Spina bifida

What is hydrocephalus?

Hydrocephalus is caused by a build-up of cerebro-spinal fluid (CSF) in the ventricles of the brain. It may be referred to as ‘water on the brain’.
Specialists will use MRI or CT scans to diagnose hydrocephalus.
A shunt (small tube) can be used to drain excess fluid. It is implanted into the skull to drain the fluid. Untreated, it can be fatal.

What causes hydrocephalus?

It can occur in association with spina bifida. Other causes include infections such as meningitis, premature birth, a head injury or a stroke. Hydrocephalus can lead to problems with skills such as concentration, short-term memory, organisation and coordination.

What are the symptoms of hydrocephalus?

The damage to the brain from hydrocephalus can cause a wide range of symptoms, including:

  • headache
  • being sick
  • blurred vision
  • difficulty walking

Source: NHS

Are you affected by hydrocephalus?

Hydrocephalus can cause many different challenges in patients’ lives. Such as:

Getting on with others (social difficulties).
Managing how they feel about things (emotional difficulties).
Knowing how to act (behavioural difficulties).

Source: Hydrocephalus Scotland

If you’re affected by hydrocephalus, The Brain Charity can support you.

We are the only charity in the UK to be here for every one of the more than 600 different neurological conditions in existence. Individually, many are rare, but combined, they affect 1 in 6 people.

We provide practical help on all aspects of living with hydrocephalus, emotional support such as counselling, phone befriending and group therapy and social activities to people with hydrocephalus from all over the UK from our centre in Liverpool.

Looking to talk to someone?

Woman smiling, making eye contact and holding the hand of another woman to comfort her

Phone us

Contact The Brain Charity now

Our friendly Information & Advice Officers are here to help. We endeavour to respond to all enquiries within 10 working days.

0151 298 2999

Looking to talk to someone?

  • Please tell us which neurological condition you are affected by and what you need support with.

Caring for someone with hydrocephalus

With Hydrocephalus it’s important to monitor your loved ones symptoms or behaviour, to catch anything out of the ordinary. If there is a dramatic change, this could signal a problem.

Hydrocephalus can be an overwhelming condition, affecting both the patient and the carer. Therefore, it is essential to seek support from relevant groups.

Remember to take care of yourself as much as you care for your loved ones. If you require assistance or simply want a friendly chat, our compassionate counsellors and befrienders are here for you.

We support carers, friends and family too

Are you a carer for or relative of someone with hydrocephalus? It’s just as important for you to look after your own physical and mental wellbeing too.

The Brain Charity provides free support for carers, friends and family of people with any form of neurological condition, including hydrocephalus, from anywhere in the UK.

We also run an additional carers advocacy service for all carers in Liverpool, regardless of which type of condition the person they care for has.

You don’t need to be a formal or registered carer

We can help you even if you don’t view yourself as a formal carer or claim Carer’s Allowance. Find out some of the ways we support carers below.

Other resources

The Brain Charity's library

The library at The Brain Charity has a range of resources on hydrocephalus and on a wide range of disability-related issues.

This includes Shine’s book for children about going to hospital “Benny gets bettter“.
Living With Normal Pressure Hydrocephalus by ASBAH, DVD, 2007
Roald Dahl’s Marvellous Medicine by Tom Solomon, Paperback, 2017

Support groups


Find support near you, including Shine networking events, services and online communities covering your area.

Other charities

Shine (formerly ASBAH, the Association for Spina Bifida and Hydrocephalus)


Helpline: 01733 555988

CSF Leak Association