because your dura maters ®

Our mission at the Spinal CSF Leak Foundation is to reduce the suffering of any person affected by spinal cerebrospinal fluid (CSF) leak and/or intracranial hypotension. With the right diagnosis and access to the right testing and treatments, more patients will have an improved quality of life.

Emily, Spinal CSF leak patient

What is Spinal CSF Leak?

Spinal cerebrospinal fluid (CSF) leak is an important and underdiagnosed cause of new onset head pain that is treatable and curable in many cases.

Upright Headache -  my spinal CSF leak

Have a look at our animated video with Anna explaining spinal CSF leak.

Spinal cerebrospinal fluid (CSF) leak is a debilitating and underdiagnosed neurological condition caused by leakage of CSF through the spinal dura mater. The dura mater is a membrane that holds CSF in and around the brain and spinal cord. Leakage of CSF can occur through a tear or other defect in the dura mater, or through an abnormal connection to a paraspinal vein. The resulting loss of CSF volume can lead to reduced CSF pressure around the brain, referred to as intracranial hypotension.

While there are a number of disabling neurological symptoms of spinal CSF leak, the most common symptom is head pain that worsens after minutes to hours upright and improves while lying flat, or head pain that is less obviously positional but gets worse as the day goes on. Frequently, this symptom is mistaken for a migraine headache, or is attributed to another cause. Many patients lose the ability to work. Very rarely, this can be life-threatening.

This is a diagnosis that tends to be missed when it occurs spontaneously, while cases that arise secondary to medical procedures such as lumbar punctures and/or and spinal surgery are often recognized more quickly.  Although outcomes improve with early treatment, many spinal CSF leak patients face misdiagnosis and delays in accessing care. Greater awareness and education are needed to increase recognition of the condition among healthcare professionals and the general public.

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With your help, we are making a difference in the lives of individuals affected by spinal CSF leak. Join us in furthering our mission!

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Watch and read about our patient storytellers as they share their lived experiences with spinal CSF leak.

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ileak registry℠

An international patient registry for spinal CSF leak

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