It's Minnesota. The green leaves on the trees are slowly turning yellow, orange, and red in response to the cooler nights of September. The animals have begun preparing for winter. Families are re-arranging their schedules to accommodate the kids going back to school. There are sports and after school classes to sign up for, and child care to plan for those times when parents can't get home from work right away. Kids are nervous or excited for starting a new school year.
It's time for me to brush up on the things I've forgotten.
I knew this day would come, the day that I can't remember the details of those challenging ten years that began in 2006. Life has been unpredictable and busy this summer, and I haven't had time to do what I've done every summer since 2010, talk to others who have been newly diagnosed with hydrocephalus. Bring them hope and encouragement as they face the prospect of brain surgery for the first time. Help them understand what hydrocephalus is and how to spell the dang word!
My diagnosis experience went something like this, an excerpt from my book:
"The appointment was scary, no doubt about that. The surgeon wasn't scary; he had a confident yet gentle, and soft-spoken demeanor. He told me I was not alone. At first I thought that was an odd thing to say, but as I pondered it I realized I do feel alone. After all, I am the only one inside my head. He was willing to answer every one of my questions. I had a long list. He actually gently took my list from my hands and read each question quickly, saying 'yes' or 'no' in response, giving a short explanation if needed. He didn't ignore a single question. What I needed to know so badly, he couldn't tell me for sure. I asked, 'Do I have hydrocephalus because I fell and hit my head?' His answer was an immediate, 'No.' 'So, I had to be born with it and no one knew it was there?' I asked. He nodded his head yes. He had seen a lot of cases of hydrocephalus, I reminded myself. He should know. He showed me the MRI images of my brain, and specifically, the colorful hour glass shaped Aqueduct of Sylvius connecting the lateral and third ventricles with the fourth ventricle. Do you recall my lesson on Minnehaha Creek and the four lakes it connects? Do you remember the beavers? Well, my Aqueduct of Sylvius was shaped like an hour glass. It wasn't supposed to be. There was a stenosis, or narrowing of the flow, right in the middle and the fluid had backed up on either side of the stenosis, creating an hour glass shape where there was supposed to be a straight, open canal. The surgeon said this particular condition, aqueductal stenosis, is almost always congenital. I was born with it. The beavers had been busy during my gestation in the womb.
"I was in disbelief. How could I have had hydrocephalus for forty-five years without anyone knowing it?
"The solution, I was told, was to surgically place a shunt in my brain to drain off the excess cerebrospinal fluid. A ventriculoperitoneal shunt is a long silicone catheter placed with one end in one of the lateral ventricles, sliding the other end under my skin all the way down to my peritoneal cavity. The end in my brain (the anterior end) would have a one way valve on it that could be set to open when the pressure in the ventricles reached a predetermined setting. Then, fluid would travel down the catheter and be absorbed in my peritoneal cavity, the space in which the lower half of my internal organs lies. The valve setting would control how much CSF is allowed to travel down the catheter and when.
"'So, we should schedule your surgery soon.'
"Brain surgery? But this was not on my agenda, my life's plan!"
Complications with my shunt, or possibly living for forty-five years with a brain condition my body had to compensate for, later caused me to permanently lose some of my brain capabilities. I lost some of my short-term memory and executive function. This means that periodically I need to re-read my book The Lakes In My Head to remind myself why I am anxious about forgetting things. It brings me wondrous relief from anxiety; it eventually returns, but I can take comfort in remembering why it's there to begin with. Writing the book was hard work, but well worth the effort!