Hydrocephalus : The effects run deeper than just physical pain…

Hydrocephalus : The effects run deeper than just physical pain…

It’s been 9 years since I last had brain surgery, excluding the ICP monitoring I had a few months back.  I feel fortunate, for lack of a better word, compared to others who endure more harrowing times.  The moments in-between where I questioned and wondered if what I was feeling was ETV failure or not, does not escape me.  Thankfully, I haven’t been having daily headaches as most complain about.  This condition affects all of us differently…

The thing is, the effects of Hydrocephalus run deeper than just the physical pain we endure, something most don’t realise.  And, it’s not limited to just a “headache”.  (A watered down word for what it really feels like when the mother of all pain hits).

I’ve had Neuro specialists tell me that my memory shouldn’t and couldn’t be affected the way I describe.  I’ve been told I’m depressed and would benefit from anti-depressants (as they serve a dual purpose of managing my pain AND “my depressive state”, something they won’t specifically say outright).  One even went as far as to say “I never had the condition to begin with”.  (Seriously unbelievable after multiple brain surgeries but, how dull would life be if it didn’t get better than the last dumb poop head you dealt with?)

Cognitively, I struggle too.  Something which brings me to tears most times in the silence of my own company.  Making choices between more than one item puts my head in a literal spin and has me feeling inadequate to my core.  It really doesn’t matter what it is, my brain simply lacks the processing power to choose.  I’ve perfected the art of masking on so many levels and being like a duck, I forget just how good I am at it.  I do this as a coping mechanism because Lord knows, I need it…And, my family relies on me to have it all together.

A little while back, I got into a real bad fight with my husband because of this exact reason?  As much as we (people diagnosed with Hydrocephalus), fight the condition and the effects of what I’ve mentioned above (there’s so much more), this is an added “bonus” to contend with.  He’s not convinced that any of it’s connected to me having Hydrocephalus or having had brain surgery…in any way.  (He attributes it to me either “getting old or I’m doing it on purpose”)…I’ve given up trying to convince him otherwise!

I do wish I could be as sure as he is!

Some days, I feel it would be easier to just walk away.  Call it quits and just give up the fight for understanding and genuine empathy.  If I had to place myself in another’s shoes (my husband specifically), I would probably be able to understand how frustrating it must be to deal with someone who constantly changes the goal post, oozes indecision and jumps from pillar to post.  But, theres a difference between us – I’m an empath by nature therefore, I would handle the situation so much better – should the roles be reversed.

Personally, I find it all exhausting.  This is probably why I can only imagine that those around me, feel the same way.  Also, because I’m aware of my challenges, I’ve developed a way to limit my effort when it comes to any of the areas I know I struggle in above.  As an example, if I know I’m going to struggle with remembering directions to a particular place, I don’t even bother listening to his verbal guidance (he absolutely hates it when I do this).  I rely on technology to get me where I need to go without the added stress.  Something he doesn’t know (or want to know), much less understands…Life’s too short to try and figure it all out…plus, I get tired of repeating myself.

Admittedly, I’m not the easiest person to deal with at times.  I’ll be the first to admit, I’m stubborn as hell and, I have my flaws.  But…who doesn’t?

The condition isn’t necessarily a death sentence (she says treading with caution), others have succumbed – those we know of and those we don’t.  However, it isn’t as easy to live with, as those who dare to disregard the effects it has on the one diagnosed with it, think.

As humans, it’s sometimes too easy for us to pass judgment, offer advice or belittle a situation when we aren’t physically going through something ourselves.  More on this in another post…


  • Karen

    February 2, 2019 at 6:35 pm Reply

    You have just described me. They said I don’t have hydrocephalus. I am not convinced, I have spina biffida occulta and a syrinx in the spinal cord with other problems just told me I was a complicated lady. My son has hydro though.

    • Skyewaters

      February 2, 2019 at 9:46 pm Reply

      I can’t understand how one doctor can say you have it and then the next not. Something I simply will never understand but yet I expect to hear it. It’s interesting that your son has it too! Not many have more than one family member affected by Hydrocephalus.
      Thank you for sharing Karen. 💙

  • Philip Mastromonico

    February 2, 2019 at 3:07 pm Reply

    Once again, Skye, you have written VOLUMES! The outside world will never understand what we endure. Such is life with an “invisible illness”. Complete unconsciousness is the only state that gets me help. Others will never know what life is like living with a ticking time bomb, not know when your next “event” will take place. No one will know the pain of having to write everything down because your working memory just can’t be trusted, or waking up “tired”, or not knowing someone’s name after hearing it for the first time, or…..I could go on ad infinitem.

    • Skyewaters

      February 2, 2019 at 9:41 pm Reply

      As true as I know that to be Philip, the outside world not understanding, I do wish that I can help at least one to see things differently.
      I 100% get the ticking time bomb analogy too! At least I have the Hydro community who understands…for now, that’s enough💙

  • Ron Patrick Kelleher aka Hydropioneer

    February 2, 2019 at 2:13 pm Reply

    I wish I had the power to place a shunt in people’s head who don’t believe what we go through. I can bet he will be begging you to remove it after a month or so. I totally relate Skye to all you written. I would not wish this condition on anyone. There are times when my head is pounding I have to think out how to hold my utensils or reaching for a glass which has spilt in the process. I walk like an elderly person or like my feet are walking on gum. I have been walking the dog just on the next street trying to find my house or forget where I am going. Luckily it doesn’t last long but those few minutes feel like a lifetime. I have been rushed to hospital and wheeled in the wheel chair hunched over unable to speak. I have had my shunt unblocked in the treatment room while awake with a syringe placed into my shunt (they call it a shunt tap today and 15 minutes later I come out with a huge smile and skipping down the ward halls. We can change our personalities in the blink of an eye. I hope you let your family read this. Excellent article as with all the rest. -Ron Kelleher (Hydropioneer)

    • Skyewaters

      February 2, 2019 at 9:39 pm Reply

      Thank you Ron. The challenges are real, even when others perceive it not to be.
      As for them reading it, who knows. Maybe they stumble across it, maybe they don’t…you can take a horse to the water but you can’t make it drink.
      Thanks for sharing💙

  • Anonymous

    February 2, 2019 at 6:10 am Reply

    Thanks for sharing your experiences,I can so relate.

  • Cathy J Losenegger

    February 2, 2019 at 2:41 am Reply

    Hung in there.

    • Skyewaters

      February 2, 2019 at 2:48 am Reply

      I am 😉

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