Though congenital hydrocephalus is usually diagnosed in infants, my story is a good example of how it can go completely undiagnosed into adulthood. Check out how I remained a baffling medical mystery until the ripe age of 27!
I went through most of my childhood with medical problems diagnosed as a variety of different conditions. In third grade, when I suddenly started having terrible headaches, doctors diagnosed me with hereditary migraines due to hormonal fluctuations. And when I started having urinary problems later in elementary school, it was sloughed off as little more than excitement or typical childhood accidents.
Over the years, I accumulated more and more labels - everything from migraines and infections to incontinence and pelvic floor disfunction. In reality, there really was no end to the second opinions. For years, my faithful and tireless parents carted me from doctor to doctor as various treatments proved ineffective at dissipating symptoms.
As a result, I missed a lot of classes as a youngster. In fact, in high school my symptoms escalated to the point that my parents had to sign special papers to completely excuse me from school altogether! My senior year, I reregistered, but I barely made it to prom after yet another three month hiatus.
Missing school was hard for me as an A-type student, and I soon developed severe anxiety due to the daunting task of making up weeks worth of work at a time. But even that was doable compared to handling the teenage social situations that came about. I cannot count how many times I learned the truth in what my parents had always told me, "You know a true friend by how they handle differences. A true friend makes the effort to stay in your life no matter what!"
I lost many friends due to the complexity of my situation. Not that I can blame them. What teenager can possibly understand the intricate consequences of chronic illness? Because of my condition, I just didn't have the capacity to keep up with friends and I had so much going on that I stopped following what happened in their lives. Of course I cared, but my life got complicated so quickly that I completely isolated myself within the shell of what appeared as more pressing matters within my own life.
By college, my social life wasn't much better. I made new friends and had a few good ones from youth, but as I continued to have unexplainable medical problems the friend list grew shorter. After all, college kids are decent at keeping up with faces in front of them on a daily basis but not much for followthrough, and I was pretty prone to leaving school.
Whether it was another surgery or an exaggerated bout of mono, I probably spent more time away from school than I did in class. So, after trying for seven years, I finally decided a full college degree wasn't for me. Perhaps God had a different plan, since school obviously wasn't working out.
This brings me to September 2015, when I at last made the decision to quit school. Once again, my symptoms had escalated to the point that I was unable to attend class. In fact, it got so bad that I became primarily bedridden - not for the first time, requiring my wonderfully kind parents to pack up my apartment before driving me back to Houston to live with them.
It took months of doctors appointments and consultations to assess the new developments, but eventually my neurologist landed on a decision. Though we had heard the word hydrocephalus back when I was in high school, it was debunked at the time because it was determined then that I simply had the naturally large ventricles of a two-month premature baby. But this time, symptoms led doctors with fresh eyes to believe that maybe I really did have hydrocephalus afterall.
It was confusing honestly. Did I have hydrocephalus or not and why was it so difficult to say for sure? Wasn't there a test to prove it one way or the other?
Sure, there are lots of tests... I had spinal taps and imaging but everything came back questionable. My pressures were normal but there seemed to be nothing else that explained it all, so we ended up electing for an endoscopic third ventriculostomy (ETV) - an operation commonly used to treat mild hydrocephalus.
Well, I'm pleased to announce that for a good two years, I was cured! Or so we thought. But it was not until after symptoms once again returned, and I had a second brain surgery to insert a VP shunt, that we got a firm answer naming hydrocephalus as the sneaky culprit we had been fighting for so many years.
Therefore, after 27 years of being a medical mystery that baffled all, we finally got an affirmative answer to the endless questions: Based on all gathered evidence, I do indeed have hydrocephalus.