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Dr Bernadette Hard experienced a sudden and intense headache while attending a medical conference in Malta in 2022, an episode that left her unable to move and confused about the cause of her symptoms. Sitting alone in her hotel room, the 53-year-old from Rudry near Caerphilly felt an alarming sensation in her neck followed by a feeling as if her head was going to explode. She described this moment vividly: “I felt like my head was going to explode then surprisingly it actually did.” This frightening symptom led to her being urgently hospitalized, where she remained for a month and eventually needed advanced surgery to repair a leak in the membrane surrounding her brain and spinal cord.
Initially, Dr Hard’s condition baffled her doctors back home, including her general practitioner who was unfamiliar with her rare diagnosis. Reflecting on the onset of her illness, Dr Hard recounted the strange symptoms she endured: “I felt this jolt in my neck like I had cricked a muscle. Then after five minutes there was this sensation that’s hard to put into words: my whole head felt heavy, it was like a brick inside my head.” Attempts to relieve the pain by lying down were unsuccessful, and by the next day, the pain had escalated to an unbearable level that left her disoriented, sweating, and nauseous. After collapsing in a pharmacy near her hotel, doctors in Valletta ruled out meningitis and brain hemorrhage, eventually suspecting a cerebrospinal fluid (CSF) leak—a rare and serious condition.
CSF leaks occur when there is a small tear or hole in the protective membrane surrounding the brain and spinal cord, causing the fluid to escape and reducing the pressure inside the skull. This drop in pressure leads to a phenomenon called “brain sag,” where the brain literally slumps inside the skull, producing severe headaches and symptoms including blurred vision, neck pain, and hearing issues. Spontaneous CSF leaks affect approximately 3.8 people per 100,000 in the UK, with around 2,500 new cases diagnosed annually. Women between 30 and 40 years old are particularly vulnerable, though awareness of the condition remains low among healthcare professionals. Campaigners warn that misdiagnosis or delayed treatment can lead to serious long-term problems such as brain bleeds, superficial siderosis, or early onset dementia.
After a month in Malta, Dr Hard was stable enough to return to the UK via medical transfer, marking the beginning of a challenging recovery. She encountered further obstacles when her GP was unfamiliar with the condition, and the wait for a neurologist appointment stretched to thirteen weeks. To expedite care, she privately consulted a specialist team at London’s National Hospital for Neurology and Neurosurgery, which identified the precise location of the leak near her spine. The surgery to seal the hole was intricate and risky, requiring a delicate approach through the back to access the site safely. Dr Hard noted, “He (the surgeon) is then looking down an operating microscope and got to find a way either to get some staples or stitches or something into that hole. In my case he managed to get four stitches in.” Despite the difficulties, the operation brought relief, and after ten days her symptoms drastically improved, describing the moment as feeling like “you’ve been hiking for a weekend with a massive rucksack – then you take the rucksack off and you feel you can float.” Now recovered, Dr Hard dedicates her time as a trustee of the CSF Leak Association, campaigning for better recognition of the condition within the NHS. She emphasizes the need for prompt diagnosis through MRI scans and accessible treatments such as blood patches, hoping to simplify referral processes so more patients can receive timely care
Read the full article from The BBC here: Read More
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