Aging Out of Pediatric Care: A Cautionary Tale

Tags: , , , , , ,

Dan Kricke, living with hydrocephalusBy Dan Kricke
Guest Blogger

Four.

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

Click here to read other blogs written by Dan. READ MORE

8 Comments for : Aging Out of Pediatric Care: A Cautionary Tale
    • Geri Spencer
    • February 16, 2017
    Reply

    Sorry you had to go thru this, my daughter is 41 and had her shunt placed at 7 days. Revised twice in first year and then only lengthened at age 13. She too had slit ventricles a condition I know very little about. Her neurosurgeon retired and was replaced by an excellent MD who follows her now. We are at a medical center in MA and that makes all the difference? My best to you

    • Jane Jepson
    • February 9, 2017
    Reply

    Your story makes my heart hurt. My daughter is 27 now and we still don’t have good follow up for her hydrocephalus in an adult setting. She has two shunts, and has endured over 8 revisions. She always received the best care in the children’s hospital but by the time she reached 20 she could no longer continue using the facility. MRI’s are particularly problematic because the adult hospital doesn’t seam to take into consideration the need to check valve pressure settings after the MRI. We also don’t get definitive answers about shunt effectiveness, optimal valve settings and tweaks that might maximize cognitive function and minimize pain levels.

    Your story reminds me that as a mother, I need to continue to be persistent and advocate for the health and well-being of my adult daughter.

    Thank you.

    • Cherie
    • February 8, 2017
    Reply

    Thanks for sharing. I am 43 and have only had one revision at the age of 13. Fortunately, I only had one incident in which I had a headache that I thought could have been shunt related. Thankfully, it was not. I’m now in a situation in which I need information about my shunt and do not have a neurosurgeon with whom I have a history. It’s very frustrating. I wish I would have known the importance of shunt follow up.

    • Elmaré van der Merwe
    • February 8, 2017
    Reply

    Thank you for sharing your story. You were so lucky for having a happy ending. I am from South Africa and my son has hydrocephalus. He is almost 15 years old and never had a shunt revision. We don’t have a hydrocephalus association or any kind of hydrocephalus support system here. We don’t know anyone else with hydrocephalus either. Luckily our neurosurgeon is a surgeon for both children and adults. He is brilliant.

      • Lisa
      • June 14, 2017
      Reply

      Hi Elmare I am also in south Africa and as a 50 year old with two shunts which I only had done in the last 4 years it has been an ongoing slog. I to have a super neurosurgeon who has taken care of me through 10 of my 11 surgeries and have told him he will have no chance of ever escaping from me, however always good to know of another neurosurgeon that is well studied on shunts specifically.

    • Jocelyn Keat
    • February 8, 2017
    Reply

    Thank you for sharing this story. I was aged out, part of the Kaiser Permanente system, there was never a plan set for me. I was experiencing troubling symptoms one day & with my dad’s help, got a hold of a past neurosurgeon who had treated me, & got a referral. But, up until that point, there was never a plan, my hydrocephalus was never really an issue. I was about 25 at the time, 2 shunt surgeries ever, & as it turns out, I was ok, just experiences migraines for the first time.

    • Cheri
    • February 7, 2017
    Reply

    This is a heartbreaking story that fortunately has a happy ending, but forces me to ask why the pediatric neurosurgeons aren’t referring ‘aging’ patients to colleagues who can treat adult hydrocephalus. Why does each patient have to reinvent the wheel? Seamless medical care is critical and it’s just unfair to leave something this important up to chance.

  1. Reply

    Thank you for sharing your story! I too have felt the confusion of the system in the midst of an angry headache. Thankfully, after being irritated by a couple of referrals to simple neurologists, I was able to find a neurosurgeon who is thorough and in town too.

Leave a Comment

Change this in Theme Options
Change this in Theme Options