Bengaluru: For nearly 10 years, a man in his late 30s from Chennai lived with relentless headaches, repeatedly misdiagnosed as migraines. The pain had a peculiar pattern — it disappeared when he lay down and worsened when he stood up — a classic red flag that went unnoticed for over a decade.It was only after he was hospitalised that doctors finally ordered detailed imaging. An MRI and dynamic myelogram revealed the real cause: a cerebrospinal fluid (CSF) leak. By then, the condition had become chronic, requiring surgery. Following treatment, his long-standing pain finally disappeared. Doctors say his story is far from unique. Such misdiagnoses are common among patients with CSF leaks, a rare but debilitating condition often mistaken for migraines or sinusitis. “The brain and spinal cord float in a fluid called cerebrospinal fluid (CSF), which provides support and buoyancy — similar to how a ball floats in water. This fluid is contained within a tough, protective covering called the dura. In some cases, the dura develops a hole, causing CSF to leak out. When the loss of fluid exceeds the body’s ability to produce it, the brain loses its cushioning and begins to sink,” explained Dr Sharath Kumar GG, consultant in radiology and interventional neuroradiology at Manipal Hospital, Kanakapura Road, who treated the patient. Though considered rare — affecting 5 to 10 people per lakh population — experts say the condition is significantly underdiagnosed. “In a city like Bengaluru, we may see around 500 cases a year, but most go undiagnosed because of a lack of awareness,” Dr Kumar added.One of the biggest challenges is that the symptoms closely resemble more common conditions. “Clinically, the presentation can be confusing. Many of these patients are treated for migraine for a long time. Migraine is a very common condition, and patients may already have a pre-existing migraine. On top of that, they develop this condition. When the headache worsens, it can trigger a migraine, making it more difficult to differentiate and diagnose,” said Dr Rakshith Srinivasa, consultant in neurosurgery at Ramaiah Memorial Hospital.He stressed the importance of recognising a key symptom pattern: “A high level of suspicion is very important for diagnosis. If a patient presents with a headache that worsens on standing and improves on lying down, we should suspect spontaneous intracranial hypotension.”“To diagnose this condition, we need to ask specific questions about when the headache worsens or improves, as patients often only describe its positional nature when prompted. A history of postural headache is followed by an MRI scan, which typically shows characteristic findings such as brain sagging due to fluid loss. However, many cases are missed because imaging is incomplete or not done at the right time — often only the brain is scanned, even though the leak is usually in the spine,” Dr Kumar explained. BOXHow does it happen?Doctors say CSF leaks can occur because of medical procedures, trauma, or even spontaneously. “The most common causes of spinal CSF leaks include iatrogenic factors, such as those occurring after spinal anaesthesia or spinal surgery, and traumatic causes following major spinal injury. They can also occur spontaneously, particularly in individuals with connective tissue disorders or congenital neural tube defects, with the most common age of presentation being between 30 and 50,” said Dr SR Patil, consultant brain and spine surgeon at Hosmat Hospitals.With symptoms often overlooked, specialists warn patients not to ignore persistent warning signs such as recurrent, unresponsive headaches, fever, neck pain, altered sensorium or spinal wound watery leaks.
