Day 7- Living with hydrocephalus

Hi, I’ve decided to do a blog every day for advent (well at least try to). These blogs are going to be about various things, some about mental health but also some about other topics. I haven’t planned them yet, so they may be (most definitely will be) rough around the edges.  Some may contain trigger warnings; I will say this before the start of the post

Day 7-Hydrocephalus

Today I thought I’d write about something that effects me on a daily basis.

I was born with a life-long chronic condition called hydrocephalus. Hydrocephalus translate to, water (hydro) on the brain (cephalus). What it actually is is an excess of cerebral spinal fluid (CSF) between the ventricles of my brain.

When I was a child I was very clumsy, I ended up in A&E a lot. This was down to the fluid on my brain effecting my balance.

Once they found out what was wrong they decided that I’d need an operation.

I had this operation when I was 5 years old.

It involved fitting something called a shunt, this in like a plastic valve system. The shunt consist of a valve and two plastic tubes, on either side. The shorter tube sits in the ventricles of my brain and the other sits somewhere in my bowel. The system works in gravity(not really sure how), it takes the excess fluid from my brain and then moves it to my bowel, and that’s it.

The lifespan of these shunts is normally 5-10 years. I’ve had mine for about 16 years now.

I was in A&E last year for a night as I’m convinced that my shunt isn’t working properly at the moment. But when I went in they said they didn’t know enough about it and that it looked like there might be something wrong but that I could go home.

I’m now waiting for an appointment with someone at a hospital in Bristol.

I’m fairly lucky as a whole with this condition because most people who have it have another condition that is life limiting or they have learning/behavioural issues.

I am lucky as I don’t have any other severe disability with this, and I will not die of this condition, I will just die with it.

Some of the daily symptoms for me however can be hard to deal with. I get bad headaches daily that feel like my head is being squeezed between a vice, I can get pain around my shunt. I can also get very tired quickly and I can get dizziness and have poor balance. But the worse one for me is whenever we have stormy humid weather it feels like my head with explode due to pressure and there’s nothing I can do about that.

Overall though I can have a pretty decent life.

If you want to find out more about hydrocephalus then have a look at this site:


Abbie xx

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