Posterior fossa syndrome

Cerebellar mutism syndrome, CMS

What is posterior fossa syndrome?

Posterior fossa syndrome is the name given to a collection of symptoms that may occur in children after they have had surgery at the back of the brain.

What causes posterior fossa syndrome?

The exact cause of posterior fossa syndrome is unknown; however, some evidence suggests that it is due to a disruption in signals in the brain that are responsible for processing information, sensations and body movements.

It may occur after surgery on a part of the brain called the cerebellum, which is responsible for balance and coordination, and the brainstem, which is responsible for basic functions including breathing, heart rate and body temperature. These surgeries are often carried out to remove a cancerous brain tumour called medulloblastoma.

What are the symptoms of posterior fossa syndrome?

The symptoms of posterior fossa syndrome usually occur 1-10 days after surgery and can last weeks, months or years. The severity differs between children.

They may include:

  • Problems with speech, language and swallowing
  • Problems with muscle tone, motor control and movement
  • Mood, behaviour and sensory changes
  • A decrease in cognitive function

Are you affected by posterior fossa syndrome?

If you’re affected by posterior fossa syndrome, 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 posterior fossa syndrome, emotional support such as counselling, phone befriending and group therapy and social activities to people with posterior fossa syndrome and their family, friends and carers 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 posterior fossa syndrome

We support carers, friends and family too

Are you a carer for or relative of someone with posterior fossa syndrome? 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 posterior fossa syndrome, 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 Brain Charity’s library has a range of resources on neurological conditions and on many other disability-related issues.

Support groups

Posterior fossa syndrome parents group

A Facebook group run by the Danny Green Fund that provides the opportunity for parents of children who are affected by posterior fossa syndrome to share their experiences and to support one another.

Website: www.facebook.com/groups/612377382148658

Phone: 07979 333 283

Email: info@thedannygreenfund.co.uk

The Danny Green Fund

Provides grants to fund a range of therapies or pieces of equipment to support children who have been affected by posterior fossa syndrome in their recovery.

Website: www.thedannygreenfund.org.uk/pfs

Phone: 07979 333 283

Email: info@thedannygreenfund.co.uk

Brainstrust

A Facebook group run by Brainstrust where those who have been affected by a brain tumour and their families and carers can communicate, ask questions and get information.

Website: https://www.facebook.com/groups/braintumoursupportbrainstrust

Phone: 0198 329 2405

Email: hello@brainstrust.org.uk

Support groups at The Brain Charity

Are you interested in setting up a posterior fossa syndrome support group, or do you already run one? Email activities@thebraincharity.org.uk to let us know.

Alternatively, you can check out our list of related support groups here.

Other charities

Children’s Cancer and Leukaemia Group

The Brain Tumour Charity