If you’re like me, and you were born with both spina bifida and hydrocephalus, then you know the feeling. It’s that nagging voice inside your head that tells you “something’s wrong” but you want to make it go away. You refuse to listen to it. We ignore the headaches because we think “maybe I didn’t have enough coffee this morning.” We ignore the temporary dizziness and vertigo and attribute it to “not getting enough sleep lately.” And then, when the more serious symptoms come, nausea, decrease in appetite, irritability and becoming lethargic, we might even claim it’s due to a stomach virus.
But deep down, we know it’s not. These are all classic symptoms of a shunt malfunction, and, unfortunately, it’s not all in your head.
I haven’t blogged too much about hydrocephalus and shunts because, frankly, I haven’t had any noticeable problems with my shunt since I was a senior in high school. (Thank God!) But it doesn’t mean I take this “remission” entirely for granted. No. Indeed, I’m very aware that at any moment, my shunt could fail, or develop an infection, or do something that it’s just not supposed to do.
My parents were always very proactive about treating my hydrocephalus properly when I was an infant. I lived in Puerto Rico for the first three years of my life, and I was blessed to have one of the best neurosurgeons on the island. Even to the point of being brutally blunt, he always gave my parents the best advice on how to take care of me.
As a result of my parents’ wisdom and vigilance, I grew up being very aware of my shunt and that it could cause problems in any given situation. I also learned to not freak out whenever my shunt hurt, especially when the weather changed or if I was flying in an airplane. Changes in the weather or in air pressure have just become expected catalysts for shunt discomfort.
But in late October – Early November of my senior year of high school, that cavalier attitude toward my shunt led to my ignoring the very obvious signs my shunt was sending me. Here’s my story:
It was Halloween 2004, and the weather had begun turning chilly in Orlando. Always a kid at heart, I still insisted on going trick-or-treating around our neighborhood. I had a great time, and collected an awesome loot which I attacked when I got home, but I was a little annoyed that my sinuses were acting up. I had a massive headache, and even my parents attributed it to the weather and my sinuses reacting to it.
After Halloween, I began getting these headaches on a daily basis, sporadically. I never knew when they were coming, but often they went away as quickly as they came. Once my headache was gone, I felt 100 percent better.
About two weeks into November, I had just finished a test in my anatomy class (which I totally bombed, I might add, but I can’t really blame the shunt) when I once again got a massive, pounding headache. I managed to make my way to second period acting and joined my classmates who were sitting on the stage.
Suddenly, I realized my vision had blurred! It was really freaky. I have myopia and I always use glasses (it’s hereditary, but it’s also a secondary condition of the hydrocephalus!), and when I wear my glasses I can see just fine. I remember glancing at a nearby book and being able to see the letters of the title, but not really being able to read them without straining my eyes. It was by far the most bizarre biological experience I’ve ever had.
I also noticed that, while I could totally recognize each one of my classmates (we’d been in classes together for three years), I couldn’t make out their facial features.
That was it for me. I knew something was wrong, and it wasn’t my damn sinuses (pardon me)! After class, I did what any idiot teenager would do– I went to the bathroom to call my mom on my cell instead of asking someone to accompany me to the clinic.
Thankfully, I was safe and didn’t pass out or anything. Mami immediately picked me up and took me to the E.R., where I was submitted to the same old series of tests– cat scans, MRI, X-rays.
My shunt is implanted in the left side of my skull and at the time, the tube drained into my lower-left abdominal cavity. My shunt cable was coiled up in a pool of cerebrospinal fluid! It was not working. Thankfully, they were able to do a shunt revision without opening my skull, only my abdomen. I had the surgery just a few days before my 18th birthday, and (stubborn mule that I am), I celebrated my birthday with my friends at home, dancing to hits of the 60′s and 70′s– and only slightly doubled over in pain.
I honestly don’t know what the lesson is here, if there is one. Trust the voice inside your head, maybe. Don’t go Trick-or-Treating in cold weather. Oh, and always notify someone when you think you’re having a shunt problem, and ask them to help you to the nurse’s office!
But the real lesson here is that you need to be your own advocate. No one is going to fight for your health more effectively than you, and it’s a battle you deserve to win.
To the parents of kids with hydrocephalus, never be afraid to take a false alarm seriously! You are not inconveniencing anyone with a trip to the hospital, but you are risking your child’s life if you don’t go.
In honor of National Hydrocephalus Awareness Month, here are some great blog posts from people sharing their own shunt stories and advocacy efforts:
On Twitter? Join our #hydrocephalus TweetChat! by Tina D.
Chance’s battles with his shunt by Amanda K.
The Struggles Make You Stronger by Jennifer B.
Gabriel’s Story by Leilani S.
Kadyn, a Miracle in the Making
Rowan’s STORY by Andrea J.B.
Also, here’s an awesome video with a song sung by Rob Lundsgaard whose nephew has hydrocephalus. As a big fan of The Beatles, yes, I’ll admit this guy took a huge risk (LOL!) but the message is still poignant. A few of my friends, Kadyn and Jenn are in the video!
Imagine No Hydrocephalus
For some great resources on hydrocephalus, please visit the Hydrocephalus Association Web site.
And don’t forget to follow the #hydrocephalus hashtag if you’re on Twitter!
I just figured out the true moral of my story– what was I THINKING taking anatomy in high school!? It’s not like I planned on being a brain surgeon…