Hydrocephalus…but I’ll keep smiling

Hydrocephalus…but I’ll keep smiling

I have Hydrocephalus…I wasn’t born with it but was diagnosed 6 years after having my 2nd run with Viral Meningitis.  The road has not been easy and I can literally say that my whole world changed the day I found out I needed a brain operation.  Can you imagine facing that?  It sure as hell was scary and one of the worst things I’ve had to face in my life…and I’ve had 4.  This in itself, is nothing in comparison to the thousands of children and adults who have had countless operations because of this condition.  It is not a disease…so please don’t misunderstand.

Here’s a brief explanation:

Hydrocephalus is the buildup of too much cerebrospinal fluid in the brain. Normally, this fluid cushions your brain. When you have too much, though, it puts harmful pressure on your brain.

Hydrocephalus can be congenital, or present at birth. Causes include genetic problems and problems with how the fetus develops. An unusually large head is the main sign of congenital hydrocephalus.

Hydrocephalus can also happen after birth. This is called acquired hydrocephalus. It can occur at any age. Causes can include head injuries, strokes, infections, tumours, and bleeding in the brain. Symptoms include

  • Headache
  • Vomiting and nausea
  • Blurry vision
  • Balance problems
  • Bladder control problems
  • Thinking and memory problems

Hydrocephalus can permanently damage the brain, causing problems with physical and mental development. If untreated, it is usually fatal. With treatment, many people lead normal lives with few limitations. Treatment usually involves surgery to insert a shunt. A shunt is a flexible but sturdy plastic tube. The shunt moves the cerebrospinal fluid to another area of the body where it can be absorbed.

A few weeks ago, I went to see a neurosurgeon.  The visit was good and not so good.  Good because he told me I didn’t need an operation at the moment and he had no cause for concern.  (Thank God!)  Not so good because he told me I needed to be vigilant in terms of very bad headaches (A migraine) associated with vomiting.  This is nothing new to me but it does mean, I need to feel like s*** before I will receive any medical assistance.  I know exactly what I need to feel like before I have to go to the Emergency Department and trust me, it’s not pretty.  (I don’t even want to be around myself when that happens – I become moody, irritable and literally feel like I can bite someone’s head off.  The worst part…my brain feeling like it’s going to explode and squeeze through every little hole in my head).

Can't get up

 If there’s a need for it at this point in time, I will face another operation.  If not, I will be treated for the pain and sent home.  Whoopee…!  (Drum roll)…Morphine cocktail anyone?

I have no room for being proactive and therefore need to be reactive.  Fine!…I can live with that.  In fact, under the circumstances, I accept it purely because I can’t do Jack about it.

reactivemanager

What I struggle with is what he told me afterwards.  I have slight slit ventricles and because of this, I could go into a coma in which case, the people around me will need to act on my behalf…This part I struggle with.  Thanks to one of the effects of Hydrocephalus, my short-term memory is as good as the dog’s breakfast.  I do my best to remedy it but there’s only so much I can physically do.  Luckily because I forget, I haven’t been able to think about it too much.  However, that doesn’t mean that I don’t think about it at all.

Truth be told…I am scared out of my wits.  I haven’t even had time to process it properly but from time to time, I think about what he said and I breakdown.  I feel scared…not for myself (well…maybe a little) but more for my kids.  I want to be able to take care of them.  I want to be around for much longer and more importantly, I don’t want to be in a COMA where I can do nothing for myself and be a burden to the rest of my family.  I’m scared because I don’t know what to expect and I don’t know if or when or even how it will happen.

There used to be a time when I thought it was all in my head (no pun intended).   On my good days, I wouldn’t even think that there was anything wrong with me.  I’ve managed myself well over the last couple of years and purely because I haven’t been able to count on the medical professionals around me.  I put things and systems in place to make sure I don’t hit any trigger points.  Things like:

Cutting out alcohol and cheese, Getting enough rest, Changing Jobs to something less stressful…And as far possible, Minimising the stress in my life.  (Oh boy! This is the biggest one I struggle with…its constant Work In Progress).  

