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Old 29-06-2016, 07:20 PM
Melster321 Melster321 is offline
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Hello Everyone

My name is Mel and my 14 year old daughter was diagnosed with AIS last October. At the time her upper curve was 43 and she has a smaller 'compensatory' curve in her lumbar region. I'm riddled with guilt for not noticing earlier (in fact I can't believe I didn't as she's a dancer and is regularly in skimpy clothing). So, either I'm unobservant or it developed really rapidly.

At her last check up her curve was 47, and we were (rather unceremoniously) told that it is very likely that she will need surgery. The specialist was very casual about it; I on the other hand was horrified. The idea of my child having surgery on her spine is pretty frightening. My daughter is taking it very well, much better than I'd have expected.

Can anyone offer any words of wisdom?

Very glad I found this site.

Cheers,

Mel.
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Old 30-06-2016, 08:34 PM
Dom's mum Dom's mum is offline
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Hi Mel,
Welcome, although I wish you didn't need to be here. It is just overwhelming when your child is first diagnosed, they are the most precious thing in our world and we just want everything to be ok for them. Our son was diagnosed at 15 and was in the 50s (with a compensatory curve) with surgery the only option. How had I not noticed? The guilt was overwhelming. In hindsight I think I had noticed things...like his tshirt seemed to be crooked, maybe a little bit of me was in denial. But at that age you don't see them undressed, especially boys and it was only one summer night when he came out in boxer shorts that I really noticed.
Five years later after spinal surgery and two chest surgeries (another problem) he is loving life and looks so well. he is enjoying tennis and amazingly is studying to become a personal trainer. It isn't easy but I think they recover much better than we do.
As for the doctors matter of fact attitudes to surgery...We had wonderful surgeons but I think they see people all the time that need surgery so it is logical to them. In a way that is reassuring because we know they are in good hands but I did once remind a secretary that while she might deal with this every day we are individual parents and children and need to be treated as such!
Please feel free to ask any questions
Take Care
Annette
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Old 01-07-2016, 08:16 AM
Melster321 Melster321 is offline
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Hi Annette

Many thanks for your reply, I really appreciate it. The guilt is overwhelming. I actually have a very minor case myself (8 degrees), so you'd think I'd have been more proactive in having her screened, but it's never been a bother so I never thought about it.

I'm so pleased to hear that your son is doing so well! You're right about the surgeons' attitude, it is their 'every day normal', but not so for us, as you say! In fact, my daughter said, 'I'm glad he's casual about it- I wouldn't want to trust him if he was unsure or nervous'. Of course she's right.

We see the surgeon again at the end of the month. Depending on progression we might be given a date. We'll see. In terms of questions, can I ask what state your in? Also, do they surgically correct the compensatory curve?

Thanks again for responding

Mel.
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Old 07-07-2016, 06:55 PM
Dom's mum Dom's mum is offline
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Hi Mel,
That is great if your daughter feels that way about the surgeon, I think they often cope better than we do. Yes they do straighten both curves. Dom looked amazing and gained 5cms in height from his surgery.
I really dropped the ball with my kids...my mum had really severe scoliosis, I just never thought of it with my boys. They never publicise it with boys and I think my head was just in the sand. Our other son had physical issues from birth and Dom was our "easy" one. The guilt is awful but I think it just comes with being a parent, we are our harshest critics.
We are in NSW and had a local option for surgery but after research travelled to Sydney.
Take care and keep us posted
Annette
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