By Dan Kricke
That is how many different hospitals I visited trying to transition from a pediatric neurosurgery program to an adult neurosurgery program in the midst of a shunt malfunction.
I was as scared, frustrated and upset as I’ve ever been as a hospital patient.
It hardly made any sense at all. It wasn’t as if I developed hydrocephalus on the cusp of adulthood and then quickly had to transition from pediatric to adult doctors. I had been with the same neurosurgeon and hospital system for two decades. The second of those two decades was a quiet one as far as my hydrocephalus was concerned. A revision of my malfunctioning shunt around age 12 with another around age 14 and then nothing.
From age 14 to 26, I would head in to see my neurosurgeon for routine check-ups every few years and little else. I’d have a few pressure headaches and migraines here or there but they’d fade away well before anyone thought it was time for me to head to the hospital.
But then for a few weeks in the middle of winter, I couldn’t shake out of…something. I didn’t even know what it was. My head didn’t hurt that bad. But I felt so lethargic. Suddenly there was a constant pressure in my head. Not nearly as bad as some migraines I’ve had in the past, but it just wouldn’t go away.
I discussed it with my mom and we called the office of the neurosurgeon I’ve seen since I was a kid. They said because I was 25 I should see an adult neurosurgeon, but didn’t recommend anyone in particular. So my mom, the advocate that she has always been, went about searching for someone familiar with hydrocephalus that could help.
I wound up at a different hospital speaking with a neurosurgeon who explained that although he treated adults with hydrocephalus, he didn’t have the right equipment to treat me because I had “Slit Ventricle Syndrome” and he suggested I go back to the hospital that placed the shunt.
So we called the first hospital back up and explained the situation. They told me to come in and I transitioned from an ER waiting room to an exam room where I waited for a long time, only to be told by the neurosurgeon on call that I was too old to be treated at the hospital. As I looked on, transformed from a 26 year-old adult to a helpless patient in pain trying to keep my headache under control with little more than hope, my mom sprang into action. She demanded to know why we were being treated this way. She spoke with hospital officials at length who apologized for telling her to come in and told us to go to their affiliate hospital that treats adults.
At the third hospital, we again explained my situation and I was examined by an on-call neurosurgeon who, I think, may have never heard of hydrocephalus. I will never forget when the surgeon said, “Well, I’ve googled your symptoms…” This is a major hospital in a metropolitan city and they’re googling hydrocephalus symptoms?
They gave me something in an IV to help with my headache and relax me. Whatever they put in my IV made my skin crawl. I was hot and cold and hot again. My heart was racing. It was the worst I had felt throughout the entire ordeal. As I waited for this terrible medicine’s effects to pass, that was the last straw for my mom.
She called the pediatric neurosurgeon’s office and explained our journey and demanded an actual referral from my long-time neurosurgeon so we could get out of the hospital we were sitting in.
I’d like to emphasize again how scared I was at this point. I’ve never particularly liked being in the hospital but I’ve never felt like the treatment I was getting would be detrimental to my recovery. Now suddenly I was visiting three hospitals in a day and trying to figure out how to keep from falling apart emotionally. This all started with me feeling a little tired and suddenly I didn’t know who was going to help me.
My mom’s call generated results this time, as we wound up in the office of a neurosurgeon who, long story short, booked me for a shunt revision surgery in short order. He replaced the old shunt valve I had been using since I was a child with a newer adjustable model. I was out of the hospital and feeling like my old self in a matter of days.
Ultimately, I wound up needing a few more revisions a few years later, but if I hadn’t gotten to the neurosurgeon I wound up with, I don’t know that I would have been around to get those additional revisions and meet and marry the love of my life.
My current neurosurgeon has remarked how strange he thinks it is that there isn’t a better transition system for children seeing neurosurgeons as they grow into adults. And I suppose I shoulder part of the blame in waiting until a time of medical crisis to transition, but there has to be a better way.
I’m sharing this story both as a cautionary tale, to encourage anyone with a child who is going to age out of their pediatric hospital, to work on finding an adult neurosurgeon equivalent as soon as possible, and also to spotlight a way in which a system that should have been protecting its patients did such a lousy job with one in particular.
Click here to learn more about the Hydrocephalus Association’s upcoming Transition Summit: Tackling the Challenges of Transitioning from Pediatric to Adult Medical Care
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