I always knew there was something inherently wrong with my body, but I didn’t know what it was. Nobody randomly has their body up and quit on them in various ways for no reason. For me, it was things in my childhood – learning to walk late in the game, a visit from the district nurse that resulted in a trip to the local hospital after me falling over when she sat me up, but they didn’t find anything wrong. It was going through problems at school, an inability to concentrate, periods of time where I would become unresponsive – I’d hear the teacher talking, but I’d be miles away. That would incite a pretty angry response from the teacher and my desk would be ceremoniously shoved in the corridor where I’d remain for the rest of the day. It was early menopause in my twenties, a constant feeling of fatigue, brain fog and constantly catching up with everybody else.
Last October I started to get dizzy and sensitive to light. I went through the Irish healthcare system and just got diagnosed with vestibular migraine. But it was constant, and I instinctively knew this was just the cusp of a cumulative collection of symptoms over a long period of time. I came across Queens Neuro in London online, and am thankful I got an appointment within two weeks. My MRI unfortunately did not look normal, with mild hydrocephalus, narrowed vessels, a squidged (yes, that’s a medical term) pituitary gland and aqueductal stenosis – born with this.
So, I was advised to have Intracranial Pressure Monitoring, and given what was on my scans, I agreed to do it. I unfortunately have PTSD from a previous medical procedure, but I was put at ease and on the day of the procedure I really had minimal anxiety and walked into theatre feeling no anxiety at all. To explain ICP Monitoring, you have to have a small hole drilled into your skull and a catheter placed in your head that has a monitor attached the other end. This measures the intracranial pressure in your head. It sounds horrific, but it was absolutely fine. Here’s a pic of me with my alien antennae 🙂 It’s a no-makeup, no filter photo. Funnily enough I have the confidence to post those now!
The results – the pressure in my brain is too high. My scans show the ventricles in my brain are also too big – I have hydrocephalus. I have very likely had this since I was born, but my body compensated. What can happen, and has happened to me, is as an adult your body just gets fed up trying to compensate and “decompensates”.
I am due to have VP Shunt put in on the 20th of June. It’s a brain surgery of sorts. I’m not sure why they call it a shunt, to me it sounds like you’re being rear-ended by a car 😀 My shunt shall be called Sigourney! So Sigourney the Shunt hopefully will help drain the excess fluid that my brain is unable to drain itself, on a continual basis. That’s the hope. Sig may malfunction, she may get blocked. Sig can have her fluid drainage rate adjusted without the need for further surgery, with a magnet – so she’s pretty cool on that front. She’s also gravitational, so she’ll adjust when I lie down and stand up. She’s a cool bird in my book!
I feel hopeful for the future right now, even tho I’m facing some gnarly surgery, and an interesting new hair-do. The surgery may not work, Sig may have problems in the future, but when you’re faced with difficulties in life, you have to stare them down and absolutely stay positive. I prepare for the worst, but I also hope for the best too 🙂