Hydrocephalus living

Overview

Hydrocephalus is a condition where there is too much cerebrospinal fluid—the clear fluid that surrounds and cushions the brain and spinal cord—inside the brain's ventricles, which are hollow spaces. This extra fluid builds up and increases pressure on the brain, which can cause damage if not treated.

It is not a very common condition, but it affects roughly 1 in 500 to 1,000 babies born in the UK. It can also develop later in life after a brain injury, infection, or as part of aging.

Hydrocephalus can affect anyone at any age. In babies and children, it is often present at birth. In older adults, a specific type called normal pressure hydrocephalus (NPH) may develop, causing walking problems, memory issues, and bladder difficulties.

Symptoms

Common symptoms

• Headaches, especially in the morning
• Nausea or vomiting
• Blurred or double vision
• Drowsiness or unusual tiredness
• Poor balance or coordination
• Difficulty concentrating or thinking clearly
• Changes in mood or personality

Symptoms in children

• Rapidly enlarging head or unusually large head size
• A tense, bulging soft spot (fontanelle) on the top of the head
• Downward-looking eyes, sometimes called 'sunset eyes'
• High-pitched or shrill cry
• Poor feeding or projectile vomiting
• Seizures

Symptoms in older adults

• Difficulty walking, feeling like feet are stuck or glued to the floor
• Mild forgetfulness or slower thinking
• Mood changes, like depression or anxiety
• Frequent urination or sudden loss of bladder control
• Difficulty with daily tasks, like dressing or cooking

Causes

Main causes

• Hydrocephalus occurs when the flow of cerebrospinal fluid is blocked, when the body produces too much of it, or when the fluid is not absorbed properly into the circulatory system.
• It can be congenital (present at birth) due to brain or spinal cord birth defects, such as spina bifida or aqueductal stenosis.
• It can be acquired later in life due to bleeding in the brain, brain infections (like meningitis), brain tumors, head injuries, or after brain surgery.

Risk factors

• Being born prematurely (before 37 weeks)
• Having a family history or being born with certain conditions, like spina bifida
• Experiencing a traumatic brain injury or head injury
• Having a brain infection, such as meningitis or encephalitis
• Growing older — the risk of normal pressure hydrocephalus increases after age 60

When to see a doctor

See a doctor urgently if:

• If you or your child has any of the emergency symptoms listed above, such as seizures, a sudden severe headache, loss of consciousness, or difficulty breathing, call your local emergency number immediately.
• If you have a condition like a brain tumor or recent head injury and develop symptoms of increased pressure, seek immediate medical care.

Book a routine appointment if:

• If you notice new, persistent headaches, vision problems, trouble walking, or memory changes, make an appointment with your general practitioner or neurologist.
• If you have a shunt (a drain inserted in the brain), you need regular check-ups as recommended by your neurosurgeon. Contact them if you suspect any problem, such as redness, swelling, fluid leaking under the skin, or fever.
• If you are a parent of a child with hydrocephalus, keep all pediatric and specialist appointments to monitor development and shunt function.

Diagnosis

Doctors diagnose hydrocephalus by reviewing your or your child's medical history, asking about symptoms, and using brain imaging to look for signs of fluid buildup and enlarged ventricles. In babies, ultrasound can be used through the soft spot on the head. In older children and adults, CT or MRI scans are more common.

Tests that may be done

• CT scan (computed tomography) — a series of X-rays that give a cross-sectional image of the brain
• MRI scan (magnetic resonance imaging) — uses magnetic fields to create detailed images of the brain
• Ultrasound — often used in infants through the fontanelle
• Lumbar puncture (spinal tap) — may be used in older adults to measure fluid pressure and sometimes to see if symptoms improve
• Neuropsychological tests — to check memory, thinking, and problem-solving skills, especially in older adults

What to expect at your appointment

The diagnostic process is usually painless and safe. You may need to visit a hospital or imaging center. If hydrocephalus is suspected, your doctor will explain the findings and refer you to a neurologist or neurosurgeon for further assessment. You may undergo more than one test to get a complete picture.

Treatment

The main treatment for hydrocephalus is surgery. The goal is to relieve pressure on the brain by improving the flow or absorption of cerebrospinal fluid. Surgery is done by a specialist called a neurosurgeon. Medication is not a cure but may be used in certain situations to reduce fluid production while waiting for surgery, and it is always prescribed and supervised by a specialist.

