Today is DAY 1 of Spinal CSF Leak Awareness Week.

Spinal cerebrospinal fluid (CSF) leak is an important cause of new onset headache that can be very disabling. Importantly, it is treatable and can be curable with the correct diagnosis and with access to the right testing and treatments. An important goal of this awareness week is to help more undiagnosed patients to be diagnosed.

Each day we will focus on one or more aspects of spinal CSF leak, so check back with us every day on our website or on Facebook or on Twitter.

Just what is a spinal CSF leak anyway?

To understand what a spinal CSF leak is, it is necessary to understand the basic anatomy of the brain, spinal cord and the tough layer called the dura that normally holds the CSF in around the brain and spinal cord.

When there is a hole or tear in the dura, the fluid leaks out, resulting in a loss of CSF volume. The brain needs this fluid to float inside the skull and to function normally. When the fluid level is low, the brain sinks down inside the skull, which causes pain and a number of other symptoms. The loss of CSF volume means a lower fluid pressure inside the head (medical term is intracranial hypotension) which is worsened when upright.

Here is our new video animation called “Upright Headache”, with Anna explaining her experience with a spinal cerebrospinal fluid (CSF) leak

We hope that this video will help people to understand the basic anatomy of how a spinal CSF leak occurs and the hallmark symptom of an “Upright Headache” that is present in most (but not all) patients. We hope that more people suffering with headache that has a postural component (worse when upright and improved lying flat) will speak with their health care providers to discuss whether this could be a spinal CSF leak. Why? Because a hole can often be fixed. There the hope of a cure with the right diagnosis and with access to the right testing and the right treatments. Too many patients endure years or even decades without the correct diagnosis or treatment. We hope that more patients can achieve an improved quality of life, even when a cure remains elusive.

Please review the Rare Disease Database Report on Spontaneous Intracranial Hypotension published just last month by the National Organization of Rare Disorders (NORD) with our help. Intracranial hypotension refers to the loss of CSF volume in the head and is due to spinal CSF leak, so these terms are often used interchangeably. It is a very understandable report on covering the spontaneously occurring type. Spinal CSF leak may also arise as a result of a medical procedure or as a result of trauma.

This Overview document provides a thumbnail sketch of spinal CSF leak.

Visit our facebook page this evening to see photos of landmarks and buildings that will be lit up in purple in honor of #leakweek tonight:
Rundel Memorial Building – Rochester, NY
Building Owners and Managers Association (BOMA) of Chicago
Check our full list of locations that will shine purple during the week.

Be sure to save time in your schedule this week for all three of our Expert Q & A sessions LIVE on our facebook page.