Wednesday, August 30, 2006

Dandy Walker

I don't think I mentioned before that Avery's neurosurgeon thinks that the cause of her hydrocephalus is something called Dandy Walker Syndrome although I don't think that is known for sure yet. The more I read on it myself, the more I think that she probably doesn't have it. I don't know, from what I've read it sounds as though Dandy Walker is usually associated with other defects and malformations with the face, heart, spine, fingers, etc etc, and Avery doesn't seem to have anything else wrong with her. The only thing that may or not be associated with something like that would be her eye thing, if she does turn out to have Duanes syndrome or something. But other than that... And also, it sounds like Dandy walker usually causes an partial or complete absence of the cerebellar vermis, which is that area between the two hemispheres of the brain, and unless I'm mistaken because I'm not a brain expert, her MRIs made it look like there was nothing wrong there - I'm sure I saw a clear divide between, and I've checked a couple of times. Am I just clinging to foolish hopes? I don't think so, but maybe I am. See, it's just that the presence of Dandy Walker would be another thing that would decrease her chances of developing normally, but as I've said before, she seems to be so normal!!! She's pretty much on track with everything the books say she should be doing. And I do a lot of reading about that sort of thing.
That's actually been another thing that's bothered me with her neurosurgeon. When we've questioned the care she's getting, they say, "Well, it's not an exact science you see, and we're pretty much going on how you say she's doing, and if you say she's doing fine then that means we're doing our job", and sometimes when I think about that it really bothers me because here I am, totally inexperienced when it comes to babies, and while I am doing everything I can to learn everything I need to know, and am reading everything I can get my hands on, I am not the one with all the years of training.... they are. Shouldn't they be capable of keeping a better track of her progress and the reliability and effectiveness of her shunt? I just have a really hard time trusting that they're doing what's best for her. When her neurosurgeon doesn't even take the time to look at her chart before he walks in the room to check whether she's a boy or a girl, that bothers me. And when we're constantly being asked, "Now, what was her shunt set at...?" because they don't know, that bothers me. And when, after being told that an MRI is very likely to change the setting in her kind of shunt, they try to cancel our follow up appointment after her MRI, that really bothers me. It was only because we had the hospital call the doctor's office and say "shouldn't she be coming in to have her shunt checked after her MRI" that they said, "Oh, well, okay, I guess she can come on in after she's done" that they actually saw her. And her setting had changed. At least, they think it had, he said "Well, I can't remember what it was set at before, but lets see how she does with it at this setting."
Do you see why I have so little confidence in Avery's neurosurgeon? This is why we took her to UVa for a second opinion. The doctor up at UVa was much nicer, and much more helpful and responsive to our questions and concerns. He said that with regards to what's actually been done for Avery, from what he can see he probably would have been doing the same things, so that made us feel a little better. But I think we'll take her up there again once she's had her second MRI in a couple of months to see if he's still in agreement with her current doctor.


overseas grandma said...

I had been signed up to the DW yahoo group but have 'unsubscribed' (horrid made-up word) because it all seems to irrelevant to Avery. As you say, Josephine, she seems so entirely 'normal' whatever that may be. I am so sorry you have felt so much in the dark, second opinions are always worth having and perhaps a complete change of neurosurgeon might be an idea. In your search for a new one you could mention these anxieties about the current one and let them know that you find this unnacceptable. (Ps I know I'm catching up terribly late and this might all seem irrelevant now.)

Anonymous said...

Hi. My name is Debra and I have a nephew that will be 2 in april. He was diagnosed with dandy-walker syndrome before he was born and since then he has had to have a shunt and had it corrected twice. he can't sit up, talk, move his arms and legs like other children and he has a hard time eating. I just think he is such a wonderful blessing from God and we wouldn't change him for nothing in this world.

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