Leak Week UK 2018: Day Three

CSF Leak Diagnosis & Imaging

We’ve published a brand new factsheet. It’s a Quick Reference Guide to Imaging Techniques for Spinal CSF Leaks.

Rare Disease Day 2018

Rare Disease Day & Leek Week UK

Leak Week UK coincides with Rare Disease Day. The CSF Leak Association is proud to work in partnership with other third-sector organisations and groups to support those with rare diseases and secure improvements in care and treatment. That’s why we’re a member of the Scottish Parliament’s Cross-Party Group on Rare, Genetics & Undiagnosed Conditions.

You can find out about other Rare Diseases at the Rare Disease Day website: www.rarediseaseday.org

CSF Leaker Profile: Robin Palmer Hosking

Click here to read about Robin’s experiences of a life with spinal CSF leak.

CSF Leaker Short Video: Polly Walker

It’s Polly Walker’s turn today to talk about her Life with a CSF Leak.

https://www.youtube.com/watch?v=uoMhoNbcA5c

Update: Since producing the video of my leaker story for Leak Week back in 2018, very little has changed in terms of my CSF leak. If anything, my symptoms have lessened over the last few years, although my scans continue to tell us that I am still well and truly leaking. I have still had no interventions since the onset of my leak in 2015, but continue to be monitored by Dr. Ellis via an annual brain and spine MRI scan. The last, carried out in July 2020, clearly showed a collection of leaked fluid from C2 to T12, covering the same area as previous scans. I will be due for another scan in the coming months. I continue to be able to be upright throughout the day and maintain a 'normal' routine in terms of work, parenting, socialising etc. During the first lock down I began to introduce some more exercise into my life - very gently and slowly, and being constantly alert to any changes or worsening of my symptoms. To say that I have been absolutely overjoyed to be moving a bit more is not an understatement, and I am eternally grateful to be able to take some positive steps again to maintaining my overall health. I am also mindful of times when my symptoms are usually worse (during ovulation and menstruation, when ill, and under periods of heightened stress or extreme tiredness). It is rare that a day goes by when I don't ponder whether 'today is the day that my leak declares it's presence once more'.... and there are certainly times when I wonder what the future holds and whether I have made the right decisions in terms of allowing my leak to go on untreated for so long and whether I will eventually see other related conditions develop as a result, however I feel well supported by Dr Ellis and am encouraged by the slow but steady developments that are constantly taking place in terms of identifying and treating CSF leaks, particularly in the UK.

Bite-sized Facts

Each day during Leak Week, we publish some bite-sized facts. Here are today’s facts: