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Scolimomof1
05-06-2009, 10:16 PM
Hello,
I am hoping that someone will help me with a few questions that I have. My daughter is 8 and we are facing having growing rods put in this summer. :( I am wondering if there is anyone out here that has or had them put in. I would so appreciate any response. I can not seem to find anyone this young and having growth rods put in. I am so worried about this whole situation and I feel if I had some knowledge about this, then it may help me deal with this...Thank you and I hope someone will reply:confused:

mariaf
05-07-2009, 09:21 AM
Scolimomof1,

I'm sorry to hear about your daughter's situation. I don't have any personal experience with growing rods with my own child, but I do know some children who have them.

What sort of growing rod is being suggested? In addition to the traditional growing rods, there are other (and some would say, preferable, options). The VEPTR works similarly to a growing rod in that it allows the child's spine to continue to grow. However, from what I understand the VEPTR is not nearly as likely to cause spontaneous fusion as a traditional growing rod. This is due to how and where it is attached I believe. Carmell, who sometimes posts here, is a good expert on this - hopefully she will see your post.

There is also a hybrid growing rod (used in at least one hospital the I know of, maybe more) that is VERY similar to the VEPTR.

You did not say what your daughter's curve is but I'm assuming it is too large for bracing or VBS?

Anyway, best of luck to you. I'll go shoot Carmell an e-mail also to let her know we can use her insight here.

S4Sarah
05-18-2009, 05:38 PM
I don't have growing rods but I have read about them. She'll need to have a surgery like every 6 months or so to have them extended. But on the plus side there is no risk of taking a chance of the curve worsening with a brace.

Scolimomof1
05-19-2009, 07:44 PM
Hello Mariaf,
Thank you for responding to my post. My daughters curve is about 56 or 58 degrees. I believe that we are talking about the veptr type, due to the conversation with our doc. he says that every 6 months he will go in and extend the rods so that she can continue to grow. We have an appt with him June 15th and at that point we will be setting up the surgery date. :(
Em has been wearing a TLSO 18-20 hours a day for 2 years now and has had enough of it. She is 8 years old so there is still a lot of time for her to grow and apparently when she reaches puberty then there will be a final fusing of her spine. I guess I will find out more on the 15th but as I said I can not find any one this young with the rods in. Thanks for your info and I hope to hear from the other person you were talking about....:confused:

mariaf
05-19-2009, 07:49 PM
Hi,

I just sent an e-mail to Carmell - hopefully she'll pop in soon :)

laurieg6
05-19-2009, 10:12 PM
I am in the congenital scoliosis yahoo group and there are many parents with young kids, like yours, who have veptr rods. Especially if your daughter's scoliosis is congenital, you might like that group.

Here is a link: CongenitalScoliosisSupport@yahoogroups.com

Carmell posts there and may be the facilitator, I just don't remember that point.

My son did not need surgery at age eight - that is when we first started bracing him. By age 11, his scoliosis had worsened and the brace became ineffective. He had surgery a few mos. after he turned 12. He, too, was so glad to be out of the brace. The surgery ended up being a great thing for him, although his posture is still a work in progress.

Good luck with everything.