Hydrocephalus: Waiting for an upcoming appointment…

Hydrocephalus: Waiting for an upcoming appointment…

Read this if you’d like to gain a better understanding of the mindset of someone with Hydrocephalus, waiting for an upcoming appointment. (Generally speaking, of course, as we all approach situations differently).

I posted yesterday that I’m feeling “anxious” about my upcoming consult tomorrow. Truth be told, there’s probably many words I could use to describe how I feel but it really doesn’t matter.

I think this comment from Norma Haggard sums it up perfectly:

“The all clear sounds good to people without Hydrocephalus. To us the fear they missed something and frustration that we don’t have answers is not enough to make us feel confident and calm our fears. Anxiety for these appointments is an understatement”.

Personally, I’ve been dismissed since 2012. My symptoms, since then, have been written down to:

  • A mother who is overtired from interrupted sleep by a toddler.
  • Stressed from moving between countries and starting a new job.
  • Depressed (my all-time favourite NOT!).
  • Incorrectly diagnosed with Hydrocephalus.
  • Drug seeker…

The list is endless and quite frankly, my patience with all of it is non-existent.

I’ve said it before, no sane person goes into these consults asking for brain surgery. For the record, I consider myself as sane as the next person. Bottom line is, if Dr L didn’t actually utter the words “intermittent failure” (confirming my suspicions), then I’d be lost for an explanation. That was earlier this year and something, which put me on an even higher alert.

Over the years, I’ve been driving myself nuts trying to figure it all out:

  • Why do I feel this way?
  • Are my symptoms a figment of my imagination?
  • Am I making a big deal out of nothing?

Diagnostic tests showing everything as “normal”, brings so much to the surface. All the questions above and so much more…

One thing, which I feel is absolutely valid, is the time it takes between you actually being symptomatic and when you have your consult. (Like the one I’m having tomorrow – symptomatic in March and July = Consult end of October. My body has taken time to recover and self-heal). This has been the trend over the last couple of years…

Or, when you go to the Emergency room at the hospital and you have to deal with a Registrar who is less experienced and clearly has no experience with Hydrocephalus patients. Their book knowledge clouds their judgement and their “I’m the doctor, you’re just the patient” attitude gets in the way. Especially if they’re led by the same head of Neurosurgery with the god-like complex.

When you feel deathly ill, your lack of energy encompasses all – physically, mentally and spiritually. You’re unable to put up much of a fight, which you are bound to lose. One resulting in you being sent home without much being done.

So, the birthplace of my “anxiety” and “apprehension“, exists because of this. It’s not about an attitude adjustment, it’s not about me being negative or having faith…it’s about me being hopeful of a better experience tomorrow. It’s about me going into this ring for the umpteenth time, where I’ve been knocked down so many times before. Something, which has left me feeling like I just want to give up. But, not today…

I undoubtedly expect the same outcome as countless times before, simply because I won’t be disappointed too much in that case. In which case, I also know fully that, I’ll have to wait until the next time I’m symptomatic or worse. (The possibility of “worse” is highly likely and I understand this better than anyone around me).

OR being hopeful of Dr L saying, “I think we need to go in and see what’s going on”. (I’m ready for that, have been for years). It’s an internal dialogue and analysis, filled with so many outcomes, thinking back and deciding how best to approach the appointment:

  • How much do I share?
  • What’s been disregarded before by others that could possibly have the same effect of being dismissed again?
  • Should I pretend to not know as much as I do?
  • Should I offer my opinion on what’s happening?
  • Do I tell her about the nerve pain, right-sided numbness and headaches I’ve been having all week (probably due to my C5/C6 degeneration)?
  • Something which is slowly subsiding so maybe not even worth a mention?
  • Will this change the focus, or will she be different and take both into account as separate issues?

What most people don’t understand, even some with Hydrocephalus is, despite all the tests – if there’s the slightest amount of scar tissue (web-like) unseen on an MRI, it will cause issues. If your body produces too much CSF, which your ETV can’t handle, it will cause issues.

We are not all the same and the way this condition affects our body isn’t either.

I cannot and will not ignore the signs my body is giving me. FFS! I want to live in this miserable world after all, though after everything I’ve been through, I have to wonder why…


  • scottmccabe

    November 1, 2019 at 12:30 am Reply

    Completely understand I have been waiting since originally Dx in April then had lp in june and drain in Aug now waiting for NS APPT on Nov 12. I just want something done!

    • Skyewaters

      November 1, 2019 at 12:32 am Reply

      The waiting time is ridiculous! And, while you wait, life goes on regardless of whether you’re symptomatic or not😔
      Hang in there💙

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