View Full Version : Advice on expandable rod surgery for six year old

Will's Mom
01-05-2008, 02:02 PM
My son Will had a Chiari Decompression in December 05. His curves have progressed 10 degrees since the surgery and his doctor is now recommending expandable rod surgery with expansion surgeries every six months followed by a spinal fusion at 12 y.o. or so. He has other health issues ... Coates Disease (blind in left eye), occasional malignant reactions to anesthesia and born with a self correcting VSD. His curves are 55/43.

We're trying to connect with other parents who have gone through this to find out about recovery, activity post-surgery and any other information. His doctor has just ordered a Providence brace that we'll get in a couple of weeks but the docs are not optimistic that the brace will arrest the curves (they could only attain 50% correction).

It would also be great to hear from parents whose kids have scoliosis secondary to Chiari to find out what your experience has been.

Many thanks.

01-05-2008, 03:07 PM
I'm sorry I can't offer you any advice, but I just wanted to say that I hope everything works out for the best for your son, yourself, and the rest of your family.

I do remember reading an article in Reader's Digest a few months ago about a child who had undergone expandable rod surgery. Ah, I just looked, and they have it on their website. The URL is http://www.rd.com/content/birth-defects-cured-with-new-medical-technology/. I hope it's of use to you.

01-07-2008, 03:26 PM
Will's mom,

I just posted to you on another thread. Let me know if I can help at all.