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Frequently Asked Questions (FAQs)

Cerebrospinal fluid (CSF) leaks are a rare but potentially serious medical condition that can have significant impacts on a person's health and quality of life. These frequently asked questions aim to provide clear, concise information about the risks, duration, and potential consequences of CSF leaks. While the information provided here is general in nature, it's important to consult with a medical professional for personalised advice if you suspect you may have a CSF leak.

How long can a CSF leak go untreated?

While spinal CSF leaks may heal on their own within days or weeks with conservative measures, it's not recommended to leave a CSF leak untreated for more than two weeks. Conservative measures include bed rest and oral hydration (2-2.5 litres per day). Caffeinated drinks may help some patients. Prolonged leaks increase the risks of developing complications including those relating to being bedbound or housebound, e.g. deconditioning, deep vein thrombosis (blood clots), and those directly related to having a leak, e.g. subdural haematomas, cerebral venous thrombosis and superficial siderosis. Seek medical attention as soon as a CSF leak is suspected as the best outcomes are from early treatment. In the meantime, you should avoid heavy lifting and straining.

Cranial leaks, where the CSF escapes the body via the ear or nose, carry with them an increased risk of contracting meningitis that can only be mitigated by repairing the defect allowing the CSF to escape.

Is a CSF leak dangerous?

Yes, CSF leaks can be dangerous if left untreated and the leak is especially fast or large; however, the body replenishes CSF constantly and in the vast majority of leaks the volume loss is not enough to be considered life-threatening. Spinal CSF leaks can cause intracranial hypotension leading to severe headaches, hearing disturbances, balance problems, nausea, vomiting, and cognitive issues ranging from mild to severe dementia-like symptoms. Serious complications can occur in some patients with intracranial hypotension including subdural haematoma, cerebral venous thrombosis, superficial siderosis and bibrachial amyotrophy. Cranial leaks can increase the risk of meningitis. Prompt medical attention is necessary to prevent serious complications. Overall, the prognosis is good with appropriate diagnostic testing and early treatment.

Can a CSF leak cause permanent damage?

Yes, untreated CSF leaks can potentially cause permanent damage although for most patients who receive prompt diagnosis and early successful treatment the majority of the symptoms are reversible. Living with a spinal leak for a long time increases the likelihood of developing complications, e.g., subdural haematoma, cerebral venous thrombosis, superficial siderosis, bibrachial amyotrophy, spinal cord herniation. These complications may result in permanent damage and disability. Patients who lived with a leak for some time before successful closure may continue to struggle with some of the following: chronic headaches, cognitive impairments, balance problems, and in some cases, nerve damage. Living with a cranial leak for a long time increases the risk of developing meningitis which can result in permanent damage. Prompt treatment reduces the risk of permanent consequences.

Can you die from a CSF leak?

While death from a CSF leak is extremely rare, it can occur in severe cases, usually due to complications such as brain herniation. The vast majority of CSF leaks do not involve rapid loss of high volumes of CSF that would lead to brain herniation and although the body will continue to produce CSF constantly it may not be able to produce enough. The lost volume will result in intracranial hypotension and associated postural symptoms including severe headaches which can be very debilitating and disabling. The main life-threatening risk of a cranial leak is meningitis which may be fatal if not treated promptly.

How common is a CSF leak?

Spontaneous CSF leaks are relatively rare, occurring in about 5 per 100,000 people annually. They're more common as a complication of certain medical procedures involving accidental puncture of the dura or head trauma. The risk of developing a post dural puncture headache (PDPH) from a procedure involving an epidural or spinal injection is between 1 in 100 to 1 in 500 procedures.

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