Lynn, 54

Lynn (second from the left) and her family.

For the first 40 years of my life, “hydrocephalus” was a term that I was vaguely familiar with but knew very little about. Shortly after I turned 40, I started waking up with a severe headache every morning. I had never had allergies or sinus problems, but after a few weeks of having the headaches I assumed I had a sinus infection, so I scheduled an appointment with my doctor. The doctor agreed that it sounded like a sinus infection and prescribed an antibiotic. The medicine seemed to help little by little, and after a couple of prescription refills my headaches were finally gone. In October of 2007 I threw away the last few doses of my medicine. But when I woke up two days later, my neck was so sore I could not turn my head without excruciating pain. I stayed home from work that day and the next day. When it was no better on the third day, I called my doctor. When I described my symptoms to him over the phone, he did not think the neck pain was related to my headaches, but wanted me to come in just to check it out. He wanted to rule out the possibility that I had a cerebral hemorrhage, so he ordered a CT scan. I will never forget receiving the phone call the next day: it was the doctor telling me that the scan had shown that I have hydrocephalus.

The next few weeks were filled with doctor’s appointments. My first visit was with a neurologist: at that point, they did not know whether my hydrocephalus was chronic or acute. The neurologist determined that it was chronic: that I had probably had hydrocephalus since birth, or from a very young age. He felt that I did not need surgery right away, but referred me to a neurosurgeon for a second opinion. The neurosurgeon confirmed the diagnosis and conclusions. But neither the neurologist or the neurosurgeon had much experience with compensated hydrocephalus, so after doing some research on my own, I learned about Dr. Michael Williams. I had my first appointment with Dr. Williams in February of 2008. He performed some baseline neuropsychological tests and recommended that we monitor my condition on an annual basis.

I continued to see Dr. Williams once a year until 2012, when my test results showed a significant decline and he referred me to Dr. Mark Luciano, a neurosurgeon who was at the Cleveland Clinic at that time. Dr. Luciano specializes in ETV surgery, which was a viable option for me rather than the more common shunt surgery. I had a successful endoscopic ventriculostomy in June 2013. The surgery went well, although it took a couple months before I could return full-time to my job. For the next few years, I was again symptom free! But for the past couple of years, I have started having frequent headaches again, although not as severe as before the surgery. And I am starting to have some balance issues as well. I was scheduled to have a lumbar drain in April, but it has been postponed due to the COVID-19 pandemic. Hopefully the lumbar drain will alleviate some of my symptoms.

I have attended a few of the Hydrocephalus Association National Conferences since my initial diagnosis, and it has been wonderful to have the opportunity to meet and hear the stories of others who are living with hydrocephalus! The conferences have helped me to realize that people living with hydrocephalus travel down many different paths, and that my path has been much easier than most others. That realization has not only made it easier for me to deal with my daily headaches and other symptoms, but it led me to actually make a career change. I found myself yearning to work in a role where I could really make a difference in people’s lives. Now I work as a software trainer for a company that gives opportunities to people who are unemployed or underemployed. The classes I teach help these students develop the technical knowledge needed to transition into full-time, salaried positions in Information Technology, and my company hires many of these graduates. I also volunteer twice a month at the local Ronald McDonald House, and am helping with the planning for this year’s Cincinnati WALK to End Hydrocephalus!

Tell us about your journey with hydrocephalus!

Hydrocephalus affects each of us differently. Share your story of hope with us! We will feature the amazing individuals in our community on our website and through social media. Submit your story today!

Let’s SHARE. Let’s CONNECT. Let’s raise AWARENESS! Let’s INSPIRE!

For questions, email: ines@hydroassoc.org with the subject line “Share Your Story”.

Become a Grassroots Advocate for Hydrocephalus today! Click here to join the Hydrocephalus Action Network.

Change this in Theme Options
Change this in Theme Options