Hello lovely people!
Some of you may know that back in March I suffered from a spinal fluid leak. It is believed that it was as a result of a particularly hard-core sports massage, during which, something in my neck was ruptured and I started to leak Cerebrospinal Fluid (CSF).
CSF protects our brains by keeping them in a cushioned or buoyant state. A leak can occur as a result of a trauma – in some cases something as seemingly trivial as a golf swing, a violent cough or a sneeze, a twist or a stretch, – or as a result of surgery or an epidural or spinal tap. They can also occur spontaneously.
The result of this ‘leak’ was that my brain was no longer supported and was displaced – basically my brain ‘sagged’ to where it shouldn’t be sitting. Paul and I joked about me having a ‘saggy brain’ but humour aside, it’s been a pretty turbulent few months. This condition can cause all sorts of neurological symptoms, the main one being the most SEVERE AND HORRENDOUS AND DEBILITATING HEADACHE THAT IS ONLY RELIEVED BY LYING DOWN. (In capitals because this is the major defining symptom of this condition – spreading awareness and all that!).
Yes, ok, some of us would give anything for a lie down for an extended period, but I wouldn’t wish this on anyone. Really. I have given birth, naturally, twice, and I can honestly say that was relaxing in comparison to a low CSF pressure headache. After all, my brain was basically bumping against the top of my spine and stretching all the nerves around it at the same time. To top it off, other symptoms can include:
Nausea; Vomiting; Dizziness; Double Vision / blurry vision and pain behind / in eyes; Neck and Back Pain; Tinnitus and pressure in the ears / hearing loss; Sinus pressure; Facial numbness; Cognitive decline.
Pretty sh*t really when you have to function – you have a life to lead, responsibilities, a job to do, children to look after… and you can’t get out of bed. It’s not necessarily a life threatening condition (but it can be) and not necessarily a lifelong condition (but it can be), but it’s very much under diagnosed. I was repeatedly told that I had a sinus infection, a migraine, a tension headache: ‘Mrs Walker, why don’t you go for a run to relax?’…’Eeerrrrm, because I’m currently crawling to the toilet because the pain in my head is so severe when I stand up’…. etc. I’ve always broadcasted my support for the NHS, and I stand by that. But this condition is rare and it needs to be known about so that it can be recognised and treated quickly and appropriately!
While I’m being so honest, I’ll tell you that this experience has shaken me to the core. BUT, I seem to have been one of the lucky ones. My ‘leak’ appears to have healed itself. I’ve been left with some lingering symptoms which I’m waiting for a further brain MRI to suss out and also a deep, nagging anxiety that ‘THAT headache might come back’. I’ve cancelled numerous commitments over the last few months, I didn’t work for weeks and I was a crap Mummy, I’ve let people down, I haven’t been great to be around, I’ve stopped running and my life has slowed down considerably – those who know how busy and active I was previously will pay testament to that. However, I seem to be one of the lucky ones. For some people and for different reasons, these leaks don’t heal spontaneously, and ongoing and increasing invasive surgical procedures are needed. And because this condition is rare, appropriate treatment often isn’t available in the UK and many – too many – need to travel to the States to receive the treatment they need at HUGE cost.
If you’d like to know more or to donate to the CSF Leak charity that is in the process of being launched to raise awareness and funds to support those suffering, the link is:
This charity is in the process of being set up by a couple from Scotland – Cerian and David – and others, for a very good reason.
David is like us – a young, active guy, living life to the full. Until his CSF Leak struck whilst kayaking in the Scottish highlands. After 2 years of this nightmare agony, David is currently in the States receiving treatment from a CSF Leak specialist. David has been through two major spinal operations over the last month, yet his and Cerian’s strength and positivity is unrelenting.
So. I’m writing this blog to raise awareness of this horrible, debilitating condition, but also to highlight David and Cerian’s on-going journey to find a resolution and to return to the normality that so many of us take for granted. I always thought I was grateful for my health, for my fortunate life. And then my CSF leak struck and I realised how much I really did take for granted.
Here’s some reading about CSF Leaks in the media:
And here’s the link to David and Cerian’s page if you’d like to follow their story:
And finally, an interesting clip about CSF Leaks:
Thank you again for reading. I promise a more cheery blog next time!