Mystery Illness – September 17, 2020

Last August, I was diagnosed with Chiari Malformation, that means that my brain dropped in the back herniated into my spinal canal and it is causing many neurological problems.

We now know the full picture of what is happening in my brain. Cerebral spinal fluid is supposed to flow freely all around your brain and into your spinal canal. My CSF flow is completely blocked on the right side. My skull is also a little too small for my brain, so my skull is squishing my brain and my brain stem is very compressed.

This is adapted from one of my mom’s Facebook posts from Fall 2020:

I am being referred to a neurosurgeon in Seattle, who specializes in Chiari Malformation, to come up with a treatment plan. My doctor here thinks I will need a decompression surgery, unless they can find another cause for my symptoms. That means they will do brain surgery to remove a portion of my skull, in the back of my head, to make more room for the extra brain tissue. The neurosurgeon I saw on Monday is concerned that I may also have a carotid artery dissection that is leaking and may be causing my stroke like symptoms.

He ordered MRI/MRAs of my neck and brain. I am still waiting to schedule for those. Right now, my five week, high level migraine and vomiting has passed. My neck and the back of my head are stiff and sore with pressure and my face and neck are numb. My doctor said that won’t go away until the potential surgery. I feel a deep tiredness and it is often hard to put my thoughts together. I am home from school, resting a lot and trying to process all of this.

Thank you all so much for your love and prayers!

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