Friday, February 17, 2012

Chiari Malformation

We visited the neurosurgeon yesterday in hopes of some answers regarding Ashlyn's brain malformation. I told my husband that we should dress nicely because we were meeting a genius. :)

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...


Amanda said...

Just spent some time googling "Chiari Malformation". I'm sorry this is now a part of your regular vocabulary. Please keep us posted and know that you are prayed for regularly.

Shalunya said...

Hi! We are starting a Chiari Blog Carnival (a community of bloggers that post about a specific topic relating to chiari and publish the post on the same day). There is a main article written about the carnival that includes links to all the blogs participating in the carnival. We would love to have you join us for the blog carnival. For further information visit my blog at or email me at if you decide to participate. We would love to have your perspective as well.
Shalunya (Renee Gallop)

Unknown said...

I too have Chiari Malformation that was 10mm down to my C2. I found out when I was 14 and waited until I was 23 to have the surgery. I recommend NOT waiting that long as now the recovery is worse than it would have been if I was younger. My surgery/recovery has been a long process that even still after 8 months, I am tremendous pain and am looking at a second surgery. My Doctor's name is Richard Ellenbogen from Harborview Medical in Seattle and he is a wonderful man and he sees children with our disease more than most surgeons who preform this surgery. He relates well to the younger crowd and is just an amazing man all around. He is definitely NOT like most doctors. I strongly suggest you give him a look into! I hope all goes well for your little girl and I wish you all the best!