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 remember the first time my mum & I went to the hospital for X-rays.

I came out feeling really sorry for myself, but a bit pleased that someone had noticed as I had been complaining of a sore back for years & had been ignored.

My mum looked at me & said "Listen good, lady, you take a look around you at these poor children in wheelchairs, barely able to move, & you thank god above that you can get out of bed in the mornings! You don't realise how lucky you are!"

She was right.

True.
She still lives at home, has all her shopping done, meals made for her, lunch boxes made for work, washing done, bed made, room cleaned and s on and so forth.
She is able to do these things for herself, but is too lazy to do so. Mum does everything!

My db has multiple disabilities - down syndrome, severe learning difficulties, non-verbal, incontinence, heart problems, mobility problems, etc. and scoliosis.

When he was about 12 the doctors discussed radical spinal surgery - rods, etc., plus braces and so on; but together they came to the decision not to proceed because of the severe and negative immediate impact on his quality of life. (At the time his life expectation was only about 6 more years.)

He is now 38 - and obviously medical techniques have moved on from then - he is still as mobile as he was (can walk very short distances - around the house - but not more). He has some respiratory problems and is prone to chest infections: obviously this is not improved by having reduced lung capacity from the scoliosis.

But in general I believe the decision not to treat was the right one for him even with hindsight.

thanks to everyone for sharing their stories.
that's interesting roisin, because my dsis is seriously considering not operating. dniece has ds and many but not all of the problems/restrictions you describe. she signs and speaks pretty well (her throat is shot from all the scarring - she was on a ventilator for a long time for various ops, and ended up with a trachy for many years). but generally she is pretty bright and on the ball. I think my dsis is trying to balance out the possible benefits of the op against the effect it might have on her ability to lead an independent life. she can communicate quite well at the moment and certainly has the potential to look after herself pretty well, but her mobility is very restricted. but a permanent trachy would be very restricting
sorrystill rambling ....

I have scoliosis, i refused to ware the brace when i was 12 and looking back now id do anything just to have it back to hold me in the right position! I have constant back ace and bad posture. Now i am 25 and i cant even get an appointment to go and get the surgery done which i know is a big procedure but i wish i had listened to everyone at the time