Running for Cerebrospinal Fluid Leak Association

My story:

On Thursday the 7th March 2024, my parents received a letter telling us that I had tested positive for a CSF leak. 5 Months prior to this letter, I had been experiencing headaches that got better lying down, a burning metallic taste and smell and the clear fluid leaking from my left nostril. At the bottom of the letter it said that I should avoid all contact sports until we hear more from the doctors and scans.

I got referred to hospital shortly after we received the letter to have an Endoscopic sinus camera to locate the source of the leak. Unfortunately, this was pointless and the results showed nothing. The fact they were unable to locate the source of the leak was a very scary thing to accept. However, 2 days after this I underwent a CT scan.

2 Weeks following on from the scan, we get referred to a small hospital located just outside our residency to look over the results. After speaking with the neurosurgeon, he said on the scans there are no obvious signs of a CSF leak on the images. (They couldn't locate the source neither) We were very discouraged and worried as a week after this I experienced another leak which ultimately told us that the possibility of surgery was that much more certain.

After this conference, the neurosurgeon sent the scans to the Skull base team in the John Radcliff hospital where we were quick to get a response. During this time I had the flu and after the flu, I didn't experience any other symptoms of a CSF leak. The smell dissipated, the leak stopped and I had no more headaches. We got seen by the head of the Skull base team to which he looked over the scans and said, "I think, after the flu, the bacteria had patched the hole in your skull and healed the leak". He then said that I was able to continue my sports under careful supervision and that if the leak returned, it'd definitely be surgery. I find my self unbelievably lucky to have this result despite how long I left it.

My advice

If I was to give any advice from my experiences, it would be to not doubt your instinct. If you experience symptoms such as a metallic taste or smell, clear fluid leaking from one nostril or a headache that resolves lying down, please get it checked and don't leave it 5 months like I did. Leaving this condition too long runs you the risk of contracting potential lethal brain infections like meningitis.

Who am I fundraising for?

I'm raising money in aid of Cerebrospinal Fluid Leak Association. Thank you in advance for your contribution to this cause.

More information about Cerebrospinal Fluid Leak Association: We are a UK registered charity working to raise the profile and understanding of cerebrospinal fluid (CSF) leaks. We aim to provide support and advice for sufferers, their families and supporters, and a resource for the medical profession.

CSF leaks result in a loss of the fluid that surrounds, cushions and cleanses the brain and spine, resulting in crippling head pain and other neurological symptoms. I will be doing a selection of runs over the coming weeks and months in order to raise the money for this cause. Thank you for your time and contribution. Every donation matters.