Growing Rods?

[IluvHannah]

:) Hi, this is my first time writing on NSF. My daughter, Hannah, was diagnosed earlier this year with idiopathic scoliosis. She has an s curve and is now at 60 degrees and 43 degrees. We know she needs surgery. We are looking into growing rods versus spinal fusion because she just turned 9 years old. I would like some feedback/input on the growing rods if anyone has any. Thanks, Agnes :)

[marmyte]

hi agnes - although my scoliosis is the adolescent type, there are two other scoli patients in the village where i live. one is adolescent like me and the other has congenital scoliosis and for a little over two years has had growth rods in his back. all three of us have the same surgeon - my surgery is complete, the other teenage girl is on the waiting list and the boy with growth rods is hopefully keeping his current rods for a little longer before he has fusion.

have your daughter's doctors suggested growth rods as a treatment for her? it depends where you live, who you see and what their attitudes are. the boy i know was having his rods adjusted (they literally open you up and crank something to extend them - sorry that's a bit graphic but i don't know the technical terminology) every four months but is waiting six months this time before he has it done again, and it's working for him.

i doubt any surgeon would want to fuse your daughter at 9 years old and i guess that with curves this size a brace may not be effective in holding the curves until she is 12 or so. i'd be interested to know where you're from etc and maybe i can remember some more stuff about the people i know to help a bit more.

it's worth noting that the boy i know has more problems than scoliosis - he's had many surgeries already (he's 13) for various things and so sometimes his surgery gets a little complicated

[Nicky's Mom]

Hi Agnes,
You might want to try researching the VEPTR procedure, as well as the growing rods. Would hate to see Hannah fused at 9 years old, except as a last resort.
Cathy :)

[IluvHannah]

Thanks for your reply. We live in the US, Northern California. We've seen three different surgeons. Her curves are too large for bracing, they pretty much felt it would not help. The surgeon we are going to talked about lengthening the rods every six months, which is an usually an outpatient procedure. Ideally we would try and keep the growing rods in as long as we can, I would guess to 13 or 14 years old. If this is what we decide to do, it is not going to be easy on her. She is already very anxious about having one surgery, let alone many more. How long has the boy you know had the growing rods in? Thanks, Agnes :)

[IluvHannah]

Cahty,
I have read a little about the VEPTR procedure on these forums but don't know much about it. I'll look into it though, thanks for responding.
Agnes

[Carmell]

Agnes,

Welcome to the board. My son is now 10yrs old and is a VEPTR patient. I'd be happy to share our experiences with you. It is very important to understand the complexity that goes with scoliosis and young children. Feel free to email me at boulderfam@hotmail.com. I can share with you what I know about the differences between the growing rod and the VEPTR device. Each has a time and a place. Hopefully if you can be as educated as possible, you will give your daughter the best outcome possible.

My best!

[marmyte]

the boy i know had his growing rods inserted in june 2003 and his parents are keeping everything crossed that he can have them for another 18 months and then be fused, but it's very complicated for him and he may not make it that long. this summer he came off the hooks at the top of his spine and had to have the instrumentation totally replaced, the surgeon said after this that if it happens again, he'll have to fuse him because if it keeps happening, he'll damage his vertebrae too much. i think this is pretty rare - he has learning difficulties so it's impossible to get him to sit or lie still so that he doesn't damage the instrumentation and his mum is terrified for when the time comes for fusion. i don't know much more about it i'm afraid, juvenile scoli isn't my strong point as i was always an adolescent patient myself

[Carmell]

Agnes,

I replied to your email. I hope you got it. Let us know how things are going.