We are a UK-based Scottish Charitable Incorporated Organisation and registered charity working to raise the profile and support understanding of cerebrospinal fluid (CSF) leaks. We also aim to provide support and advice for sufferers, their families and supporters, and a resource for the medical profession.
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, cranial pressure and volume 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.
Research shows that at least 5 in 100,000 people each year are affected by spontaneous CSF leaks, with many more suffering from iatrogenic or traumatic CSF leaks. They are not rare, yet are generally under-diagnosed; misdiagnosis of migraine, sinusitis and other headache disorders is common place, and on average correct diagnosis takes 13 months from onset.
Whatever the circumstances and severity of the symptoms, a CSF Leak is painful, debilitating and life-changing. There is very little awareness amongst the general public and very little support for those in need.
We hope this website will raise the profile and promote awareness of CSF Leaks, and the associated medical condition, Intracranial Hypotension, and provide access to much needed help, support and information.