chin) until I had my first period (14) and then a more wearable one (chest) until I was 16 I think.. From 14 to 16 I had to wear it day/night. I don't really know what kind of impact it could have with your niece mobility. I'm so sorry she has to go through this as well.

thanks everyone.
she has been wearing the brace for a couple of months only but it isn't solving the problem .
she is thirteen

do you mean that her spine is still rotating despite wearing the brace?
Btw I had to wear the brace day and night for nearly a year (if I remember well) before things started to improve (not that my scoliosis has been a 100%treated, it's still curved, and I've been suffering horrible backaches since having dd).

oh HC, i dont know what to say. this must be so hard. i hope the op's go well.

yes, it is getting much worse apparently and they are concerned her ribs are going to touch her hips (not sure how this is even possible but it sounds horrific)
sorry to hear about your ongoing problems franca.

thanks misdee
dsis said she was chatting up the consultant she is quite something, my dniece

I have scoliosis.

Complained about back ache for years & it was finally spotted at a school check when we had to bend over & touch our toes.

School said it would have been easily missed when I was born as it wasn't reallt routine to check then.

I have constant ache, my vertabrae all stick on top of each other & I ache all over. I sit hunched up & my shoulders are tense all the time.

Anyway, the point I was going to post (before falling into a self pitying waffle) was that a girl where I used to live had the op & she was walking after a short time. She was a bit stiff for a while, but now, a few years later she is the most stunning girl, she walks upright & her mum told my mum she never complains of pain anymore. Your niece sounds like a very strong wee lady & I wish her the best for her operation xx

Her ribs could effectively touch her hips.

The way the consultant described it to me was that my ribs are tilted to the side, like an umbrella. Imagine your ribs being an umbrella and tip to the side.... if that makes sense.

I really hope they'll find the right treatment for your lovely dniece, scoliosis is really evil, and can improve/get worse dramatically during the early teen years because the bones are not "mature" yet. keep up posted.

keep us, obviously

thanks everyone, it is really helpful to hear from you all and thanks for your support
HC xx

Will read through this thread in a mo, but will pass on what I know.
My sister was diagnosed with this from the age of 20mths, she was in a plaster cast - looked like it was a vest obviously very heavy for a little one. She had this changed regularly and a new cast was put on. Then she had a plastic 'jacket' this went under her arms down to her waist, fastened via velcro at the back, tightened a bit at a time. then they added a chin rest to another version of the jacket, then reverted back to the one without a chin rest.
She was then referred for surgery to have the rods inserted. She went through several pre ops and deflated one of her lungs iirc before they discovered that her spine and bones would not be able to cope with the rods and wires. She had had several ribs removed too I believe in preperation for the original planned surgery.
As a result, all they could do was fuse the spine to stop it from curving further. She had many months in Souhampton hospital.
If they had done the sugery, she would have ended up in a wheelchair.
She hasn't grown much, not sure of her actual height. She has a really obvious 'hump' for want of a better word on her left side by her shoulder blade.
She is still coming to terms with it all and is still angry that the Dr's said she could be 'cured' and she isn't. She sufferes from depression and often wraps herself up in a fantasy world, gets really involved in reading, writing and follow's a certain 'pop star' on tour around the UK. This I guess is her mechanisam for coping.
She is 24 this year.

Yes, the ribs will rotate and could touch the hip (may explain removal of some of her ribs). My sisters hips are not level as a result of this, and can only wear elasticated waists. She also has a corkscrew at the base of her spine which causes it to twist more.

Oh bursting bug. Your poor sister.

My shoulders are uneven, but no-one would notice unless they were staring at me.

She seems to have a more pronounced condition than anyone I've heard of.
Most people I know of have slight forms, or more treatable forms.
Her lungs are smaller than they should be too and she gets tired quickly.