Originally Posted by frusteratedmom
On another note does anyone know of any link between Chiari Malformation and behavior problems?
Well, let me just tell you about our experience with Chiari and behavior.
My daughter has Spina Bifida and Hydrocephalus and then of course Chiari Malformation Type II. Well, 3 weeks before the end of the school year ( a year ago last May) she started acting out in school, which she never had before. She was yelling at her teachers and telling them how it was going to be, etc. They were in shock and didn't know what to do with her. Thank goodness it was the end of the school year.
At home she got super mean. I mean MEAN
She starting getting violent with me, DH and her PCA. It was crazy. I thought I was going to go insane. She always had whacky behavior due to her ADHD but she was never violent and just so mean.
I made an appointment with her neurosurgeon and he didn't have much to say. He said that her shunt could not cause this kind of behavior. Well, thank god this behavior started suddenly because that is the only reason I kept feeling like this wasn't just something new on our list of crap we had to accept and deal with. It was hard for me to believe that she could just wake up this way one day. There was nothing gradual about it.
OK, well after a whole summer of this crap and me thinking I was going to slit my wrists any second, the neurosurgeon finally decided to do more than a CT scan and we did a shunt flow study and an MRI. Thank god!
The shunt flow study showed that her shunt wasn't working properly at all. Surgery was done a couple weeks later.
After the surgery, when she had INSTANTLY returned to her former
non-violent self ,he told us that he believed that the chiari malformation was to blame for the behavior change. He said that a shunt malfunction cannot change your behavior in that way, but the chiari can, and we all know that a shunt that isn't working can make the Chiari become symptomatic.
So, there you have it.
Thank god we have not had to have the decompression surgery---I really can't imagine. I've seen the pictures and done the reading on it and I wouldn't wish that on anyone. Our next surgery could end up being a tethered cord surgery which is right up there, as far as the scary factor goes.
I'm sorry I can't answer your question about the surgeries but I do know from firing a couple neurosurgeons in my time that they are not all alike and have varying opinions---more so than you'd think.
Also, I know it is incredibly hard (at least for me) to find good info. on Chiari because of the different causes of Chiari and the different types. Most info. about surgery and the like all have been something that wouldn't pertain to my child. Maybe the decompression surgery is the same but the symptoms and cause, etc. varies a great deal.
I guess my only opinion for your situation is to get 2 other opinions. I live in St. Paul, MN and I have known people who have traveled to the childrens hospital in Chicago to get opinions when their kid has has the same dang shunt revision a million times, or some other neurosurg. surgery. I usually see that with a neurosurg. here who is very aggressive and cut happy and subscribes to some old ways of thinking.
Anyway, good luck. I feel for you---I really do.