#34. Chiari Malformation Story

Getting diagnosed with Chiari Malformation usually comes with a story. This is mine…

Back in the summer of 2020 I started experiencing a lot of vague dizziness and headaches that were hard for me to describe. After a few annoying weeks of this I decided to schedule an appointment with my primary doctor. She wasn’t too alarmed by my symptoms and told me I was most likely experiencing a common type of vertigo associated with an inner ear issue. But, because I was also experiencing headaches, she referred me to a neurologist. 

This referral would end up being the first of many because again, for an adult to be diagnosed with Chiari Malformation, evidently there needs to be a story. 

Over the next 18 months, I ended up seeing a total of 11 different doctors and healthcare professionals who all took their best educated guess at identifying the underlying cause of my problems. I was met with a lot of genuine concern and a lot of,

“I’m sorry ma’am, but I’m not sure what’s going on with you either.”

Finally, the Nurse Practitioner I was seeing at my Neurology office decided to repeat a Brain MRI. Even though the first one I had done a year prior did not show anything alarming, she thought perhaps it was worth repeating since my symptoms were getting worse, not better.

This MRI is what finally suggested that I might actually be dealing with something called a Chiari Malformation. The report had stated that my cerebellar tonsils (the lower part of my brain) had “further progressed downward” since my previous exam and were now considered to be outside the limits of “normal”. 

This is when the Neurology NP told me I needed to be referred to a Neurosurgeon, preferably one somewhere big, like The Cleveland Clinic, who would be quite familiar with Chiari Malformation.

So, in January of this year I had an appointment with the nice folks in the Neurosurgery department at The Cleveland Clinic. The Physician Assistant I saw was wonderful. And you know what one of the first things she asked me was? 

“So, Christine, what’s your story?”

(See, she knew. She knew that by the time patients like me get to her office there’s often a long and detailed story.)

She patiently went through my story with me and ordered a few more tests to confirm what she was suspecting, while ruling out a couple other really scary sounding things.

The final test I had done was a special MRI of my cervical spine.

THIS. This is what confirmed everything.

This confirmed that my cerebellar tonsils are indeed descending downward below the base of my skull and putting pressure on my spinal cord. AND as if that weren’t exciting enough, they are also dampening the flow of my cerebral spinal fluid in two places in my brain. Neat.

Now I finally had a diagnosis that made sense though. This is what has been causing my headaches, dizziness, ringing in my ears and balance issues, among other things.

Part of my brain is literally too big for my skull. 

Huh, must be the part where I keep all my opinions, she mused quietly to herself.

Anyway, let’s move on to the rather anti-climactic part of this story.

There’s actually not much that can be done to fix it.

No medicine, no treatment and certainly no “quick fix” interventions. There is a major (like, MAJOR) brain surgery that could be done, but the neurosurgeon saves that as a last resort type of thing in the event that my symptoms progress into paralysis and things like that. For now, it’s just symptom management and close observation.

And that’s where the bookmark goes for now in this story.

After 11 different doctors, 15 different medical tests and more blood work than I can count and I finally have an accurate diagnosis. 

Not “just vertigo”. Not “just migraines”. 

Chiari Malformation. 

I didn’t even know that was a thing.

So, while I ponder how best to navigate my life with these physical symptoms, I also can’t help but ponder how God tucked this little story into the bigger story of my life and how I guess I’ll have to keep turning the pages to see how it all ties into the even BIGGER story He’s telling. Until then…

Steady as she goes.