Hydrocephalus: Will there ever be a cure?

Hydrocephalus: Will there ever be a cure?

The number of people undergoing shunt surgery over the last while seems to be on the increase.  Maybe I see this because of the number of friend requests and follows I’ve received on Facebook as Skyewaters, who knows.

You know what it’s like when you buy a new car, for example.  The minute you get a specific model, you start noticing more like it on the road.  Well, this kind of feels like one of those times…

There have been moments where I think I should stop blogging and maybe try to divorce myself from all of it, simply because it does tug at my emotions a bit too much.  My heart breaks alongside a mother of a newborn/toddler simply because I can empathise with what she’s going through.  I feel for the teenager/adult who faces yet another operation.  I feel protective when someone in the support groups shares an experience where they simply weren’t being listened to by medical professionals.  I even empathise with a senior citizen who has just been diagnosed, as if having to navigate this thing called life till now, hasn’t been enough.

It makes me wish and pray even harder for a cure…

A cure which somehow makes me wonder if it will ever be forthcoming.  Are we possibly being a bit too hopeful?  A fellow Hydro warrior who has passed, not too long ago, didn’t believe that we would ever find a cure.  We had a few discussions around this and her opinion, in a nutshell, was that there are too many causes leading to Hydrocephalus and because of that, it would be difficult to find one fix/cure for everyone.  I remember thinking (at the time) that she was just being negative and it IS possible despite what she was saying.  I wanted to believe beyond a shadow of a doubt that the possibility, at the very least, DOES exist.  However, there are days when I think “What if she was right?”.  I’m a realist and would much rather face something knowing the facts, seeing everything as black and white.  (I do try to see the grey from time to time).

Being hopeful, in a seemingly hopeless situation, isn’t always easy but when you are, it does bring with it some form of comfort…

I can live with knowing there isn’t a cure just as much as the next person but how we react to the realisation of it being a permanent state, will differ from person to person.

I suppose it’s like Cancer, it’s been around for years before and (I’m sure), will still be after my life is over.  And, even though researchers have made progress, they’ve only managed to provide people with a little extra time in terms of the treatment they have on offer.  Each persons body/anatomy is different and fights against the disease as best it can with varying levels of affliction.  Hydrocephalus is no different in my opinion.  Simply because, there are those of us who do go years, decades even, between surgeries.  Then, there are those who have had more surgeries than birthdays…

There may not be a cure today, tomorrow or ever…As much as I pray for there to be one, I pray more today for each person facing yet another brain operation at this point in time.  For them to just get through it and recover as best they can.


  • Liz Welker

    March 27, 2018 at 8:18 pm Reply

    I don’t believe we will ever be able to cure all types of hydro. There are too many causes, and some just won’t be curable, although they may be preventable at some time. It’s sad because we have recently lost some members of our community to things that *should* be preventable, and it’s simply inexcusable that most of us face a lifetime of repeat brain surgeries. I count my blessings that I have only had a few–six, since a month old; I’m now 51–but it breaks my heart that so many endure dozens and dozens. Despite this, we rank so low on the totem pole that no one seems to care. Why is that?? THAT is what must change. Before we can consider cure, we need a much more reliable treatment.

    • Skyewaters

      March 27, 2018 at 11:20 pm Reply

      In the grand scheme of things, that is a blessing to only have had six compared to others! Also, I couldn’t agree more, we do need more reliable treatment options. I too consider myself “lucky” and pray my ETV continues to work for a long time.
      Ps. Good question. I’ll need to think about the answer. Maybe another post?

  • Karl

    March 27, 2018 at 8:38 am Reply

    Hi Celeste , yes your friend is right, there is just one too many causes of hydrocephalus for there to be a cure for all. The shunt is merely a temporary fix to a permanent problem. There are too many variables, causes, and immense risks to consider to even remotely contemplate a cure. Case management is so important. Education, case studies, research, having a broad approach to patient care is essential to positive outcomes for patients.

    • Skyewaters

      March 27, 2018 at 8:42 am Reply

      She certainly was passionate in her opinion regarding this. I suppose when you think about it logically, there’s no other conclusion to come to…
      Thanks for your comment Karl?

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