Self-care at home

• Learn the signs that your shunt may be failing, such as headaches, vomiting, or irritability, and know when to call your care team.
• Keep a symptom diary — noting when headaches happen, how long they last, and what makes them better or worse.
• Protect your head from injury: wear a helmet when cycling, skiing, or skating, and avoid risky activities that could cause a concussive blow unless your doctor has cleared you.
• Pace yourself during the day, and rest when you feel tired or overwhelmed.

Medical treatments

Surgery is the standard treatment. One common operation is placing a shunt: a thin, flexible catheter is inserted into the brain's ventricles, and the tube is tunneled under the skin to a part of the body where the fluid can be absorbed, usually the abdomen. Another option is endoscopic third ventriculostomy (ETV), in which the surgeon uses a small camera (endoscope) to create a tiny new pathway inside the brain so the fluid can flow out of the ventricles naturally. Your neurosurgeon will discuss which approach is safest and most effective for your specific situation. Medications are rarely the main treatment; some medicines may be used temporarily, but no drug can cure the blockage.

When is surgery considered?

Surgery is usually recommended as soon as hydrocephalus is diagnosed and is causing symptoms. The exact timing and type of surgery depend on the cause, your age, and your overall health. For many people, surgery is the first and most effective treatment. Early treatment helps prevent irreversible brain damage.

Living with this condition

Living with hydrocephalus means becoming familiar with how your body feels and knowing when to seek help. Many people care for a shunt for years with regular check-ups and no major problems. It's helpful to keep a list of medical details, including the type of shunt you have (if any), your surgeon's contact information, and any medications you take, and to carry this in your wallet or on your phone.

Lifestyle tips

• Stay physically active with low-impact activities like walking, swimming, or gentle yoga — but get your doctor's advice about contact sports or anything that risks head injury.
• Maintain a regular sleep schedule and find ways to manage stress, such as breathing exercises, mindfulness, or time in nature.
• Build a reliable healthcare team: a neurologist, neurosurgeon, general practitioner, and, if needed, physiotherapist, occupational therapist, or clinical psychologist.
• Talk to your employer, school, or family about reasonable adjustments — like taking breaks, having a quiet workspace, or a flexible schedule.

Diet and exercise

Eat a balanced diet full of fruits, vegetables, whole grains, lean proteins, and healthy fats. Stay hydrated by drinking enough fluids, unless your doctor tells you to restrict them. Gentle, regular exercise helps keep your muscles strong, your balance sharp, and your mood bright. Avoid heavy lifting or sudden, jarring movements that could strain your neck or head, especially after surgery. Check with your healthcare team before starting a new exercise program.

Mental health and emotional wellbeing

Living with a chronic condition can bring anxiety, low mood, or frustration. You might worry about shunt failures, hospital stays, or how the condition affects your future. These feelings are completely understandable. It's important to talk about them — with a loved one, a counselor, or in a support group. Mindfulness and relaxation exercises can also help. If you feel in crisis, or have thoughts of harming yourself, reach out to your local emergency services or a mental health crisis line right away.

Prevention

Most cases of hydrocephalus cannot be prevented, especially those that are congenital (present at birth). However, you can reduce the risk of acquired hydrocephalus by protecting your head from injury: wear seatbelts, helmets when biking or skating, and take safety precautions at home and work. Treating infections like meningitis promptly may also reduce risk.

Vaccines

Some infections that can lead to hydrocephalus, such as bacterial meningitis, can be partly prevented by routine childhood vaccinations. Talk to your local health service about recommended vaccines for you and your children.

Screening programmes

There is no routine screening test for hydrocephalus in the general population. During pregnancy, ultrasound scans might sometimes show signs of hydrocephalus in the baby, but not always. In older adults, a doctor may recommend brain imaging if there are symptoms like walking problems or memory loss that could suggest normal pressure hydrocephalus.

Complications

If left untreated

• If pressure in the brain rises too high and is not treated, it can permanently damage brain tissue, leading to learning disabilities, vision loss, hearing problems, or seizures.
• Severe untreated hydrocephalus can become life-threatening as pressure compresses vital brain structures.
• For people with shunts, complications can arise, such as a blocked shunt (backup of fluid) or an infection, which need prompt medical or surgical care.

Long-term outlook

With timely and proper treatment, the outlook for hydrocephalus is often good. Most people live full, productive lives, with only minor adjustments. Shunt failures or infections can happen, but they are treatable. Young children often catch up developmentally with support. The key is regular follow-up with your specialist team and knowing the warning signs. There is every reason to be hopeful and to focus on living well — one day, one step at a time.

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