Help please

gunsandbanjos

Hi fab n funky mum, is it the scoliosis strength in the curve group for parents you use? If so I'm on that too:) it's been a god send. Just wish I'd found it sooner, so much great information and support.

Glad your daughter is doing well, it's a scary journey for both the kids and the parents.

System

Hi gunsandbanjos, that it the groyup I am on :-)
I posted a pic of my daughter this morning. She is looking frighteningly grown up in a black party dress.
The pose and the angle of the shot make her look about 10 years older! But it does show how straight she stands and also that she is happy to wear a little strappy frock with no concerns about her scar (T4 - L1)
Linda x

gunsandbanjos

Wow, she looks amazing!!

onlyroz

Hi, I don't know your history but I had scoliosis surgery 18 years ago (wow I feel so old). I'm not sure how treatments have changed since then (I have two Harrington rods still in place) so I'm not sure what you mean by "she has no instrumentation in her back any more". How old is she and what is planned regarding her treatment?

gunsandbanjos

onlyroz wrote: »

Hi, I don't know your history but I had scoliosis surgery 18 years ago (wow I feel so old). I'm not sure how treatments have changed since then (I have two Harrington rods still in place) so I'm not sure what you mean by "she has no instrumentation in her back any more". How old is she and what is planned regarding her treatment?

Hi onlyroz, she is nearly 11.

She has congenital scoliosis with hemivertebrae, had a spinal fusion done at 11 months old. Then growth rods aged 2.5 with lengthenings done every 6 months until April of this year when they were removed (hence no instrumentation now). She will have more rods put in next year and a further fusion done. Currently she's wearing a Boston brace to hold curve until final surgery.

She's a little better today, still not great but managed with just ibuprofen and paracetamol.

onlyroz

Oh dear the poor thing. My own scoliosis was idiopathic and I didn't exhibit symptoms until my teens, and had the surgery when I was 16. I can't imagine what it would be like to undergo multiple surgeries over a number of years. I can't really advise on pain relief for youngsters - presumably her consultant can help with that. Hopefully the end is in sight and no more surgery will be required once puberty is over? For myself I can say that I don't really think about my scoliosis any more. Sure I get more stiff and have a few more aches and pains than a "normal" person, and I'll never go bungee jumping, but other than that I don't think my lifestyle has been impeded.

Edit - I can second having a good memory foam mattress and pillow. Tempur are still the best although they cost a fortune. I suffer the most when I'm on holiday and the mattress and pillows are poor.

gunsandbanjos

onlyroz wrote: »

Oh dear the poor thing. My own scoliosis was idiopathic and I didn't exhibit symptoms until my teens, and had the surgery when I was 16. I can't imagine what it would be like to undergo multiple surgeries over a number of years. I can't really advise on pain relief for youngsters - presumably her consultant can help with that. Hopefully the end is in sight and no more surgery will be required once puberty is over? For myself I can say that I don't really think about my scoliosis any more. Sure I get more stiff and have a few more aches and pains than a "normal" person, and I'll never go bungee jumping, but other than that I don't think my lifestyle has been impeded.

Edit - I can second having a good memory foam mattress and pillow. Tempur are still the best although they cost a fortune. I suffer the most when I'm on holiday and the mattress and pillows are poor.

Thanks:) glad you are out the other side of your surgery without too many restrictions - who wants to bungee jump anyway?

My daughter is loving having her growth rods out as she can do all the things her friends do for the next year:D growth rods are pretty restrictive as they a really high tension on them they tend to snap if jarred:eek: so no trampolining, ice skating, jumping etc. anything that's likely to cause any kind of impact is out. Which for a tomboy little girl pretty much sucks.