Transcription of slides from the Ehler-Danlos Society:
Slide 1: What is cerebrospinal fluid?
The central nervous system includes the brain and spinal cord, which act as the body's control center.
These structures are surrounded by cerebrospinal fluid (CSF), which cushions and protects the brain and spinal cord from injury.
[diagram of the central nervous system with brain, ventricles, cerebrospinal fluid and spinal cord labeled]
Slide 2: What are CSF leaks?
A CSF leak happens when CSF leaks out through a tear in the dura, the outer lining that surrounds the brain and spinal cord.
There are two main types of CSF leaks:
Occur anywhere along the spine
CSF leaks may happen after medical procedures, injury, or without an identifiable cause.
Slide 3: CSF leaks in EDS
The Ehlers-Danlos syndromes affect connective tissue, which provides structure and support throughout the body.
In some people, this can make the dura more fragile and more prone to CSF leaks.
Chiari malformation type I may also occur in people with hypermobile EDS and may be associated with CSF leaks in some cases.
[diagram of Chiari malformation type I]
Slide 4: Symptoms of cranial CSF leaks
Cranial CSF leak symptoms may include:
Clear, watery drainage from one side of the nose or ear
A salty or metallic taste in the mouth
Changes in behavior or ability to think clearly
[image of a head in profile with red dots on nose, mouth, ear, and brain]
Slide 5: Symptoms of spinal CSF leaks
The most common symptom of a spinal CSF leak is an orthostatic headache.
Orthostatic headaches are headaches that worsen when standing or sitting up and improve when lying down. They typically affect the back of the head and may also be triggered or worsened by coughing or straining.
Other symptoms of spinal CSF leaks may include:
Dizziness, nausea, or vomiting
Sensitivity to light or sound
Changes in behavior or ability to think clearly
Slide 6: Intracranial hypotension
CSF leaks can lead to low pressure inside the skull, known as intracranial hypotension.
This change in pressure is one of the reasons people experience orthostatic headaches and other symptoms.
[image of brain with a deflated shape labeled: Cerebrospinal fluid
Low pressure can cause the brain to sag]
[image of deflated balloon labeled: Deflated Balloon
Lost 'cushion' due to CSF leak]
Slide 7: Diagnosing a CSF leak
Healthcare professionals may use a range of tests to help diagnose a CSF leak, depending on the symptoms and suspected location.
Beta-2-transferrin testing of fluid leaking from the ear or nose
Spinal tap, also known as lumbar puncture
Computed tomographic (CT) myelography
Magnetic resonance imaging (MRI)
In some cases, additional imaging techniques may be used to find the source of the leak.
Slide 8: Managing a CSF leak
Management depends on the type and location of the leak, as well as the underlying cause.
Conservative approaches may include bed rest, increased fluid intake, and caffeine, which may help relieve symptoms in some cases.
If these approaches are not effective, other options may be considered, such as:
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