Symptoms
Symptoms of a spinal CSF leak: From common to rare
Cerebrospinal fluid (CSF) bathes and supports the brain and spinal cord. When the dura mater (a connective tissue that holds CSF in around the spinal cord) has a tear, the result is a loss of CSF volume, known as intracranial hypotension. This causes a loss of buoyancy of the brain that is worse when upright. Distension of intracranial veins and traction on pain-sensitive structures in the head are thought to be causes of the head pain that is usually worse with upright posture—one of the most common symptoms of spinal CSF leak.
The most common and classic symptom suggestive of a spinal CSF leak is head pain that is positional, such as a headache that is worse when upright and improved when positioned horizontally. This is also sometimes referred to as an orthostatic headache, as orthostatic means “relating to or caused by an upright posture.” It is not unusual for this head pain to become less positional over time, or for the positional aspect to resolve entirely. Occasionally, the head pain is never positional at all, and very rarely people can experience a reverse pattern, with a worse headache while recumbent. Note that not all patients with positional head pain have a spinal CSF leak and not all headaches related to spinal CSF leaks are positional.
The head pain is often located at the back of the head but can be frontal, bitemporal (both sides of the head), or all over the head. Head pain severity varies enormously, from mild to severe, and may not correlate well with findings on imaging. Many people affected by spinal CSF leak are quite disabled by their inability to be functional while upright.
Although head pain is the most common symptom, not every person with spinal CSF leak will experience it. And in fact there are a number of non-headache signs and symptoms. Recognizing the headache pattern and other symptoms is important in leading physicians to suspect the diagnosis of intracranial hypotension secondary to a spinal CSF leak.