It isn’t brain surgery.
That is one phrase I’ve used before to describe the simple nature of activities. However, the sentence is an accurate description of this season of my life. This season truly, genuinely isn’t brain surgery. This season is full of waiting, pursuing, pushing for hope and change. Reliance on medication and doctors who know far more than my (large) brain can fathom or imagine.
But before we get to this season, allow me to back up five months to April of this year. April 18, 2016. Monday. It was supposed to be a normal Monday. Mundane, uneventful, full of grace, laughter, and the ordinary. Instead, I woke up that morning, ran out the door for class, and had a minor car wreck. Neither car was damaged, but I hit my head on my steering wheel.
So instead of a list of classes, staff meetings, more class, and a mundane Monday, I found myself sitting in the Emergency Room of a local hospital with my parents. We were called back rather quickly, I was sent for a CT Scan, and we received surprising results. I didn’t have a concussion, but I needed further testing because they found a possible malformation.
Now, I’ve joked for quite a while that something was wrong with my brain, but I never expected it to be true. We scheduled the MRI for the day before my college finals started. The MRI took forever and I was hoping it would all just be a simple blemish on the CT film. That afternoon they called with the results. The scan revealed that I did, in fact, have a Chiari Type I Malformation.
Now, for those that don’t know what a Chiari Malformation is. . . allow me to explain. A Type 1 Chiari Malformation involves in the cerebellum. The cerebellum sits at the back of the brain. It controls movement, balance, all muscle functions. When a person has Chiari it basically means: Big Brain. Small skull. The brain is too large for the skull it lives in so the cerebellum is pushed downward and the cerebellar tonsils descend down into the space with the brain stem.
We were then sent on a long journey the last five months where we went from doctor to doctor trying to figure out what this means. A quick google search and you will find a whole community of people with stories very similar to mine. People who have lived with headaches and other symptoms for quite a while, but no one ever figuring it out. You will also find various approaches to treat Chiari. Yes, there are a few surgeries that could be done. There is also an option to pursue medication to manage symptoms.
Let me stop for a moment and answer some common questions:
Will it kill me? No. People with Chiari Type I go on to live very full and complete lives. They deal with symptoms that may progressively become worse and sometimes they live with very minor symptoms for their whole life.
Can you feel the tonsils when you touch your neck? Y’all, I’m not kidding when I say I’ve been asked this more than once. No. The tonsils are still covered by strong muscles of the neck and the lining of the brain in addition to the top vertebrae of my spine.
You said your tonsils. . . Yeah. Let me cut you off right there. Not the same tonsils as you have in your throat. Different tonsils.
How are you just now finding out about this? Well, I’ve dealt with headaches (a common symptom) since my early teens, but that paled in comparison with the other symptoms I was dealing with. I’ll remind you I was misdiagnosed with Crohn’s Disease for 5 years and Hashimotos Thyroiditis for a year. We’ve been working to figure this out for over 10 years. No one attributed it all to the brain.
Should you desire to spend more time reading about this, here is a link that explains things.
At first we decided that we would do surgery. The neurosurgeon would open up the lining of my brain and sew in a patch made from a cow’s (yes, a heifer.) heart sack into the lining of my brain. (Sounds pretty rad, right?) I set up my life and started preparing to have surgery in August or early September. However, after having my case reviewed by 10 different doctors we have come to a place where we agree that I do not need surgery. I have not experienced any serious neurological deficits that would require surgery to remove the pressure. Instead, we are using medication to treat the symptoms I have. The hope is that I will never need to have surgery, but we cannot predict the future. For here and now, I take medicine and I continue to do the normal things in my life. So there will be no heifer in my head. Well, not a new heifer at least. Which leads me back to my opening phrase, “it isn’t brain surgery.” Because, well, it isn’t. It could have been and it may be some day, but for now it isn’t brain surgery. The numerous doctor’s appointments come to a stop. The chaos of the whole experience calms. We resume what feels like “normal” life except we have this new piece of information. This new knowledge about my brain.
September is Chiari Awareness Month. It is exciting to know that there is a community of people hoping to put this out there. Now if you do enough research you will probably find a crazy story or two of someone who had the surgery and something terrible happened. People who are crippled by this malformation. Don’t let that scare you. Why? Because the people who continue to function and live a good life don’t spend their time writing their story. To know that there are “normal” people who have Chiari. People who get up and go to work every day. People who rock their big brain status and make the best of the situation they’ve been given. That is the life we live.
If you are a friend of mine then thank you for always keeping up with this journey, and for walking through the last few months with my family. If you are a fellow Big Brain friend then welcome to my story, and I hope you will take the time to share yours.