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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 moreBlood 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.
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