my csf leak journey 🩵

icymi:

hi friends! my name is ru and i am a disabled creator and activist. i have a disability called ehlers danlos syndrome as well as a few other debilitating conditions. as a result of my EDS, i have also been living with recurring CSF leaks for the last 7 years.

a CSF leak occurs when there is a tear or hole in the dura which surrounds the spinal cord and brain. it is incredibly painful and often misdiagnosed!

in 2017 i began experiencing incredible pain in my head after being upright for long periods of time. these then eased after lying flat - it wasn’t like any headache i’d ever experienced before. i ended up going to a&e as the pain was getting to an unmanageable level and was told that these were “hormonal migraines”

if it wasn’t for a friend of mine who had previously experienced a CSF leak recognising my symptoms, it would have taken even longer to get diagnosed. i travelled to a different county to see a specialist who diagnosed me and ordered an epidural blood patch (more info on these to come in future posts!). a few months later i had this procedure and immediately felt relief. fast forward 18 months later and i began experiencing symptoms again.

these began during covid and so i ended up having to wait almost a year for treatment, i was bed bound for around 5 months and had to completely put my life on hold. it was devastating to know that it had recurred. i eventually had a blood patch again and once again had relief. for roughly another 18 months.

in 2022 i suffered the worst leak id had so far. i was bed bound for almost a year, stuck in a dark room unable to do anything at all. my mental health suffered so much and my healthcare was completely neglected. after about 8 months of waiting we decided to fundraise to get treatment privately. we managed to raise the full amount which was AMAZING. however the procedure (similar to what id had before) as well as the whole situation left me with severe PTSD.

it’s now been another 18 months later and im experiencing my fourth leak. we’re changing the treatment plan this time as clearly it’s not working. but it’s already been four months and i’m yet to even have a scan. the care for spontaneous CSF leaks is so poor and often leaves people bed bound for months on end alone and isolated.

this is why i decided to launch @isprungaleak to raise awareness around spontaneous leaks and the lacking care and support surrounding them. if you’ve experienced a CSF leak and want to share your story drop us a DM or email isprungaleak@outlook.com 💧🩵

i’ll be creating a bunch on content around this in the upcoming months so if any of you patrons have any questions ill be sure to answer them first 🩵