Hydrocephalus:  Process of elimination is backward, with treatment failure (Shunt/ETV), being first…

Hydrocephalus: Process of elimination is backward, with treatment failure (Shunt/ETV), being first…

Feeling ill could be caused by anything, I know that… 

I’d be lying if I said, at the first sign of a headache, I don’t get my back up against a wall.  Even being overcome with nausea and loss of appetite has me wondering if it’s the start of “something“.  Prolonged sleeping episodes are also probably at the top of the list.  And, just to complicate things a little, these symptoms don’t necessarily need to be in any order or even felt at the same time.  Failures don’t follow a script, they aren’t the same for everyone and they sure as hell don’t always fit into the text book version. 

I can’t speak for anyone else, only for myself when I say, my personal preference is to rule out ETV failure first when feeling unwell.  And, when I had one, shunt failure. (Turns out I was right when this was happening despite the uphill battle I fought to be heard or taken seriously). 

Most times, when I’ve sought medical help, staff always seem to work their way around the fact of what it could be.  A cold, gastro issues or even just a migraine…anything other than treatment failure. 

I can understand this to a certain extent.  Can you imagine if everyone jumped and reacted to the “sky is falling” scenario?  Where would we all be and what would that look like…? 

It’s a fine line I suppose… 

Sadly, I’ve found most medical staff aren’t as informed as you’d like them to be about this condition.  (Something the medical profession should give some serious thought to).  Maybe there’s an argument to be made, especially since there are SO many conditions and diseases to keep on top of. 

After all, they’re only human…Fair point

But I do so wish I had their attitude to the condition which plagues my thoughts, more than I’d prefer.  And yet, I’m glad I don’t. 

A headache has me on alert, waiting for it to escalate…. relief follows when it doesn’t and life carries on.  Some family and friends are more of an annoyance when they dismiss your pain with “Oh, I know what you mean…I get headaches all the time.”  No, you don’t know what I mean!  You have the luxury of dismissing the internal fear and anxiety I experience, I don’t.  Unless you have this condition and unless you’ve had brain surgery because of it, you have NO idea. 

A fight which I’ve come to realise is not worth the effort or emotion it evokes. 

I remember a time when I used to pop pain pills 4 times a day (sometimes more).  Thankfully, I’ve started doing so less over the years. 

As someone who’s experienced the adverse effects of just a normal headache turning into something else, and ultimately leading to brain surgery, I don’t feel as comfortable to start at the opposite end of ruling out root causes. 

If I had to liken it to something, it would probably be the same as experiencing something traumatic.  It triggers fear, anxiety and a certain degree of helplessness followed by a F*** you moment.  A time where you face this condition, looking it squarely in the eyes, saying: “Give it your best shot!” 

We live to fight another day most times…I have thus far. 

Can anyone really blame someone with this condition for jumping to the suspicion of shunt/ETV failure at the first sign of known symptoms?  Is it really so easy to bring yourself back down to earth and say, “Oh…maybe I’ve just got a cold or, my sinuses are playing up or, my Thyroid is messing me around or, maybe I’m just a tad stressed…”(I’ve forcefully tried this approach but I keep reverting to the same pattern)? 

This list could go on and on… 

I see so many parents asking the same question in the Hydro support groups.  Wondering if what their child is experiencing could be failure…I sense and feel the helplessness…I don’t blame you! 

My advice to anyone touched by Hydrocephalus as always is, remain vigilant and never doubt yourself.  You have more to lose if you don’t take this condition serious enough.  And, if you’re wrong, then that’s a win either way you look at it. 

Regardless of how “well informed” I think I am with what I should expect, there will always be that nagging fear.  Maybe one day I’ll get to a point where ETV failure is the last thing I suspect. 

Truth be told, as long as I know what I do about this condition and, the more I learn, the harder that becomes. 


  • Linda

    March 3, 2019 at 12:40 am Reply

    I hate that we have such an up and down experience and that there is so little in the way of protocol when we present at an ED ferling like crud. Do they not have the sense to have NS on call for emergencies?

    • Skyewaters

      March 3, 2019 at 1:28 am Reply

      I’d say it’s a mix of things. I’ve had Neurosurgery get involved when I’ve gone to ED.
      But, ED doctors do CTs when MRIs (with flow study) are better at identifying problems with ETVs. Though, I understand that CTs are easier to do when you go to ED which is something that needs to change as well. I, for one, also have slit ventricles so my vents won’t change much.
      When it comes to “sense” in relation to Hydro patients, there does seem to be some gaps.

  • Anonymous

    March 1, 2019 at 7:17 pm Reply

    Thank you. My daughter is 36 she’s had many shunt replacements over the years.January 28 she had ETV surgery. She is handicapped. We were out of options due to infections. As a parent you spoke for her what she has been going trough all of these yrs. Sara’s Dad Thanks Again

    • Skyewaters

      March 1, 2019 at 10:58 pm Reply

      I’ve just recently learnt how complicated it can get when the number of surgeries you undergo, prevents shunt placement.
      I pray Sara’s ETV holds up better than the shunts. ???

  • carol solle

    March 1, 2019 at 6:45 pm Reply

    I had an ETV April 5th last year. relief from gait problems/headaches never came, although stoma was open and allowing CSF to flow. Doc figures I just wasn’t absorbing well. Long story short, scheduled for shunt surgery April 12. Figures crossed!

    • Skyewaters

      March 1, 2019 at 10:54 pm Reply

      Sorry to hear the ETV isn’t working so well for you. I hope the shunt serves you better ????

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