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Old 15-09-2011, 03:21 PM
MySon MySon is offline
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Default New kid on the block

Hi everyone, my name is Chris and my 14 year old son Dane is scheduled for surgery in Qld on 18 October. I am so scared . I have read so much on the web and feel overwhelmed having to make this decision that could have such an impact on the rest of his life.
Thanks for all your posts information helps. I have a couple of questions:
Did you all get second opinions? I don't want to doubt my Doctor who seems very good. Dane has 55 degree curve mostly at the top (sorry not real good with the correct terminology) I don't know until two days before the op how long the rods will be but it is an S curve so might be right down his back and I am told there will be two rods.
I worry about the screws, the operation etc etc.
Dane is worried about never being able to bend again? He doesn't sit well now, finds normal chairs very uncomfortable and likes to sit hunched (maybe that's part of my problem). I hope he is not going to be uncomfortable for the rest of this life.
His diet leaves a bit to be desired... Should I give him iron supplement before the operation? He doesn't have much weight on him so losing weight will make him skinny he is very tall and I am trying to get him to drink milk and eat as much as he can. Any advise to help strengthen him before the op?
I wish I didn't have to do it
Any help or advice would be tremendous. Kind regards Chris
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Old 16-09-2011, 12:02 PM
Kay Kay is offline
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Default Re: New kid on the block

Hi Chris,

We are new members to this site also, but have been reading the posts for quite awhile. Our daughter is due for surgery in November, so I can understand your feelings at this time. We did not get a second opinion, as our daughter's scoliosis was first noticed in Dec 2008, so we have been monitoring the progression of the curves for sometime now, which has given us time to develop a rapport with our Specialist (we are in SA).

Somewhere amongst all the posts on this site some members have recommended reading "Scoliosis Surgery. The Definative Patient's Reference" by David K Wolpert. We have recently purchased this book online and have found it to be an informative easy to understand guide.

Have you read the posts from" Doms Mum"? She has loads of good advice which has been beneficial to us for knowing what lies ahead.

All the best,Kay
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Old 16-09-2011, 02:55 PM
Georgia Georgia is offline
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Default Re: New kid on the block

Hi all,
I'm 16 and had my surgery 7 months ago in QLD too! We did get a second opinion, but since your son's curvature is quite bad, my guess is that it will keep getting worse even when he stops growing, because once it gets past about 60 degrees gravity starts to take a hold. But I'm no expert!
Anyway, surgery wasn't too bad (although this is 7 months down the track), and I have come out of it much more comfortable than I was beforehand. And you can also let your son know that I can touch my toes! I only had bolts and a rod down one side, as the surgery was done by keyhole. My only advice for diet and stuff is to make sure that he is healthy and reasonably fit going into surgery, as this makes recovery a WHOLE lot easier. If any of you have any questions whatsoever, feel free to message me!
Good luck,
Georgia
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Old 16-09-2011, 05:40 PM
MySon MySon is offline
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Default Re: New kid on the block

Thanks Georgia and Kay, It's just lovely to have people to talk with through this time. This site has given me a lot more confidence and yes I have read all the posts, some great stuff from Dom's Mum. Amazing stores and strengths. I'll keep you posted. Kay it's great you can touch your toes - I can't even do that and I have never had surgery well done. I will buy that book it sounds good.
I am trying to keep him fit and healthy however in my efforts to ensure he got out doing stuff last week he came off his push bike ending up in hospital getting stitches etc. I asked him if he was just trying to find out what hospitals were like - anyway those stitches come out this weekend and we have a couple more weeks before the op .

Please stay in touch occassionally it feels great to have support
Many thanks Chris

Last edited by MySon; 16-09-2011 at 05:46 PM. Reason: a couple of extra things
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Old 16-09-2011, 09:37 PM
Angela Angela is offline
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Default Re: New kid on the block

Hi Chris,

Welcome to the forum. My daughter Cate had surgery in March this year. She had a thoracic curve of over 50 deg and a lumbar curve of 38 deg.
She is fused from T5 to L1 and has two rods. I know how you feel, it is a big worry to be told they need to have surgery to correct it, but now it is all over it was the best decision we made. Her spine is now straight and derotated, she has no pain like she had before the surgery.
Your son will be able to bend after having the surgery. Cate does ballet and other dancing and she is now able to do most of it except bend backwards. She is able to bend over to touch her toes. She had 7 weeks off school and gradually went back part time and then full time. At first she found the chairs at school uncomfortable if she had to sit for too long, but now she is back to normal. We are seeing the surgeon again in two weeks for a 6 month check, and have more xrays of her spine. Maybe you should ask your doctor about iron supplements. Cate lost a litre of blood during the surgery but had 250ml recycled back to her with the cell saver system. She is also tall and thin and became a bit anemic after the blood loss.
Don't worry, I'm sure everything will be alright. You have a lot of support here from everyone. If you have any questions or worries don't hesitate to ask. Keep us posted.
Take care,

Angela.
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Old 16-09-2011, 10:05 PM
Christine Christine is offline
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Default Re: New kid on the block

Hi Chris

I have the book sitting here awaiting a new reader, so please do send me a private message with your postal address if you would like to borrow it. It may help Dane prepare and he won't be bogged down in medicalspeak as it is presented in an uncomplicated and very easy to read manner!

Hugs to you and your boy Dane. I have a son, my only child. I love him to bits so my heart goes out to you.

Christine xxx
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Old 17-09-2011, 07:24 AM
sueham sueham is offline
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Default Re: New kid on the block

Hi Chris
Welcome to the forum. I and many others here know exactly what you're feeling. We didn't notice our son's condition until earlier this year, when his curves were 48 and 60, I still can't believe we didn't notice earlier. We didn't seek a second opinion as I completely trusted the specialist and had done enough reading to know that surgery was the only option for curves that severe. Having said that, a second opinion can't hurt can it. He had his surgery 3 weeks ago and is doing really well. We didn't do anything different leading up to surgery, Jake is also skinny (very common with scoliosis kids for some reason it seems) and he lost 5 kilos, but it's slowly going back on. I would suggest you keep a list of questions for the next time you see your surgeon.
Take care, Sue
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Old 17-09-2011, 04:25 PM
MySon MySon is offline
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Default Re: New kid on the block

Thanks Angela - this sounds similar to Dane - I hope you and Cate continue to go from strength to strength. My main concern right now is that Dane had his stitches removed from his bike accident today and there is a little bit of infection - he has already had some antibiotics and I might have to put him on more if it is any worse by Tuesday - only 4 weeks to the operation might let the specialist know. I will keep my updates going - I so appreciate this new found friendship and support network
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Old 17-09-2011, 04:27 PM
MySon MySon is offline
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Default Re: New kid on the block

Thanks Sue - great to speak with someone who has a boy with scoliosis - so many questions when they say boys with left sided thoratic curve are unusual. I am passing all the information I read through here onto my son - it is a tremendous relief for me I really appeciate your posts. Let us know how Jake progresses. Looking forward to staying in touch - maybe one day our boys will chat via xboy or something?
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Old 17-09-2011, 04:31 PM
MySon MySon is offline
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Default Re: New kid on the block

Hi Christine (always nice to meet someone with the same name) you sound a lot like me - full of love for our kids - thanks for the hugs and kisses - I really needed them this week with only 4 weeks to go I seemed to be having more sleepless nights and quiet sad moments where I felt very alone having to be the strong Mum and to stop sounding hesitant and preoccuplied with my friends and family. I am cooking roast beef tonight - trying to get some red meat into him. I'll keep you posted.
Thank you so much for the support I'll send a private message with my address to borrow your book. Ta Chris x
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