Bill

I was born in the late 1960s, during a time when understanding hydrocephalus and treatment options was beginning to advance. As the firstborn of five-week premature identical twins, modern technology to diagnose hydrocephalus wasn’t available, leaving the exact cause and timing of my condition to speculation.  My medical records noted a condition described as “prenatal mobility of hyaline membrane”, which is now referred to as infantile respiratory distress syndrome. I believe this respiratory distress likely caused a brain bleed, leading to the development of my hydrocephalus.   

I was first shunted at four months old with a ventriculoatrial shunt (VA) shunt, which required a shunt revision four months later due to a blockage in the ventricular end. Just 11 days later, I was readmitted for another shunt revision and spent 14 nights in the hospital. During this hospital stay, I had an initial revision and a second revision just seven days later due to the shunt becoming blocked at the distal end, differing from the blockage at the proximal end that caused the first revision.  This would not be the last time I would spend an extended period of time in the hospital.  

Two weeks later I was readmitted for 17 days to undergo two revisions of the entire shunt system. It would be another 10 months until I required surgery again, this time to extend the length of my tubing for my VA shunt.  I finally reached a period of stability, requiring only one more surgery four years later, during which my shunt system was converted from a VA shunt to a ventriculoperitoneal (VP) shunt.  

My VP shunt was placed when I was six years old, and I remained asymptomatic for 35 years. From age 12 until age 33, I had no follow-up visits. I did not meet anyone with hydrocephalus nor the Hydrocephalus Association (HA) – a decision I deeply regret.  I am grateful that children now have so much more access to information and the opportunity to connect with peers who share this condition.  

Through my research, I recently learned that many individuals who underwent surgery as infants before the 1980s likely experienced procedures or invasive tests without anesthesia or pain management. While I suspect that most brain surgeries were performed with anesthesia—my medical records confirm its use—there is no evidence to suggest that pain control was provided for shunt taps or similar procedures used to drain or measure fluid levels. 

Having a shunt for thirty years without any imaging of the original device has made the journey to understand what happened to it, and to my hydrocephalus, both confusing and incomplete. I have been told there are pieces of my old shunt tubing that were never removed. While the old tubing is clearly seen on imaging, there are signals seen on scans that are unknown abnormalities. Some radiologists believe these signals to be white signals, multiple sclerosis (MS) lesions, or even evidence of mini-strokes, also known as lacunar infarcts. I’ve come to realize that there is still much to learn and understand about the long-term effects of shunting, particularly for those of us who were treated as infants 

My journey with hydrocephalus has been marked by confusion and uncertainty, based on the realities of being born in the 1960s when so little was known about the condition and advanced imaging wasn’t available.  I still find myself questioning the unusual course of my surgical history. My shunt reservoir has always been behind my right ear, as indicated by a cluster of deep, concave scars in the area. Yet I also have two smooth semi-circle white scars on the right side of my head, diagonally up and to the front of my ear. How and why they exist are still unknown to me. 

When my VA shunt was converted to a VP shunt, the surgeon went through my neck leaving me with a long, vivid scar. For a six-year-old, this scar was impossible to explain.  Looking back, I cringe at how lost I felt, unable to articulate my condition or the reasons for my surgeries. In my desperation, I resorted to telling other kids that I was cut open by an axe. It was such a foolish and dramatic lie that it felt easier than trying to explain what hydrocephalus was when I had no real understanding of it myself.  

That said, I realize how fortunate I am to have been very stable and healthy overall. After a revision in 2009, I have remained stable ever since. Despite the challenges, I earned a master’s degree, worked as a teacher and tutor, experienced marriage, and became a parent to a wonderful son. I deeply appreciate that this is not a typical outcome for everyone with this condition. Each person’s journey with hydrocephalus is unique, and every story is worth sharing. 

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