How I'm Raising Awareness for Chiari Malformation This September

September is Chiari Malformation Awareness Month, as well as Chronic Pain Awareness Month. I experience chronic pain due to both my Chiari malformation and my Ehlers-Danlos syndrome (which has its own awareness month in May). I will be writing a separate post for Chronic Pain Awareness Month on my own experience and relationship with chronic pain, but this post is specifically on my experience and journey with Chiari malformation. I have mentioned I have the condition regularly in my blog, but I have not really talked in depth about it or about how completely it affects my life.

Arnold-Chiari malformation, or simply Chiari malformation, is a condition where brain tissue from the cerebellum extends too far into the spinal canal. Usually, as in my case, it is a birth defect, but it is often not discovered until later in life, on an MRI. It is often asymptomatic, but can just as often cause very extreme symptoms, as it does in my case. Symptoms include headaches, neck pain, coordination issues, dizziness, vision, voice and throat problems and various complications that can arise, including fainting and blacking out – which is how I first discovered I had Chiari in eighth grade.

It has taken a while for me to come up with a teachable metaphor to explain Chiari malformation to young people. I believe it’s important to be honest about my medical conditions both with my daughter and those I teach. I have found it to be such a great character building tool, both in promoting empathy and teaching them they’re not alone, since so many kids have health conditions like asthma, allergies and disabilities, and it’s really inspiring for them to see a teacher who has conditions too but still plays with them and teaches them.

I explain my other condition, Ehlers-Danlos syndrome, as my body being like a chair held together with bubble gum instead of glue. Chiari is like hard boiling two eggs, shown in the picture I drew above. A non-Chiari brain is the regular egg. A Chiari brain is the overboiled egg, that has some extra egg hanging out of the shell. In a body, it hangs into one’s upper spinal column.

My Chiari story is a strange one because it is a story of being diagnosed, forgetting I was ever diagnosed and rediscovering the diagnosis years later. I had migraines from an early age – really, as long as I can remember, I have had severe headaches on and off, to the point I would vomit they were so bad. And I had a bit of blacking out upon standing as well, but I’ve always been quite tall for my age, and my mom had it too, so we figured it was just a blood pressure thing in me like it was in her, nothing to really be concerned about. I was regularly seeing doctors all through this time, who agreed.

 

But then, in eighth grade, I switched from playing the trombone in band to playing the tuba, and for this tiny girl to start playing a huge instrument was the trigger I needed for my birth defect to really rear its head and start being seriously symptomatic. When I fainted during a tech rehearsal for a musical I was on props crew for while lifting something – Chiari is often made worse by bending down and lifting – I got an MRI in the ER, and they discovered my malformation.

Chiari malformation is a lifelong, incurable condition. It is also not dependent on the size of the herniation, or amount the cerebellum is extended into the spinal column: one can have a large herniation and not be symptomatic, or a smaller herniation and be extremely symptomatic. Surgery can be extremely helpful for some people, and for the most part carries few risks, but is not a cure. Many develop new symptoms, or need repeat surgeries. Because of this, despite meeting with a renowned pediatric neurosurgeon and Chiari expert in another state, my parents decided to not go through with the surgery, and together with my medical team and symptom management hoped I would outgrow my symptoms.

And, seemingly miraculously enough, it seemed like I did grow out of the symptoms. I stopped seeing neurologists and neurosurgeons and my doctors in MI completely. I moved several times and never got my full medical records transferred. And I completely forgot about my eighth grade Chiari history until I started having terrible migraines shortly after the birth of my daughter.

Since the symptoms were so different, my mom, who remembered my Chiari, unlike me, didn’t connect the dots and remind me of my diagnosis. Over a year after the migraines, and later horrible, all-over chronic pain and many other symptoms, I was misdiagnosed, in July of 2016, with fibromyalgia.

The dots were finally connected in December of 2016, when I was 25 years old – over a decade after I was originally diagnosed. Now, at 26 and still extremely symptomatic, and having reached the limit on what we can control with other symptom reduction methods such as medication, surgery seems our only potential option, and I am leaning towards it, consulting experts and making plans. But it’s still not an easy decision, as a mother, an educator, someone who knows it’s not an easy fix. I want to live my best possible life to live out my call – for my family, for all my kids, biological and those I teach. Will surgery help with that? It’s something I think about, and pray about, over and over again.

Until then, I believe it’s so important to raise awareness about Chiari. It may not be well known or extremely talked about, but it is more common than you think, and what the Chiarians in your life could use is awareness and support. Each day with this illness is a battle, but I am convinced that if I work hard enough, I can find the teachable moments in it, both for myself and for those for whom my life will hopefully inspire: especially the next generation I teach.

This post originally appeared on Writer Kat.

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