Going into the appointment, I was prepared for the doctor to say "no surgery," "surgery," or "let's wait and see." I was a nervous wreck and I had butterflies in my stomach all day. Ashlyn looked adorable dressed in pink with her little pigtails and she quickly melted the hearts of other patients and nurses that saw her toddling around.
The surgeon told us that Ashlyn's brain reaches down to her first vertebrae (in other words, it is NOT supposed to be like that). She has a Chiari One Malformation and it is 10mm. He told us the risks of Ashlyn having surgery and the risks of Ashlyn NOT having surgery.
The doctor was very nice BUT he treats more adult patients than children. He only sees Chiari Malformation in children 5-6 times a year and does 1-2 surgeries for those children. (Which we didn't think was a very high rate). The doctor referred us to a pediatric neurosurgeon at Duke who knows more about Chiari and sees it more often. We are hoping to have more of our questions answered there.
Now we get to wait some more...
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