Life with Chiari Malfunction

I went in to the Doctor’s office to figure out a bump that had developed on my head, and I walked out with a “Unicorn Horn” and a brain-stem disorder. It’s not something I picked up while I was there, like when the nasty lady sick from the plague sneezes on you in the waiting room; I always had this brain problem, and I had no clue.
Since I was a small child I have been suffering from migraines. I can remember being in elementary school and spending the day in a darkened nurses room with an ice pack for my forehead and a bag to puke in. It was miserable and as a child, it was confusing.

According to the American Migraine Foundation, they are described as an “inherited neurological disorder that is characterized by over excitability of specific areas of the brain”. Commonly these migraines are brought on by triggers and to each person the triggers are unique. Mine are scents, musk perfumes, specifically white musky scents, (Maybe because one winter when I was 13 a bottle of white musk perfume was spilled on the passenger floor in my mom’s truck onto the carpet and every time the heater kicked on the smell was so strong it made me so sick I would vomit), cigarette smoke, barometric pressure changes during storms and weird weather, and not drinking enough water. Once I get one of these “headaches”, I am usually miserable for 1 -3 days at a time. Many migraine sufferers get cluster headaches, like myself, where they come and go for long periods of time and are extremely painful.
It was for these headaches that I was at the doctor’s office and I asked about getting some tests done. I mentioned to her that I had developed a hard bump on my skull in the left frontal area. The doctor agreed that I should get testing and we scheduled an MRI. I was pregnant with my daughter, Belle, so we couldn’t get the dye with the scan. We got a baseline measurement on the bump and it stuck out about 3.5 mm.

A few months ago, just before Belle turned 1, I asked for a follow up MRI because my headaches were coming back, and the bump was feeling bigger to me. When I asked the doctor about ordering the new test, she briefly mentioned seeing Chiari in the first scan. I was pretty upset because that had been over a year ago and I know how bad Chiari patients can feel and what it does.

“What are Chiari malformations? Chiari malformations are structural defects in the base of the skull and cerebellum, the part of the brain that controls balance. Normally the cerebellum and parts of the brain stem sit above an opening in the skull that allows the spinal cord to pass through it (called the foramen magnum). When part of the cerebellum extends below the foramen magnum and into the upper spinal canal, it is called a Chiari malformation (CM). Chiari malformations may develop when part of the skull is smaller than normal or misshapen, which forces the cerebellum to be pushed down into the foramen magnum and spinal canal. This causes pressure on the cerebellum and brain stem that may affect functions controlled by these areas and block the flow of cerebrospinal fluid (CSF)—the clear liquid that surrounds and cushions the brain and spinal cord. The CSF also circulates nutrients and chemicals filtered from the blood and removes waste products from the brain.”

Chiari can cause terrible migraines, dizziness, blind spots in your vision, nerve problems, paralysis, and so many more problems for the sufferer. It is a mostly unknown field to most people, but I happen to know two people who also have it and both had the surgery that “fixes” some of the side effects. Both people I know that went through with the surgery hated the results. So naturally when the doctor told me I have it, I panicked.

The new MRI results showed the Chiari unchanged and the bump on my head had doubled in size. Now I was not the only one worrying, my doctors were too. Crap.

Over the last few months I have been tested and poked, stunned and completely broken. I have gone back and forth with doctors, eye specialists, nerve specialists and all over the state to different test facilities. At first the doctors thought maybe the bump was a brain tumor, a hemorrhage, or a bony growth from a hard impact to my head. It ended up being none of those things and I am left still without answers. What I know so far is that my CSF (cerebral spinal fluid) is not being pinched off enough for surgery, and that something is affecting the peripheral vision in the top of my eyes. That is all they can tell me yet. I am getting retested in a few months so that hopefully I can get answers to all my questions. Even if I am destined to have migraines my whole life, I would at least like to know why.

If you have any experience with Chiari or similar issues, please let me know in the comments. I would love to connect with people who have been through this.