On 17th May 2019, Roy Smith (HSF health plan Head of Sales, Business Development and Marketing, Ireland) and I, met Tamsin Trevarthen, Trustee of the CSF Leak Association in Dublin. We were there to assess a grant towards “Leakline” – an online education and support hub for people suffering with spinal CSF leaks.
About the CSF (Cerebrospinal Fluid) Leak Association
The CSF Leak Association is a UK-based Scottish Charitable Incorporated Organisation and registered charity working to raise the profile and support understanding of cerebrospinal fluid leaks across the UK and Ireland.
The charity is the only organisation which specifically supports people with this type of spinal leak. The CSF Leak Association aims to provide support and advice to sufferers, their families and supporters. It also acts as a resource for the medical profession.
What is a CSF Leak?
A CSF leak is a serious and often incapacitating medical condition stemming from a tear or hole in the membrane that contains the fluid surrounding the spinal cord and brain. It can occur in the head or spine as result of trauma, surgery, an underlying disorder, or spontaneously.
When fluid leaks out at spinal level, pressure and fluid volume around the brain reduces (known as intracranial hypotension) which allows the brain to sag within the skull. As a result of this ‘brain sag’, sufferers often experience severe and unrelenting head pain, pressure, visual disturbances, hearing impairment, tinnitus, spasms, seizures and a wide range of other symptoms.
Symptoms of a CSF Leak
A cranial CSF leak can give rise to a variety of symptoms, such as headache, visual disturbance and changes to hearing or ringing in the ears, as well as external CSF discharge, commonly to the throat and nose.
Meningitis risk is also elevated with a cranial CSF leak. Research shows that at least 5 in 100,000 people each year are affected by spontaneous spinal CSF leaks alone, with many more suffering from iatrogenic or traumatic spinal and cranial CSF leaks. These are not rare, yet are generally under-diagnosed; misdiagnosis of migraine, sinusitis and other headache disorders is commonplace, and on average correct diagnosis for spontaneous spinal leaks takes at least 13 months from onset.
Public awareness of CSF Leak
Whatever the circumstances and severity of the symptoms, a CSF Leak can be painful, debilitating and life-changing. There is very little awareness amongst the general public and very little support for those in need.
Tamsin explained that the charity website hub is extremely beneficial to CSF Leak patients as it provides specialist information and a way of meeting other people suffering from the condition. In fact, the hub is so successful that people in countries all around the world use the facility. That said, the website needs updating to ensure that the charity continues to grow and supports its beneficiaries.
It was very useful to visit Tamsin and find out about the CSF Leak Association.
Read the July 2019 update to our visit here.
Find out more about the CSF Leak Association