CSF Leak FAQs: Essential Information About Cerebrospinal Fluid Leaks

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.

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.

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.

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.

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.

If you experience a sudden and severe headache otherwise known as a ‘thunderclap’ headache, whether it worsens when standing or sitting up or not, you should seek immediate medical attention. A cerebrospinal fluid (CSF) leak is an emergency if your symptoms so severe that you cannot care for yourself and you have nobody to assist you with e.g., personal hygiene, meal preparation and cooking, eating, taking prescribed medication. If you have a CSF leak caused by a medical procedure you should seek advice from the doctor who oversaw your care immediately. If you notice clear fluid draining from your nose or ears, especially after a head injury you should seek immediate medical attention.

If you have a known CSF leak with stable symptoms and you develop any of the following you should seek immediate medical attention:

1. Stroke-like symptoms including new onset numbness, weakness or paralysis, difficulty speaking or understanding speech and balance issues.
2. Meningitis symptoms including fever, light sensitivity, rash or neck stiffness.
3. Visual or auditory changes
4. Confusion or altered mental state
5. Seizures especially if there is no history of epilepsy

Remember, even if your CSF leak symptoms do not meet the criteria above, it's crucial to have any suspected leak evaluated by a healthcare professional to confirm the diagnosis and offer a treatment plan.

Yes, it is possible for the symptoms of a spinal cerebrospinal fluid (CSF) leak to be intermittent or come and go. This may indicate a tear in the dura healing over and reopening or alternatively, it may indicate one tear healing and another tear opening at a later date. There is evidence that even when a leak has been present for some time that the symptoms such as positional headaches—worse when upright and improved when lying down—can fluctuate over time, and the positional aspect may even resolve entirely in some cases. For patients who also have idiopathic intracranial hypertension (IIH) the course of symptoms can also be variable. It is also possible for the symptoms of a cranial leak to be intermittent, where symptoms may only appear with changes in posture or other conditions that affect intracranial pressure. Therefore, while CSF leaks are often continuous until treated definitively, their symptoms and presentation can vary significantly depending on the location of the leak, underlying causes, and individual factors.

Yes, unfortunately a cerebrospinal fluid (CSF) leak can persist for years in some cases, especially if left untreated or if the underlying cause is not properly addressed. While many CSF leaks may heal on their own within days or weeks with conservative measures, some can become chronic and long-lasting. Due to the challenges of correctly diagnosing a CSF leak some people live for years with a leak before being correctly diagnosed. For some types of spinal CSF leaks involving a ventral collection of escaped CSF, living with the condition for a long time increases the likelihood of developing complications and potentially permanent damage see 'How long can a CSF leak go untreated?' above.

In the case of patients with longstanding leaks who have undergone multiple failed treatment attempts, a small minority of them will experience no relief and have persistent symptoms whilst some will experience partial benefit and have less symptoms and/or less severe symptoms. Further research is needed to fully understand why this happens but if you have only recently been diagnosed with a CSF leak and your symptoms have been longstanding there is still cause for hope as every case is individual.