What is syringomyelia?

Syringomyelia is a rare disorder in which fluid-filled cysts called a syrinx forms within the spinal cord. As the syrinx expands and lengthens over time, it compresses and damages part of the spinal cord from its centre outward.

What causes syringomyelia?

The main cause for this condition is believed to be associated with Chiari malformation, which is when the lower part of the brain shifts down into the spinal canal.

What are the symptoms of syringomyelia?

Symptoms of syringomyelia include:

  • A progressive weakness and pain in the back, shoulder, legs or arms
  • An inability to feel hot or cold
  • A loss of pain sensation
  • Difficulty walking
  • Bowel and bladder function problems
  • Facial pain and numbness
  • Curvature of the spine, or sclorosis

Are you affected by syringomyelia?

If you’re affected by syringomyelia, 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 syringomyelia, emotional support such as counselling, phone befriending and group therapy and social activities to people with syringomyelia 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 syringomyelia

We support carers, friends and family too

Are you a carer for or relative of someone with syringomyelia? 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 syringomyelia, 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 syringomyelia and on many other related neurological conditions

Visit our library to read:

Or search the catalogue online here.

Support groups

Chiari malformations group - a space for you

A private Facebook group run by the Brain & Spine Foundation.

Click here to visit this group.

Support groups at The Brain Charity

Are you interested in setting up a syringomyelia support group, or do you already run one? Email to let us know.

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

Other charities

Ann Conroy Trust

Contact (a charity for families with disabled children)

The Brain & Spine Foundation

The Walton Centre