A lived-experience perspective

Hydrocephalus is a neurological condition caused by an abnormal buildup of cerebrospinal fluid (CSF) in the brain. CSF plays a critical role in protecting the brain and maintaining normal function, but when its flow or absorption is disrupted, intracranial pressure (ICP) rises.

Because the skull is a fixed space, even small increases in fluid can cause significant pressure.

• Normal ICP: 5–15 mmHg
• Elevated ICP: 20–25 mmHg or higher

Symptoms of Elevated ICP

• Persistent or severe headaches
• Nausea and vomiting
• Cognitive changes or confusion
• Visual disturbances (including papilledema)
• Fatigue and pressure sensations

Slit Ventricle Syndrome (SVS)

In individuals with long-term shunting, the ventricles may become abnormally small, a condition known as slit ventricle syndrome. When this occurs, even minor changes in CSF volume can trigger major symptoms. Imaging may appear stable, yet pressure-related symptoms persist—making diagnosis and management more complex.

Shunt Types

• Ventriculoperitoneal (VP) Shunt: drains CSF into the abdomen
• Ventriculoatrial (VA) Shunt: drains CSF into the bloodstream near the heart

Both serve the same purpose: protecting the brain by regulating pressure.

A Personal Perspective

Having lived with hydrocephalus since infancy—and through numerous surgeries—I understand that this condition is more than a diagnosis. It’s learning to recognize subtle symptoms, advocating when something feels wrong, and trusting lived experience alongside medical data.

Hydrocephalus is invisible to many, but its impact is profound. Awareness, understanding, and listening save lives.