Richard's Journey with Cranial CSF Leaks: A Story of Resilience and Hope

My name is Richard Taylor, and for most of my life, I was the person who couldn't sit still. Active, sporty, always on the move - that was me. I thrived on being outdoors, pushing my body, living fully. Then, around 2005, everything changed in the most peculiar way. 

It started with something so seemingly insignificant: a slight tilt of my head forward would trigger a stream of fluid from my left nostril. Clear. Constant. Unstoppable. What began as a curiosity quickly became my daily reality, and with it came a creeping sense of shame. I found myself pulling back from the activities I loved, worried about what people would see, what they would think. The tissues became my constant companionthat were hidden in pockets, clutched in hands, a quiet testimony to something I couldn't explain and didn'tunderstand. 

At home, with my young family, I worked hard to conceal what was happening. I didn't want to worry them. I didn't want them to see their father this way. But it was more than that, I was struggling to accept this change in my own body. Without a diagnosis, without answers, I felt foolish.  

When the leak first appeared, I did what anyone would do… I waited for it to stop. After all, runny noses go away, don't they? A week or two, perhaps. 

But mine didn't stop. Not after two weeks. Not after two months. 18 to 24 months passed, each day marked by the same embarrassing discharge. I visited my GP repeatedly, only to be told nothing was wrong. The frustration built until I reached my breaking point. 

I demanded an appointment with the ENT department (Medway Maritime Hospital). When I arrived, they were still dismissive, until I took matters into my own hands. I asked for a specimen pot, leaned my head forward, and let them watch as crystal-clear fluid poured from my nose, filling the container in moments. 

The shock on their faces told me everything. This wasn't normal. This wasn't nothing. 

Within days, I had an urgent referral to Guy's Hospital. There, an ENT specialist threaded an endoscope through my nose, the tiny camera revealing what had been hidden all along: a serious leak of cerebrospinal fluid at the base of my skull. 

Before my first operation, I was invited to appear on the BBC's City Hospital programme. Sitting across from presenter Matt Baker, I listened as Dr. Roberts described my condition as "very complicated and unusual." When Matt asked what would happen if I didn't have the surgery, the doctor's answer was: "He would very likely contract Meningitis." 

What followed was not a single battle, but a war fought across years. Here is how it unfolded: 

2005 – The leak began. Months of searching for answers yielded nothing. 

2006 – Finally, a diagnosis - Cranial CSF Leak. My journey through the medical system had truly begun. 

2007 – My first operation at Guy's Hospital. The surgery was successful, and the leak stopped, but there was a cost. I lost my sense of smell entirely, a loss that remains with me today. 

2010 – In the middle of an ordinary night, I collapsed. Vomiting, unconscious, my wife's quick thinking saved my life as paramedics rushed me to hospital Medway Maritime Hospital. At our local facility, doctors delivered devastating news to my wife: there was nothing more they could do. 

I was placed in an induced coma and transferred by emergency transport to Kings College Hospital's Intensive Care Unit. There, the diagnosis came, this time - Meningococcal Meningitis. Surgeons drilled into my skull to insert a drain for the excess CSF fluid. My family gathered to say goodbye before the doctors attempted to wake me. 

Three days later, I opened my eyes. The medical team told me plainly that if I had arrived thirty minutes later, I wouldn't have survived. 

The solution was a head shunt; a tube surgically placed from my skull down through my body to drain CSF fluid as it naturally should. Within two weeks, the shunt failed. I had to undergo the entire procedure again. Mercifully, the second attempt succeeded. 

2013 – I went to work feeling fine. Within hours, I was sent home feeling unwell. Thirty minutes later, I was unconscious at home. Once again, my wife's vigilance saved my life and got me back to Medway Maritime Hospital. 

This time, it was Pneumococcal Meningitis, a second brush with the same deadly infection. My temperature soared so high I went into severe seizures. Another induced coma. Another stay in intensive care. Another round of family goodbyes. But somehow, through sheer will and excellent medical care, I survived again. 

The cause was a new CSF leak. I returned to Guy's Hospital for a second repair operation, where the surgeon took extra care to seal the leak as thoroughly as possible. 

2020 – Severe headaches sent me back to Medway Maritime Hospital. Scans revealed my head shunt had become blocked. I underwent surgery at Kings College Hospital for a replacement shunt.  

I still did not give up and was back at work at the Maidstone Hospital within two and a half weeks, and was soon pushing trollies of PPE around the hospital as Covid had landed. 

After surviving two bouts of Meningitis, multiple surgeries, and coming face-to-face with death more than once, I decided I would give back. 

In 2015, two years after my final CSF leak operation, I began working for the Maidstone & Tunbridge Wells NHS hospital. It felt right, working within the very system that had saved my life. After six years, I moved to NHS England, where I now work in the Commercial department. 

I was never the brightest student in school. I worked hard, yes, but academic success didn't come easily. Yet after everything I'd been through, I refused to stop developing. In 2016, I earned my first degree (Computing). Still hungry to learn, I pursued an MBA in Business Management, with the support of the NHS, graduating in 2021, even as I underwent my replacement head shunt surgery during the course. 

If my story proves anything, I hope it's this: never give up. Even when life brings you to your knees, even when the odds seem insurmountable, there is always a chance to achieve the things you've dreamed of. 

Today, I consider myself extraordinarily fortunate. Yes, the road to diagnosis was long and fraught with misunderstanding. Yes, the shunts have failed and needed replacement. But I'm alive, and I'm living the life I choose. 

I may not be able to do everything I could before my first leak, but I work, I play golf weekly, and I recently spent three glorious weeks in Bali with my family - complete with an unforgettable encounter with an elephant. 

Still, ‘worry’ is my companion. Every cold, every runny nose, every headache carries the weight of "what if?" I know the expected lifespan of a head shunt is ten to fifteen years. My replacement is now six years old. The possibility of future surgery lingers in the back of my mind. 

But I've learned to live one day at a time. It's not always easy, but it's enough. 

Today, I'm proud to be a trustee of the CSF Leak Association. After years of struggling in the dark, of being dismissed and misunderstood, I want to help others find answers more quickly. I want to spread awareness of CSF leaks, not just to patients and their families, but to doctors and hospital staff who may not recognise the signs. 

Knowledge saves lives. Early diagnosis saves lives. If my story can contribute to that mission, then perhaps all the pain had a purpose.