Hydrocephalus : Losing your eyesight

Hydrocephalus : Losing your eyesight

There are so many what ifs with Hydrocephalus.

  • What if I need further brain surgery?
  • What if my short term memory doesn’t improve?
  • What if I don’t recover from surgery?
  • What if something goes wrong during surgery?
  • What if my shunt/ETV fails?
  • What if I don’t recognise the signs or symptoms?
  • What if I lose my eyesight?

The list goes on…

I have a cousin who had surgery to remove a tumour on her brain, a few years back.  She’s older than me.  The doctors took slightly longer to attend to her medically and make the call to actually operate, in the end when they did, she eventually lost her eyesight.  At the time I thought that must be absolutely terrible.  But, how could I possibly know when I’ve never actually gone through it myself? I can only imagine what it must be like.

For myself, I’ve gone through the motions of facing the possibility of losing my vision.  It’s something that doesn’t bother me quite as much now as it used to when I was first diagnosed.  However, it’ll always be at the back of my mind.  Knowing that a pressure buildup and not being treated in time could put a strain on my optic nerves and cause irreparable damage, is not a comforting thought.  I suppose, for me, this is part of the reason I stress when doctors don’t listen or respond favourably to my cries for help.  I hit a level of paranoia because that’s simply not what I want to happen to me.  Can anyone blame me..?

I think if I were to get a diagnosis like that though, I would probably look at it this way:

Hydrocephalus was a diagnosis I simply did not plan for or enter into the equation of my life and future.  Sure, it freaked me out because it’s only treatment option is brain surgery after all.  But, in time, I’ve come to simply accept this condition and all of its little intricacies.  I simply don’t plan for the future (to a degree), I remain vigilant and aware of the possibilities AND I ACCEPT.  I’ve learnt there’s no way to control any of it (for someone who knows no other way than to be in control of it all, this is quite a hard thing).

If life chooses to deal me that card on this Hydro journey, then so be it.  I cannot change what goes pear-shaped physically with my body but, I can choose my attitude towards it.  Don’t misunderstand, it doesn’t mean that I won’t be angry, scared, depressed or whatever else in terms of negative feelings I may go through.  I’m human after all and if that means I get to throw my toys out of the cot from time to time (while I process it all), then so be it.

As of right now, this point in time, I simply cannot imagine a life without my sight.  Also, I cannot fully appreciate what a gift it really is or how blessed I am to have it.  That, being said, despite knowing that I live with the possibility of losing it.

I often wonder about my cousin and the life without sight she now lives.  I suppose it’s like anything else in life…you don’t know what you have until you lose it.  And when something does happen, you learn to adapt, live with it and move on.  Because quite simply, you just CANNOT let it drag you down – fight it with every fibre of your being.

Hydrocephalus is not a condition that allows you much pleasure when you view it up close.  However, it is a condition that enables you to view life through a different set of eyes…sight working or not.

4 Comments

  • Ken Harten

    July 21, 2020 at 11:31 am Reply

    Hi Skye I was diagnosed with hydrocephalus at the age of 2 months of age and had constant checkups then at the age of 8 had my shunt replaced, a year later my tube was lengthened then nothing from 1973 until 2019 when I needed 50 mls of csf removed.

    • Skyewaters

      July 24, 2020 at 10:35 am Reply

      Hi Ken. That’s a long time! I’m glad you didn’t have to endure too many surgeries ?
      Thanks for sharing ?

  • grizz1ybearDuncan

    December 18, 2017 at 9:53 am Reply

    Great artical Again Skye, that is one thing I never really thought about, loosing my sight from Hydro.
    I tend not to think of all the things that can make my condition any worse than what I have been through?
    I am now just being able to get around on my own most of the time without the use of a walker or cans. 2 years since last surgery. (yahoo!) I still have my daily head pain that kisses me good morning usually around 2:00am which is so hard to deal with, has become a barrier in my bedroom also making my wife move her sleeping to another room as so I don’t wake her.
    That’s pretty minor compared to loosing ones sight, or one of the other many side effects from this Horrible condition.
    Even the headaches would be minor compared to loss of sight I think? The two together would be devistating! I have accepted that when my wife travels that it would be to hard for me to join her, (the last time I flew, my Shunt exploded while at Disneyland, that made for a not very enjoyable time at the Happist place is the World. And yes it may have been a one in a 1,000 time occurrence, I do not want to ever have that happen again:(
    Skye I love reading your Blog. I keep my own journal for someone to pickup and read when I am gone? But also it helps get my thoughts out of my head and lets me move on to the next delima in my life.

    • Skyewaters

      December 18, 2017 at 6:55 pm Reply

      Wow! I can only imagine what that must be like, to have a shunt explode inside of you. I’m sure it was every bit as terrible as you say.
      I pray your surgery free years continue for a long time to come. And, thank you for your kind words. As for my blog surviving after I’m gone, that probably won’t happen. But, while I’m still here, I continue to write in the hope of helping others.
      Stay blessed?

Make yourself heard and contribute to the conversation

This site uses Akismet to reduce spam. Learn how your comment data is processed.