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Growing Up With Hydrocephalus

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I’m Nina, 38 and living in the United Kingdom. I’m a creative wonder with a totally awesome sense of humor and a fabulous taste in music!

I was born in 1983 (with most of the best people) to two wonderful humans. I must give my parents a shout out, they’ve been awesome, and I owe many of my successes in life to them.

I had a pretty normal (I mean, what on earth is “normal”??) life growing up. It was smooth and easy. I would say I didn’t have a care in the world, knew where I was going and what I was doing with my life. At the age of 14 I began having intermittent headaches, they progressively got worse and began to affect my eyes until I had permanent double vision. By this point I was 15. Obviously, I had been to both the hospital and a general practitioner at this point several times, but it isn’t really about them. There’s a huge lack of awareness for brain injuries and this is a battle that needs fighting and is being fought, just not by me. It’s a horrible situation. I almost lost my life by the time someone was listening (to my dad swearing and generally being angry in a&e) but you have to put things like that to one side.

A couple of months after my 15th birthday I was eventually admitted and scanned at the hospital.  I had a large and damaging bleed in the center of my brain, that’s the pineal region of the brain should anyone want to investigate.  I was very very ill, I had a huge amount of pressure and water on the brain (hydrocephalus) which was down to the damage that had been occurring in my head. At this point, the damage caused was irreversible and left me shunt (brain drain) dependent. The bleed was caused by a leaky vein, a cavernous angioma (to me it’s a dodgy brain vein).

What the heck is a shunt?

Well, folks, to me it’s life, everything but at the same time a right pain in the ass and a constant reminder of being ill.  In basic terms, a shunt is a tube that drains excess cerebrospinal fluid (CSF/brain juice) from the brain to my stomach. In “normal” people (ha, must laugh) there’s a natural canal in your brain where CSF flows. I suppose you can think of CSF like oiling the Tinman (yes, this is the first thing that came to me), just a bit more extreme. Like if the Tinman wore a spacesuit filled with oil so he never seized up. The CSF keeps your brain nice and fresh (I totally made that up but it sounds good).

So, to conclude our shunt discussion, shunt = life? Ha, well, not quite all of the time. Sadly the downside of shunts is that they can block. It’s not uncommon for what I like to call “brain fluff” to get itself stuck in my shunt resulting in horrific headaches once again, poor vision and vomiting. So, as I am writing this, I’ve had around eight or nine brain surgeries, I honestly lost count at four!!  I think it’s nine …

Aside from regular headaches and a few other things, having hydro has affected my eyes quite badly. As I’ve mentioned I had double vision (diplopia – such a good word, it feels very much like the name of a dinosaur)  which finally became permanent, I spent time wearing awful thick contact lenses which would block sight in one eye but sharp got sick of that and demanded my eye doctor do something. I say demanded and I really mean it. I don’t beat around the bush. I walked into his office, told him if they didn’t sort it I would get a fork and stick it in one of my eyes. Sorry for that vision, not a nice one but anything would be better than double vision for life. I should mention that before my somewhat mafia-style demands, eye surgeons tried twice to fix my double vision but sadly it never worked.

Not long after my somewhat horrific “forking” demand, my wonderful eye surgeon came to me with a new idea, they’d not done it before but it could work and I was up for giving anything a go. In simple terms, they put a black lens inside my eye behind my actual lens. It’s like a cataract operation but instead of taking something out, they put something in. Anyway, great news, I was blind in one eye. Hurrah! Funny thing to celebrate but I can’t remember another time I have been that happy.

Pre-15 I was calm, studious and I aimed to please. Brain surgery changed me, I returned from a coma and major surgery with a massive attitude, a maniac some might say!! Not always a bad one, but I am not the kind of person to beat around the bush, I am one of the most honest people you will ever meet.  I have a huge sense of determination and although I am unable to work full-time, I’ve had to deal with my illness affecting all areas of my life, I try to look forward and plough through!

Some may say I’m a tornado in the calmest place on earth, others will say I get the job done, a proper doer. Either way, I say what I say and I swear too much!

“Life may not be the party we hoped for, but while we’re here we should dance.” Proverb</

Getty image by Bhupi

Originally published: April 18, 2022
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