Hydrocephalus: Know. Understand. Appreciate…

Hydrocephalus: Know. Understand. Appreciate…

I have Hydrocephalus and I’ve had brain surgery to treat it. 5 thus far, in fact. I’ve had a VP Shunt, which has been removed and for the last 10 and a half years, an ETV. But…, this doesn’t mean anything in the grand scheme of the condition. Too many people across the world have had more brain surgeries because of this condition, which is also the number one reason for brain surgery in children (some only a few hours or days old). Being an empathetic person, this is probably the one thing that really gets to me… 

There are some common misconceptions people form after you’ve had brain surgery for Hydrocephalus. They think that: 

  • You have been cured. 
  • You no longer have headaches.  
  • You are fine and back to “normal” – “Just give it time…”, they say. 
  • You should be, “thankful that you’ve survived” and “fought well”. 
  • You have so much to live for. 
  • You are stronger than you know. 
  • You are brave. 
  • You are too negative and need to be more positive! 
  • … 

People mean well (some at least) and, they think many things. Some might argue that one person doesn’t know what the next is thinking; so how could I possibly say any of this? True as this may be…actions speak louder than words, and sometimes, spoken words are heard loud and clear (Painfully so). 

FACT: Brain surgery for Hydrocephalus is NOT a cure. It doesn’t mean that the symptoms disappear completely after surgery either. In all fairness, this might be the case for a while (However long that may be, depends on person to person). And, when said symptoms rears its ugly head again, time after time, the state of mind of said person diagnosed with Hydrocephalus, jumps from 0 to 1000 in a millisecond because, you’re sitting in the front cart of this hell rollercoaster ride! 

What people don’t realise though, and what I wish they knew, understood and appreciated, is even after brain surgery: 

  • You have NOT been cured. 
  • You STILL have headaches, vomiting, nausea, etc. And, you can’t always fix it or take a drug to make it better. More importantly, you don’t always get the medical attention you know you need because, quite frankly, you know your body better than anyone else. 
  • You are NOT always fine and, “normal” is something undefined and without context (mostly as you’ve been forced to find a new and ever-changing norm. Living a constant, unpredictable life, waiting for the other “shoe to drop). And, as for “time” – Define that, in-between Shunt or ETV failure
  • You ARE thankful that you’ve survived and “fought well” but only because YOU HAD NO OTHER CHOICE. And, you KNOW the last “fight” was only preparation for the next – guaranteed to rear its ugly head. 
  • You have so much to live for”, regardless of the context within which it’s said, is something which sounds patronising, most days. However, and regardless of whether you know this to be true or not, you do acknowledge it…in your own time!
  • You are stronger than you know because, once again, YOU HAVE NO OTHER CHOICE
  • You are brave…like I’ve said – YOU HAVE NO OTHER CHOICE
  • You are as positive as you can possibly be, under the circumstances but, the fact that you are the one living with the condition, understand the full extent of it all (at least better than most), makes it almost impossible to be in this state of mind, majority of the time. So, you dip from time to time. 
  • … 

The effects of the condition aren’t always easy. The havoc the condition itself causes in your life, takes its toll eventually, on all levels…physically, mentally, emotionally and spiritually. It even affects those relationships closest to you. The bouts of anxiety and depression are nothing to take lightly. The pain is real. The struggle is real. The endless days and nights of feeling helpless and lonely, is enough to drive anyone over the edge…An edge you fight for dear life not to go over – the reality so many live with and something most people would rather not talk about or face. Not helpful! Brain surgery equates Brain Injury – a very real threat to the human psyche and not something to be ashamed of. 

All of this is exacerbated when you watch yourself struggle daily with: Memory issues, unable to process information, having “senior moments” at a young age, ridiculed by others for your shortcomings (intentional or not – it hurts the same), turning into a “monster” because your mood has turned a nasty sickening shade as the onslaught of symptoms creep up on you, struggling cognitively because you’re just not the person you used to be…  

You get angry, feel tired and know that showing up every day to do life, is something you’ll continue to do – until you can’t. You need the moments in-between to catch your breath, to feel low and rise to the surface in your own way, time and space. But, more importantly, you need to do so without judgement, blame or ridicule.

We’re all just doing life the best way we know how – Off script! 

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!

2 Comments

  • Michelle

    June 17, 2020 at 1:24 pm Reply

    Hi just after some answers if possible to some questions. I’ve been a bit off for a bit now, can’t quite put my finger on why. I have hydrocephalus with a shunt fitted a good few years back now. Over the last few weeks/months I seem to be struggling with my mood, I’m getting really bad/annoyed moods and headaches are driving my nuts. My memory seems to be struggling, but when I see my consultant he reckons everything is ok. Is it possible my shunt sometimes works ok then other times not that causes all these problems. People don’t seem to get why my moods have changed. Also seem to be getting seizures or blank spots as I call them, where I don’t actually know where time as gone. Hopefully someone could help, and thankyou.

    • Skyewaters

      June 18, 2020 at 12:32 am Reply

      Hi Michelle

      From what you’re describing, I would definitely be considering it as a possibility. If your current consultant doesn’t think so, you can always seek another opinion. Trust your gut.
      Personally, the mood issue has affected me and I now know, from experience, when it’s attributed to my Hydrocephalus.

      All the best💙

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