Just a couple questions for you--why did the neurologist want to check for chiari--as in, why does he suspect there might be one?
Hi Blackcat, I don't know much about it but chiari malformation can lead to muscle weakness, hypotonia, problems with balance and coordination. Doc says if he has one it is mild or borderline because she doesn't see major symptoms of it but it's worth checking for when we are ready. This is not the first time I have heard this, though... and have had in the back of my mind that one day I will want him to get an MRI to check about it.
I remember reading about this but figured people would only have symptoms like that if the chiari is fairly severe. DS doesn't even have headaches. What's interesting about DS though is that he had normal motor skills up until he was around 1.5 and then we started noticing issues. Maybe I should find a chiari specialist and get it checked out again. The pediatric neurologist didn't even pick up on the chiari. She told me it was a normal MRI. Then when he fractured his skull about a year later the neurosurgeon looked at that past MRI and said it looked like a chiari. But he also told me that DS would have to "learn to live with" his eyes being completely misaligned. Hello? There is strabismus surgery? I was really upset, thinking DS would have crossed eyes for the rest of his life. It turned out that we didn't even need surgery, the cranial nerve healed itself. He just didn't seem to have the knowledge I would expect. I'm so tired of going to docs who don't seem to know what they're doing. It's esp. troublesome when you're talking about possible brain surgery, which is done for some chiari cases.
BTW, DS is the same way in that his balance is a lot better than his coordination. His balance is probably like the 80th percentile and coordination maybe the 25th or 30th (mind you, this is after a year of physical therapy), bringing him up to 52nd percentile overall. His private PT was just telling me today that she is exiting him, and also that his balance is very good compared to other motor skills.
