because your dura maters ®

Our mission at the Spinal CSF Leak Foundation is to reduce the suffering of persons affected by intracranial hypotension or spinal cerebrospinal fluid leak. 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?

Spontaneous intracranial hypotension due to spinal cerebrospinal fluid (CSF) leak is an important and under-diagnosed cause of new onset headache that is treatable and curable in many cases.

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

Cerebrospinal fluid  is a special fluid that bathes and supports the brain and spinal cord. When the tough layer called the dura mater that holds CSF in around the brain and spinal cord has a hole, tear, or defect along the spine, this results in a loss of CSF volume. This is called a spinal CSF leak, which is the underlying cause of intracranial hypotension.

While there are a number of 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. Most of the time, this is mistaken as a migraine headache, or is attributed to another cause. Many patients are quite disabled by their limited functional upright time each day. Very rarely, this can be life-threatening.

This is a diagnosis that tends to be missed when it occurs out of the blue, while cases that arise after medical procedures like spinal taps and spinal surgery are usually recognized more quickly.  However, there is hope: Like a plumbing leak, a spinal CSF leak can often (but not always) be fixed.

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

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