Living with hydrocephalus living

Overview

Hydrocephalus is a condition where extra fluid builds up in the spaces inside the brain. This fluid, called cerebrospinal fluid, normally cushions the brain and carries away waste. When too much of it collects, it raises pressure inside the skull and can cause brain damage.

Hydrocephalus is not extremely common, but it affects thousands of people each year worldwide. It is one of the most common conditions treated by pediatric brain surgeons.

Hydrocephalus can affect anyone. It can be present at birth (congenital) or develop later in life due to injury, infection, or other health conditions. It occurs in infants, children, and older adults.

Symptoms

Common symptoms

• Headache that is worse in the morning
• Nausea or vomiting
• Blurred or double vision
• Trouble walking or keeping balance
• Sleepiness or low energy
• Difficulty concentrating or memory problems

Symptoms in children

• An unusually large head or fast-growing head circumference in infants
• A bulging or tense soft spot (fontanel) on top of the head
• Eyes that look downward ('sunset eyes')
• Poor feeding or poor weight gain
• High-pitched cry or fussiness
• Seizures

Symptoms in older adults

• Slow, unsteady walking or feeling like the feet are stuck to the floor
• Mild memory loss or slow thinking
• Loss of bladder control or frequent urination
• Changes in personality or mood

Causes

Main causes

• Blockage in the normal flow of cerebrospinal fluid
• Poor absorption of the fluid into the bloodstream
• Excess production of cerebrospinal fluid (rare)

Risk factors

• Being born prematurely
• Birth defects such as spina bifida
• Brain injury, including from trauma or surgery
• Brain tumors or cysts
• Central nervous system infections like meningitis
• Bleeding in the brain

When to see a doctor

See a doctor urgently if:

• See a doctor the same day if you or your child has repeated headaches, vomiting, vision changes, or trouble walking.

Book a routine appointment if:

• Tell your regular doctor if you notice ongoing memory problems, balance trouble, or changes in urination. They can check what might be causing them.

Diagnosis

A doctor takes a detailed history, checks symptoms, and usually orders an imaging scan of the brain to look for extra fluid.

Tests that may be done

• Head ultrasound (often used in babies before the fontanel closes)
• CT scan (quick X-ray-like pictures of the brain)
• MRI scan (detailed images of the brain and fluid spaces)
• Monitoring of head size in infants

What to expect at your appointment

If the doctor suspects hydrocephalus, they may refer you to a neurologist (brain and nerve doctor) or a neurosurgeon (brain surgeon). The scan is painless and usually takes less than an hour.

Treatment

Hydrocephalus is most often treated with surgery that lowers the pressure by draining extra fluid. Some people need only short-term management, while others live with a drainage system for years. The right plan depends on the cause, age, and how severe the symptoms are.

Self-care at home

• Attend all follow-up appointments with your healthcare team
• Keep a record of headache or symptom changes to share with your doctor
• Protect your head — wear a helmet for biking, skating, or riding
• Avoid activities that involve serious head impact without medical advice

Medical treatments

Doctors may prescribe medicines to reduce fluid production or manage symptoms like headaches or seizures. Always talk to your healthcare provider about any medicine, as each person’s situation is different.

When is surgery considered?

Surgery is usually considered when symptoms or scans show dangerously high pressure. Two common types are a shunt (a thin tube placed to drain fluid to another part of the body) and an endoscopic third ventriculostomy, a procedure that creates a new pathway for fluid to flow.

Living with this condition

Living with hydrocephalus means learning to recognize early warning signs of pressure, such as a new or changing headache, vomiting, or vision trouble, and knowing when to get help. Many people manage well with regular medical care and a normal routine.

Lifestyle tips

• Stay active in safe ways — walking, swimming, and gentle sports are usually good
• Get enough rest and sleep; tiredness can make symptoms worse
• Keep a symptom diary if you tend to have headaches or balance issues
• Stay organized with a medical list and health appointments

Diet and exercise

A healthy balanced diet and regular gentle exercise help maintain overall brain health. Drinking enough water and eating regular meals can also help reduce headaches. Always check with your doctor about when you can return to contact sports after surgery.

Mental health and emotional wellbeing

Living with a long-term condition can cause stress, anxiety, or low mood. It is normal to feel worried or frustrated at times. Talking to a counsellor or joining a support group can help. In an emotional crisis, contact a local mental health helpline or go to the nearest emergency department.

Prevention

Most cases of hydrocephalus cannot be prevented because they start from a birth difference or unknown cause. However, you can lower your risk of some causes by preventing head injuries and getting timely treatment for infections like meningitis.

Vaccines

Vaccines that protect against certain types of meningitis and infections can help reduce one possible cause of hydrocephalus. Talk to your doctor about which vaccines are appropriate for you or your child.

Screening programmes

Screening for hydrocephalus is not routinely done in healthy people. During pregnancy, a routine ultrasound may sometimes show extra fluid in the brain, but not always. In infants, regular head measurement checks can suggest the need for further investigation.

Complications

If left untreated

• Permanent brain damage or intellectual disability
• Vision loss or difficulty with eye movement
• Problems with movement, balance, or coordination
• Seizures
• Learning difficulties in children

Long-term outlook

With early treatment, most people with hydrocephalus live long and productive lives. Some need ongoing care, but many lead full and independent lives. The outlook is often very good, especially when symptoms are recognized early and care is available.

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