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.

The fight for Pam

Wednesday 21st June 2023 was one of the hottest days of the year. We sat in a daze, the sun bright in our tear worn eyes outside the hospital wondering, again, what was in store for us Learn more

Keeley Burney

I’d been unwell for 10 years with flares of ill health; experiencing awful headaches... Seven years ago, I was diagnosed with fibromyalgia. Two years ago, I became unwell but knew there was something wrong... Learn more

Bernadette Hard

I encountered a stressful event that threatened key aspects of my life, I felt like my head would explode but I never in a million years believed that it literally would do exactly that. Learn more

Angela Heeley

Angela's story isn't the usual CSF Leak journey... Learn more

Sandie Moore

The Volunteers are a really fun and dedicated band of people from all different walks of life - we are so lucky to have them gunning for us. Learn more

John Jackson

Hi, my name’s John, and for the past five years I have been a leaker…. Learn more

Gabrielle Brandon

A previous neurologist had dismissed my problem as an ‘EDS thing’... Learn more

Rhys Holmes

Mine is a slightly different cranial CSF leak story Learn more

Carolina Iten

I was a very active, healthy, and independent person. I enjoyed my role as a mother taking care of my first child and waiting for my second one. Learn more

Russell Secker

Until my mid-fifties, I had been strong, fit and healthy. I had run nearly 200 marathons... But then things started very slowly - almost imperceptibly - to go wrong with my health. Learn more

Kirsty Bonfield

Life 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 Goodship

At only four and a half years old, Cameron was diagnosed with papilledema after his optician identified swelling behind his eyes... Learn more

Polly Walker

Listen to Polly talk about her life with a CSF leak. Learn more

Rachel Antcliffe

It was only then that I started to notice deficits and changes in the way that my memory worked... Learn more

Donia Wheelan

My CSF Leak journey started April 2016, when I was 17 weeks pregnant. Learn more

Suzanne Morgan

I'm scared of the future, I'm scared of being this way forever... Learn more

Rachael Ebeling

Progress, no matter how small is positive. Stay strong and keep the faith... Learn more

Sarah Hollands

As the weeks went by I couldn’t look after my son… Learn more

Lisa Jamieson

The weight of my brain was collapsing down on itself under the force of gravity when I was upright… Learn more

Deborah Lunnon

During the investigations it was found I had a connective tissue disorder called Ehlers-Danlos Syndrome, Hypermobility Type with chronic pain. They also found Tarlov cysts in my sacrum. Learn more

Robin Palmer Hosking

I spontaneously developed even more symptoms, including ‘end of days’ head pain…. Learn more

Jenni Pettican

Listen to Jenni talk about her life with a CSF leak. Learn more

Ingrid Snydal

Never 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 Baldwin

Listen to David talk to the BBC about life with a CSF leak. Learn more

Chris Plant

I believed I would get better and I have, and I’m stronger because of what happened to me... Learn more

Leah Smith

Listen to Leah talk about her life with a CSF leak. Learn more

Robert Edwards

For me it all began at the end of 2016, quite probably with just a big sneeze! Learn more

Pete Marnick

My leaker journey started in 2009 after two road traffic accidents within the space of two years.... Learn more

John Brennan

My 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 Trevarthen

I 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 Moore

That fateful day, in November 2013, I was sitting at my desk and there was this drip. And another. Learn more

Claire Comley

Doctors 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.

Get Involved

You can support the mission of the CSF Leak Association in many different ways. If you want to help you can find out how by following the links and deciding which method fits you best. We appreciate any help you are able to give..

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