Hello,
I haven't been on here in 15 months but here is an update on my now 7 year old. Jake ended up having a decompression with C1 and partial C2 laminectomy and O-C2 fusion last August 2013 when he was 6 yrs old with Drs Rekate and Insinga. He was discharged to go home after 5 days.
He did amazingly well, with no complications and absolutely no pain after about 10 days or so. (only OTC meds after a week). He wore a hard neck collar for the first week and then a soft neck collar for about 2 weeks after that, and then nothing. He initially lost about 70% of the mobility in his neck but had PT 2-3 times a week for about 3 months and almost immediately resumed swimming lessons (3 times a week) about 6 weeks post op and I'd say he had almost full neck mobility by about 6 months post op.
The only limitation that he has is a little loss of rotation of his neck but only his doctors and I notice. No one has any idea he even had surgery at this point if I didn't tell them. His central sleep apnea disappeared immediately when he woke up from surgery as well and his basilar invagination is 100% corrected.....now looks completely normal and Dr. Rekate said he was the worst case he'd ever seen in a child (95 degree angle before surgery and should have been around 145 degrees).
The only part in all of this I'm not thrilled about is that the Drs decided not to do the duraplasty with tonsillectomy during the surgery (due to the risks involved in performing it on a young child), so now a year later, his herniated tonsils are STILL down to almost his C3 vertebrae. The Drs thought that just removing the bone from the decompression and laminectomy would have allowed enough room for the cerebellum to shrink up on its own and it really has not budged even a bit.
He will likely need a 2nd surgery in the future to correct this and it will be harder now that there is scar tissue, plus screws and rods in the way. Since he has never had any type of Chiari pain symptoms before or after the surgery, I'm taking my time on deciding whether to move forward with the 2nd surgery this year or waiting longer. His only issue is that his motor skills are in the lowest 1st percentile for his age, as well as some minor speech delays, and the Chiari may or may not be causing these delays. His Drs said there is really no way to know for sure if the Duraplasty will automatically improve his motor issues or not, so doing the surgery is sort of a 50/50 shot at improvement. He can function as a "normal kid" as far as walking and running around, but pretty much all sports, riding a bike, tying shoes, anything requiring coordination or hand dexterity are out of the question. i.e. Handwriting should be at 2nd grade level but looks like Pre-K to Kindergarten level, etc...
Has anyone just had a Duraplasty/Tonsilectomy surgery only and if so, what was the recovery like? Would you bother going through with it if the only issue going on were motor delays?