A Chiari Story, a God Story

Over two years ago we found out that our oldest daughter has Type 1 Chiari Malformation. It’s a neurological disorder where the bottom part of the brain, the cerebellum, descends out of the skull and crowds the spinal cord, putting pressure on both the brain and spine and causing many symptoms. 

joejanechiari

We found out that Eliana has a Chiari after having a CT scan and then an MRI because she was having horrible vertigo spells and headaches. She was 5 years old then and vertigo spells were so bad that she would jump into our arms and hang on for dear life until the room stopped spinning.  There were some times she would get sick. Afterwards she would be completely wiped out and just want to go to sleep. This happened once or twice a month for several months. 

We saw a Riley Hospital neurologist and a neurosurgeon. Eventually the spells stopped and she has had 6 month checkups with her neurologist and her neurosurgeon. The neurosurgeon suggested that because symptoms were not severe and would not require surgery. Eventually the spells went away and she was having 6-month check ups with a neurologist and a neurosurgeon.

She did have some vision symptoms like seeing spots and saying things looked blurry so we say a pediatric eye doctor and found out she needed glasses, but after very through eye exams her vision issues seemed unrelated to her Chiari. 

In March,  more than two years since her last vertigo spell, Eliana started complaining that she was getting dizzy again. Every night after she lies down for bed, she complains that her head hurts and that she feels like the room is moving and/or spinning. 

After I called both doctors to report her new symptoms they ordered another brain MRI. The length of the herniation of her Chiari is less than it was 2 years ago from 9mm to 4mm, but the MRI showed that there is decreased spinal fluid flow.   

There are normally two options for treating Chiari. The first option is brain surgery and the second option is to treat symptoms. Next week we have appointments at Riley with both Eliana’s neurologist (on Tuesday) and her neurosurgeon (on Friday) to discuss her symptoms and her latest MRI and find out what our next steps will be. 

We don’t know what the doctors will suggest, but we know that God is with us.  Through all of this we are trusting in Him. Eliana’s name means, “God has answered my prayer.” Not that He will answer some time or we’re waiting on him to answer, but He has already answered.  We are sharing all this to ask you to pray with us. I will keep you posted! 

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1 Comment

Filed under Faith, Parenting

One response to “A Chiari Story, a God Story

  1. Sarah

    I read your post last week (my aunt Marcia sent it to me) and just sat down and started thinking about it. I think your follow up appointment is today and I know how unnerving those appointments can be. Just so you know, you have someone in Michigan praying for you today. And if you ever want to connect I’d be happy to share our journey with you. My 5 year old had brain surgery to correct her chiari 6 months ago. Her recovery was swift and I can tell you that being on this side of surgery it all seems like a distant memory. She is doing great! Praise God. I’m praying for great answers for you today!

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