Myriah’s Chiari Malformation Story

Hello. My name is Myriah. I was born with a Chiari Malformation, but I didn’t find out until recently.

I was told in high school that I had scoliosis and a reversed curve in my neck. Occasionally, I visited the chiropractor for it, but I didn’t see him actively until 2000 when I started having back pain, neck pain, muscle spasms and headaches.

In 2006, I gave birth to my son and became a mommy for the very first time. Sadly this is when the pain started getting worse. Headaches and spasms were becoming more frequent. My primary care doctor prescribed me with pain medication to cope.

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What is Chiari Malformation?

Chiari (key-ari) Malformation is a neurological disorder where the cerebellum descends out of the skull and crowds the spinal cord. The cerebellum creates pressure on the brain stem which affects the nerves throughout the body.

Chiari Malformation its a birth defect, and about one in every 1000 children are born with it. Currently the only treatment available is surgery. Infants and children diagnosed with Chiari undergo decompression surgery. This surgery involves removing a portion of the skull in the back of the head.

Many people with Chiari have symptoms that become intensified after an injury to the neck or back. This usually results in an incidental finding of a Chiari formation.

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In December 2008 I injured my back while shoveling ice and snow off the side walks at work. I spent the night in the ER, but my condition wasn’t discovered at this point. Over the years the pain escalated, and I was plagued with muscle spasms, black-outs, back and shoulder pain, headaches, band like tightening around my chest, gagging and choking on my saliva.

I visited several doctors who all exclaimed that nothing major was wrong with me. One doctor even explained that my pain was the result of being over-weight with large breasts (they were barely a B cup). Pain medication and muscle relaxants were always the solution.

In 2009 someone referred me to a muscular/skeletal specialist after reviewing my CT scans and X-rays. He informed me that my brain sat lower in my skull than normal. He believed I had something called Arnold Chiari Malformation. He requested an MRI scan of my brain. Right after the MRI I lost my health insurance and never heard from the doctor. I figured no one called me so things must have turned out fine.

At this point I had 3 children, and it was becoming more and more difficult for me to function. I turned to a clinic who recommended medical marijuana. It helped me cope with the pain and made it so I could function as a stay at home mom.

My husband and I found out we were expecting again in 2012. During my first appointment with my OB, she noticed that my file indicated I had a Chiari 1 Malformation diagnosed in 2009. There was very little information in the report, so she referred me to a neurologist. It finally felt like there was hope and maybe we could acquire some answers!

“The neurologist declared that I had a “borderline Chiari Malformation” but that I was not symptomatic.”

Shortly after the baby was born, the doctors took MRI’s of my brain, neck, and spine. The neurologist declared that I had a “borderline Chiari Malformation” but that I was not symptomatic. He referred me to a Rheumatologist to deal with the pain and prescribed more migraine medication. It felt like we were back to square one!

I knew this couldn’t be the end of it. There had to be a solution so I called a local Chiari specialist. They needed a referral from a doctor who was treating me. I sought out an appointment with my primary care doctor where he casually explained that since the neurologist diagnosed me with borderline Chiari Malformation, it meant I DIDN’T have Chiari Malformation.

What?! You have to be kidding me?

He mockingly stated “basically you have a Chiari Malformation, congratulations! You can tell people if you want, but it’s no big deal!”

I requested to speak with a specialist about it, and mentioned a neurosurgeon in Portland, OR that I would like to acquire a second opinion from. He instantly refused to refer me “to some surgeon who will just want to cut off the back of your skull.” He diagnosed me with Fibromyalgia. Furthermore, he insisted that Fibromyalgia is ONLY treated with stress management and exercise. Stress management and exercise? Really?

I cried pretty much the entire time my husband and I were there and I cried the whole way home! I called the specialists’ office to find out if there was anything else I could do to be seen without a referral, but there was nothing they could do. I was in tears again and left feeling hopeless.

I scoured the internet for names of surgeons who were familiar with my condition, and began calling them all. Finally, I found a neurosurgeon who would schedule me! I sent over all my scans and files then waited to hear back. About two weeks later I received the call I had waited so impatiently to receive. The doctor wanted to look at me! I scheduled the appointment, and was in his office a month later.

He was patient and calm. He reviewed my scans and did some routine tests. He explained that I do have a Chiari Malformation, but that the CSF flow didn’t seem obstructed. While surgery is on the horizon, there were a few other things that need to be considered. It is common for people with Chiari Malformation to have many other disorders, so pinpointing exactly which pains and issues are coming from Chiari and which are caused by another disorder is important. Ultimately he decided we should wait to do decompression surgery until all disorders are exposed.

It has been about a year since then, and just recently my symptoms have intensified. Some symptoms have gotten worse or increased in frequency, and some new symptoms have popped up along the way. Some days I cannot speak without difficulty. I know that surgery is in my future and while it scares me to think about, some days brain surgery actually sounds like a joyous option!

Learn more about Bread & With It’s Little Chiari Warriors