Hydrocephalus: Life interrupted…

Hydrocephalus: Life interrupted…

Today, the 2nd of December, marks 11 years since my emergency ETV was performed (the previous 2 day’s surgeries, were unsuccessful). 3 surgeries over 3 days, while 5 and a half months pregnant…

Day 1 – VP shunt revision of a Medtronic Programmable

Day 2 – VP shunt replacement with an Orbis Sigma

Day 3 – Endoscopic Third Ventriculostomy (ETV) and VP shunt removal

As my husband explains it: He had just pulled up at his aunts’ house where we were staying, after visiting me at the hospital, when the surgeon called him. He said there were some complications and he needed to perform an emergency ETV. He would need a decision within the hour and was preparing to scrub in, ready to perform my 3rd brain operation.

No one could ever have prepared me for it. My last memory is of myself laying my head down on the pillow the Sunday night before check-in at the hospital and the next, waking up in ICU a few days later…

A few days prior, I thought I was getting another opinion to confirm shunt failure and quite literally, did not think past that point. A subsequent lumbar puncture confirmed pressure high enough to warrant surgery, without delay. I had the weekend to prepare myself; mentally, physically (with a quick shopping trip as I only packed clothes for a few days out of town) and spiritually. My prayer at church that Saturday night wasn’t as much for myself as it was for my unborn child. I bargained with God, begging and pleading for her survival, feeling numb to my core. I know, that’s not how it works but, I did it anyway. Smiling through it all. Feeling conflicted because, regardless of whether I had surgery or not, I knew both our lives depended on it, either way. No amount of comfort could erase what I was facing, nor what I would go through. At the same time, I felt immense relief because someone had FINALLY listened to me!

It’s not a case of something you brush aside and just forget about. For me, it’s about remembering and remaining thankful that we both survived!

Even war heroes are celebrated and remembered throughout the years, which is why I remind myself each year that passes…albeit in the silence of my heart and mind.

There are times though, that it truly feels like I’m at war with this condition.

It’s taken for granted, by some, that surgery to treat Hydrocephalus will go as planned, you’ll be in and out in no time. (Mostly those around us, not physically diagnosed with Hydrocephalus). And, even though this might be the case for most, there are times when it’s not. I can only imagine what my family endured during that time. I don’t envy them. As a friend recently pointed out to me, maybe that’s why my husband reacts the way he does whenever I mention feeling symptomatic. Any mention of further surgery, is a point of contention. He simply doesn’t want to relive that time. Or, maybe he just doesn’t want to lose me. (I don’t think he understands that, it’s not a either/or situation but, more of a; “Damned if you do, damned if you don’t!).

We don’t plan these things. You never know when, and if, your treatment option is failing. All you know is, the likelihood is very high. We go into surgery trusting fully…be it the doctors and nurses or God. To each their own. We believe that everything will be OK, until it’s not.

I may not remember anything from that time but what I do remember, is enough to have traumatised me. (Along with all the blanks filled in after the fact). It’s probably the one reason why I’ve pushed so hard, for someone to take me seriously, when my symptoms arise.

Would you be able to live with the knowledge that surgeons will only act if you are “at deaths door”?

For most of us, this is the case. How can that possibly sit well with anyone? Is it really fair to think it’s an overreaction or dramatisation from anyone who responds in a certain way? (Perceived as negatively by some). Filled equally with fear and anxiety at the thought of having more brain surgery vs not being taken seriously…And, feeling helpless either way.

29. That’s how old I was when I was officially diagnosed. My world literally stood still and, dare I say, it was a tumultuous time in my life. Interrupted. Turned upside down. Overwhelming. So much uncertainty and fear. And, a fight to be heard…from the start! Followed by multiple brain surgeries, and knowing that each one of them will only last as long as my new abusive life partner, will allow.

Until the next time…

It’s a slippery slope of mixed emotion as I try to remain thankful and cognisant that 11 years have passed since then. Statistically, I’ve been told ETVs normally fail within 5 years but, experience and connecting with others have taught me, this number is different for all of us. Only 1 interruption since then, with ICP monitoring two years ago. I haven’t been able to reach a level of comfort where I can say I’m OK with having to face further surgery. If that makes me weak, then so be it.

Trauma is trauma and, selfishly (brain surgery and Hydrocephalus aside), I feel like I’ve had my fair share over the years! One thing I know for sure, Hydrocephalus certainly doesn’t leave anyone unscathed. Whether you’re the one diagnosed with it or the person watching someone you know and/or love, go through it, is irrespective. Time stands still for that moment and nothing else matters, as life hands you a healthy dose of perspective, with a life interrupted…


  • Pippa Taylor

    December 2, 2020 at 12:28 pm Reply

    So much of this is relatable to me- the blank point of time; the anxiety and stress of not knowing if (or when) your treatment option will fail; the feeling of helplessness as you watch you loved ones try to cope; the feeling of being disbelieved. Sending love.

    • Skyewaters

      December 2, 2020 at 8:09 pm Reply

      Thank you. Sending love right back at you💙

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