Living with a CSF Leak
In this series of profiles, we asked a range of CSF leak sufferers to talk about their experiences of Life with a CSF Leak. They cover the highs and lows of life with a leak.
John JacksonHi, my name’s John, and for the past five years I have been a leaker…. Learn more
Kirsty BonfieldLife changed with the arrival of our daughter. A perfect little bundle of cute! This was the happiest and hardest day of our lives... Learn more
Cameron GoodshipAt only four and a half years old, Cameron was diagnosed with papilledema after his optician identified swelling behind his eyes... Learn more
Polly WalkerListen to Polly talk about her life with a CSF leak. Learn more
Rachel AntcliffeIt was only then that I started to notice deficits and changes in the way that my memory worked... Learn more
Donia WheelanMy CSF Leak journey started April 2016, when I was 17 weeks pregnant. Learn more
Suzanne MorganI'm scared of the future, I'm scared of being this way forever... Learn more
Rachael EbelingProgress, no matter how small is positive. Stay strong and keep the faith... Learn more
Sarah HollandsAs the weeks went by I couldn’t look after my son… Learn more
Lisa JamiesonThe weight of my brain was collapsing down on itself under the force of gravity when I was upright… Learn more
Deborah LunnonListen to Deborah talk about her life with a CSF leak. Learn more
Robin Palmer HoskingI spontaneously developed even more symptoms, including ‘end of days’ head pain…. Learn more
Jenni PetticanListen to Jenni talk about her life with a CSF leak. Learn more
Ingrid SnydalNever in a million years did I imagine that a person could have a headache for longer than a couple of days, let alone 8 months…and longer! Learn more
David BaldwinListen to David talk to the BBC about life with a CSF leak. Learn more
Chris PlantI believed I would get better and I have, and I’m stronger because of what happened to me... Learn more
Leah SmithListen to Leah talk about her life with a CSF leak. Learn more
Robert EdwardsFor me it all began at the end of 2016, quite probably with just a big sneeze! Learn more
Pete MarnickMy leaker journey started in 2009 after two road traffic accidents within the space of two years.... Learn more
John BrennanMy ordeal began in January 1997 with a routine sinus surgery. It would be July 2015 before it was discovered that a quarter-sized piece of the thin base of the skull above the sinuses had accidentally been removed... Learn more
Tamsin TrevarthenI have suffered with headaches for most of my adult life but in January 2011 I began to get daily headaches which were quite unlike anything I had experienced before... Learn more
Denise MooreThat fateful day, in November 2013, I was sitting at my desk and there was this drip. And another. Learn more
Claire ComleyDoctors have always maintained that my accident had nothing to do with my leak due to the timings, but as I now know that cranial leaks can start with a head injury, I can’t ignore the coincidence... Learn more
Blood Patch Experiences
Epidural blood patches are a common type of medical intervention for cases where a spinal CSF leak hasn’t healed on its own accord.
Many patients worry about the procedure, wondering what the whole experience will be like, what to expect and whether or not it’s painful.
We asked a few CSF leak sufferers to jot down their own experiences of blood patching to help shine some light for those who follow in their footsteps:
• Read about Clare Joy’s experience
• Read about Robin Palmer Hosking’s experience
Family & Friends Experiences
A CSF leak doesn't just have a huge impact on the life of the sufferer, the lives of those around them, from family members to friends, children to work colleagues, can also be greatly affected. Read the stories of those close to a CSF leak patient as they talk about the direct and indirect impacts of the condition on them and how they deal with what can be an extremely challenging situation for them as well.