Hydrocephalus: 10 Years Post ETV (brain surgery)!

Hydrocephalus: 10 Years Post ETV (brain surgery)!

It almost feels surreal.

There are timeline estimates placed on the length of time a shunt or ETV could take before it fails, the likelihood decreases (or so I’ve been told). They have a lifespan in terms of success vs failure rate. Generally, 2 years for a shunt and 5 years for an ETV, if you survive past that it’s, more often than not, assumed that your treatment choice has been a “success”. However, this is not something cast in stone as both these treatment options CAN and DO fail, at ANY given time. It also doesn’t mean that you won’t be symptomatic during that time. As is the unpredictable nature of the beast which is Hydrocephalus!

It sometimes feels like a “luck of the draw” type scenario to me.

So “success”, in this instance, is not defined by the true sense of the word. On the contrary, it’s defined as “success”, …until the next time warrants brain surgery necessary.

The last 10 years have not been uneventful, I’ve written about it long enough. It’s plastered all over my site – Skyewaters. So, to say it’s been a breeze, would be an understatement and a slap in my own face, with total disregard for my own experiences. No chance of that happening!

The only time when I needed surgery, since December 2009, when I had my emergency ETV, was last August 2018 to have some ICP monitoring done. For most people with Hydrocephalus, that’s a huge thing – going surgery free for so long.

Have I reached the 10-year mark unscathed?

I wouldn’t necessarily say that I’ve come through it without any challenges or obstacles. The physical effects from being symptomatic have not escaped me.  The emotional, mental and spiritual effects caused by lack of belief and obstacles medical professionals have, over these last 10 years (collectively), given rise to on my path, have not been the easiest to digest or overcome. The labels of depression compounded with feelings of self-doubt, anger, helplessness, an overwhelming sense to just give up and so much more, are all things which have brought me to the point where I am today.

A little wiser, a different person with a changed approach to life in general. My view of life and death simultaneously, is just so unrecognisable compared to a decade ago. Most people say they are thankful for the experiences they’ve had because without it, they wouldn’t be who they are today. For me personally, that would certainly be true – partly.

Do I wish I didn’t have them and that things didn’t have to be this way?

Most definitely! No person should have to fight to be heard. No person living with an incurable condition, should have to feel like they have no way out – except OUT! It certainly puts things into perspective…at least when you’re on the other side of it.

For today, I’m thankful. Grateful even, to have survived this long despite the journey. Humbled that 10 years later, I’m still here, fulfilling my one ultimate wish – to be around long enough for my children. Not many get to say that. Somehow, nothing else seems important enough to me either. I feel a huge responsibility for bringing them into this world, a place I view differently now, compared to when I first had them…

Whenever I have been consumed by pain so bad and death seemed more of a viable option, I would negotiate with God. “Not now, please…I just want to make sure I take care of my children until they can stand on their own”. I know it doesn’t work that way. I know…

It doesn’t stop me from being hopeful.

Hope…not for a cure, as I don’t believe that’ll happen in my lifetime (I may be proven wrong but that remains to be seen), but hope nonetheless.

Most people, living with Hydrocephalus would rather not feel the effects of the condition or endure more (or any) brain surgery. We empathise, comfort and walk the path with each other especially those going through some of the worst times of their lives with this condition. And, we celebrate with each other, understanding fully when you reach a milestone, whether it be 1 year or 10 years, surgery free. The ones who have gone even longer than that, are an inspiration and a beacon of hope that somehow the same outcome is possible for oneself.

Despite knowing that surgery is never out of the equation for my future self, I celebrate today and surviving the last 10 years. Taking the good with the bad, one Day, Year and Decade at a time…

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