Cerebrospinal fluid (CSF) 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 or tear, this results in a CSF Leak.
When a CSF leak occurs, it reduces the fluid volume and pressure drops, a condition known as intracranial hypotension. When this occurs, the brain can sag, causing a headache that worsens when the body is in an upright position.
While there are a number of symptoms, the most common symptom is an “upright headache”, that is, a headache that is worse after minutes to hours upright, improved lying flat, or a headache 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. In some cases, this can be life-threatening.
Spinal CSF leak 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.
A CSF leak can often, but not always, be fixed. With the right diagnosis and access to the right testing and treatments, more patients will have an improved quality of life.
One study at Cedars-Sinai estimated that new spontaneous cases occur each year in at least 5 per 100,000 people. However, this sort of study tends to underestimate how often these cases occur, because it includes only a more severely affected group of patients.
Some patients have symptoms that resolve spontaneously in a matter of hours, days or weeks without ever seeking or requiring medical care. Basic treatment for CSF Leaks includes horizontal bedrest, nausea & pain management. For more severe cases, a substantial percentage of patients respond favorably to one or more epidural blood patch procedures and surgical procedures.
The Tyrrell Foundation was founded in 2017 through the DuPage Foundation by the family of Colleen Tyrrell Llacsa, a mom of 3 from Naperville, IL who had been suffering the debilitating effects of a cerebrospinal fluid (CSF) leak. The Foundation’s kickoff event in 2017 raised money to support Colleen and her family, as well as bring awareness to spinal CSF leaks. Out of the darkness and suffering, the Tyrrell Foundation was formed and decided to shine a light on this condition for all those who suffer. Today, in partnership with the DuPage Foundation, all funds raised through the Tyrrell Foundation go directly to spinal CSF leak education and research.
Our Mission is to tell Colleen's story in order to raise awareness and funding for critical research which will advance treatment options for spinal CSF leak patients.
Our Vision is to support the medical community in finding a cure for this complex, under reported and often misunderstood condition so that no one will have to suffer the devastating symptoms like Colleen experienced.
A cerebrospinal fluid (CSF) leak occurs when there is a tear or hole in the membranes surrounding the brain or spinal cord, allowing the clear fluid that surrounds and cushions those organs to escape. A spinal CSF leak can have devastating effects on people in many ways, ultimately leaving some unable to work or care for themselves & others. Our mission is to help end the suffering of people with spinal CSF leaks by raising awareness and supporting research for this rare disorder. If you’d like to help the cause, please donate through the DuPage Foundation by selecting Tyrrell Foundation in the drop down menu.
Disclaimer: As a donor-advised fund of the our aim is to raise awareness and fund research efforts for spinal CSF leaks. We do not claim medical expertise or professional diagnosis.