Fred

My journey with hydrocephalus began in 1963 during the JFK administration, a time when medical understanding of conditions like hydrocephalus was still evolving. As a baby, I faced a daunting diagnosis: a significant amount of cerebrospinal fluid (CSF) in my brain and two inoperable cysts discovered during my infancy. At just two weeks old, I underwent a crucial procedure to have a ventriculoatrial (VA) shunt placed to manage my condition. 

Despite medical advances, hydrocephalus management in the 1960s and 1970s was still evolving, and doctors were not optimistic about my prognosis. However, I defied expectations and grew into a relatively healthy child. My first significant medical challenge occurred in 1980 when I developed a fever, began vomiting, and experienced excruciating head pain that felt as if my head might explode. I was hospitalized due to a severe shunt infection and became critically ill; on my first night in the hospital, I was clinically dead for one minute. This terrifying experience not only shaped my life but also instilled in me the importance of self-advocacy in healthcare. It was during this time that I began to take charge of my condition. 

In addition to my medical struggles, I faced social and academic challenges. My early childhood was marked by developmental delays, and I faced bullying in elementary school due to misconceptions about my condition. Others believed I had a steel plate in my head, not understanding the complexities of hydrocephalus. Yet, I remained determined; by the 9th grade, in 1979, I achieved perfect attendance and graduated in 1982. 

In 2006 my life took another turn when I relocated to the Pacific Northwest. Shortly after my move to Lynnwood, WA, in 2009, I began experiencing troubling symptoms again. After an extensive search for a medical team and a referral from my primary care doctor, I finally found Virginia Mason Medical Center. Although securing an appointment there was challenging, I eventually did. It was there that I received a programmable valve and ventriculoperitoneal (VP) shunt that drains fluid into my peritoneal cavity rather than my heart. This shunt significantly enhanced my quality of life by helping to regulate the pressure in my brain. 

In 2012, two years after my surgery, complications emerged when I required a setting adjustment. While attending a conference with the North Sound Behavioral Health Administration, where I had just begun my fourteenth year on the advisory board, I developed dual subdural hematomas. These were likely caused by changes in elevation during travel. My neurosurgeon at Virginia Mason adjusted the settings of my shunt, leading to the eventual resolution of the hematomas. Fortunately, I was able to recover without the need for any additional invasive procedures. 

In addition to my hydrocephalus, I’ve developed several comorbidities, including heart disease, which have added complexity to my life. Since 2016, I have also been managing chronic migraines through regular Botox injections administered by my neurologist at Virginia Mason.  

I discovered the Hydrocephalus Association (HA) through an online search and found fulfillment in the Peer Support Program, HydrocephalusCONNECT. Inspired by the stories of others, I value the connections made through shared experiences. With a background in psychosocial organizations in Michigan and as part of the advisory board for Serenity Club in Washington state, I’m passionate about advocacy and support within the hydrocephalus community. 

Reflecting on my journey, I see how the challenges of living with hydrocephalus have shaped me, fostering resilience along the way. Though I have faced countless challenges, I have no regrets about the path I’ve traveled. The most meaningful parts of my life now involve sharing my story, advocating for others, and thriving despite my condition. 

---

Tell us about your journey with hydrocephalus!

Share your story of hope and perseverance with us! We will feature the amazing individuals in our community who are living life to the fullest regardless of their condition! Stories are reviewed by our staff and posted on our website and through social media. Stories should be no more than 800 words long. Click here to submit your story today!

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

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

Become a Grassroots Advocate for Hydrocephalus today! Visit our Advocacy Action Center.