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Need Advice Grow rods surgery for scoliosis - Parent-2-Parent & Reflux in Children
Grow rods surgery for scoliosis
Wednesday is a big visit to the orthopedic surgeon for Nicole.
She has a pretty big S curve in her back--80 degree curve upper and 65 lower.
She's been wearing a back brace 23 hours a day for more than 2 weeks now and the doc is going to x-ray her in it to make sure it's working.
If it isn't, he's said he wants to place growing rods (not sure exactly when), which would mean repeated surgery until she stops growing, then a fusion.
Has anyone's child had/has the grow rods?
What was the recovery time and discomfort like?
Any regrets or advice?
Thanks.
We're praying hard that this won't come to surgery, but we're taking things as they come.
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Re: Grow rods surgery for scoliosis
I think you are talking about the VEPTR surgery.
Its pretty common in the VACTERL world due to the high incidence of vertebral abnormalities.
Usually they are titanium rods inserted and lengthened as the child grows.
Eithene doesn't have severe vetebral issues so I personally don't know much about the VEPTR rods, but I do know several families who have them- all have had very positive experiences.
I hope you can avoid the surgery, but I do know that there are a lot of positive stories out there.
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Re: Grow rods surgery for scoliosis
Yes, could be veptr or harrington rods.
I would suggest reading the message forums on the veptr site
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They also have some great information on there.
There is also a few veptr surgery videos out there.
When and if Hailey's spine progresses this is what we will get.
Do you have an x-ray of her spine?
I can tell you that I've become good friends with a few mom who has kids with the veptr.
The first surgery is a longer stay about a week but the lengthening surgeries are only max 3 days.
They are in a good bit of pain so pain management is key after each surgery.
PM me and I will give you the info to one friend who has some awesome before and after pics.
She's also a wealth of information :)
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Re: Grow rods surgery for scoliosis
Daniel doesnt have the growth rods he has harrington rods as he was 14 when he developed it ,the surgery was 8 hours last time for him .He did fab thou and came home after 1 week only .The key for him was good regular pain relief ,we kept it up until about 8 weeks before we dropped it down
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Re: Grow rods surgery for scoliosis
Thanks for the input!
Well, it was a good appointment today.
Nicole has grown...4 INCHES since December!
Her curves improved 8 degrees.
The surgeon wants to see her again in 4 months to monitor things.
The hope is to keep the curve from getting worse and hopefully see more improvement.
He's still thinking surgery at some point, but it's not an emergent matter and can bear some monitoring.
The other side benefit of today's visit...no more AFO's!
Nicole honestly hasn't been wearing them for a couple weeks now--she just couldn't balance properly with them and the back brace, and her feet are more stable these days.
Still has flat feet, but they don't seem to bother her.
So, nothing at all for now, other than sturdy shoes!
Nice, since she was going to be due for a new set soon.
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Re: Grow rods surgery for scoliosis
Yeah!
Awesome news on the improvement in her curve and no longer needing AFOs!
I hope it continues to improve and you can avoid surgery.
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