These are only some of the things, which I’ve done to help myself.  More importantly, I trust myself and listen to my body.  Besides, I know it better than anyone else…right?  It’s gotten easier.

At my consultation, however, it was confirmed that “it’s not all in my head” after all.

Hallelujah

(Feels a bit weird being relieved about something like that but it is what it is…)

A few years ago, I thought moving to a different country might be the answer as I might get better medical attention.  I am chewing those words today.

I’m convinced, more than ever, that the knowledge on Hydrocephalus is just too limited…even in the medical profession.  I say this, based on my personal experiences thus far and the mixed messages I’ve received from the specialists I’ve dealt with.  I pray for myself, which is something rare because I always think of everyone else first.

There’s one good thing to come out of my journey thus far.  I’ve written a book, which I hope to publish one day.  It’s called Floating Faithfully.  It details my journey and experiences with this condition and everything I’ve done to survive without the medical professionals.  The sad part for me is accepting that the person I used to be is also slowly fading away.  Because Hydrocephalus is on the inside, people around me can’t see how it affects me…but I know, because I feel it.  I feel myself slipping…and there’s nothing I can do about it.

More importantly, the book serves as a reminder to me of all that I’ve been through and is the perfect “checks and balances” system to affirm that I’m not going crazy.  I can reference back to it and when my memory fails me, I have a place to go to find any details I need.  It also makes for a good read especially since reading it every time, feels like I’m reading it for the first time (Oi! Short-term memory…what can I say :-))

On a lighter side.  During my consult, the surgeon told me to use whatever painkillers I found to work.  In dropping a few names, I mentioned Codeine.  He said “Codeine’s good but it makes you constipated…and in your case, you don’t need that kind of pressure”. Lol!  Guess I’m steering clear of the Codeine ’cause then I’ll really be full of crap.

Dealing with a chronic illness is not easy…It’s about finding the courage to face each day with new strength, regardless of how limited it is.  And, doing the best you can to keep a smile on your dial.

Smile

Keep the faith…

Published by Skyewaters

I blog about Hydrocephalus to give a voice to the millions (if not billions) of people around the world with this condition NOT disease.  As much as these experiences are unique to me and my family, I’m sure others have experienced it too.  My aim…to shine a light on it and raise awareness – simple and challenging at the same time but worth it!

6 Comments

  • Elizabeth Bruce

    July 1, 2017 at 11:45 pm Reply

    I was diagnosed age 1. I have wanted to big about it but may live vicariously through yours. Because you weren’t born with it, it’s interesting hear from u what the contrasts are. Thank you!

    • Skyewaters

      July 2, 2017 at 9:16 am Reply

      You’re welcome?. I just write it how I experience it.

  • Fee Croft

    July 29, 2015 at 9:25 pm Reply

    You have this exactly right
    I was born with hydrocephalus in 1973,was doing really well with just a couple of surgeries for revisions and lengthening of the tube.
    2010 became a nightmare and up until now I have had 23 brain surgeries
    Like you I have slit ventricles,plus I produce too much protein in my brain fluid making it thick like the consistency of gravy and the colour of apple juice,in one surgery I lost all feeling in my left side and had to go back in to have another surgery to fix it.
    This will not beat us,we just need for some genius to come up with a cure
    All the best to you and I hope that you don’t endure many surgeries
    Fee ?

    • skyewater

      July 29, 2015 at 9:34 pm Reply

      Thanks for your comment Fee ? That genius is out there…All the best to you too.

  • kristina

    July 29, 2015 at 1:20 pm Reply

    Thank you for this.
    I can relate to your piece 100%. I developed hydrocephalus at age 27….3 revisions. I’m 42 presently. Knowledge about living with this is very limited as awareness seems so minimal. Thanks again…..so comforting to know the same is experienced by others.

    • skyewater

      July 29, 2015 at 7:08 pm Reply

      Thank you for your comment. I have felt way too lonely facing this condition, and still do. Keep smiling.

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