The “protocol” ED is missing when it comes to Hydrocephalus

The “protocol” ED is missing when it comes to Hydrocephalus

Just an update, since my last post, with me ending up at the ED, despite my internal protests and reservations that nothing would be done…(I always give a situation the benefit of the doubt).  But alas…

There were a few things that stood out for me this weekend:

  • Calling to find out if someone from Neurology would be available at the ED, so I don’t waste my time, left me with “You have one of 2 choices, go to the ED or speak to the Healthline nurse”.  (Abrupt and unwilling to budge, was the tone).  I opted to speak to the nurse.  This, in itself, felt like a rehearsed script from Google with the questions only too familiar to me.  All the signs and symptoms I have read countless times before, things I needed to be aware of with the recommendation to seek medical help.  I ran through it all with her, was advised to get myself to the ED within the next 6 hours and reassured that someone should be on call from Neurology (because she worked as a Neurosurgery nurse at this particular hospital a few years back).

So off I went, thankfully driven by one of my dearest friends.

I dread going to the ED, simply because the waiting times can be excruciating, especially when you feel like crap.  To my surprise, I was called in by a nurse within 5 minutes of arriving to check my vitals and get a rundown of “What’s brought you in today?”.  I made sure to tell her explicitly that I do not have a shunt but an ETV as she nodded her head, taking down notes and, 5 minutes later she verified what I had said but ended off with “They definitely need to review you…you know, your shunt”.  Ugh!  The number of times this happens is becoming increasingly annoying.  (It makes me wonder just how well they actually listen to you).

Running vital checks, she tested my blood sugar levels and (to my surprise), I instantly got bumped up the list.  It was 3.0.  Probably because of not eating for a few days…

  • Then, the magical words which inspired today’s post.  She hurriedly left to fetch a little case and said: “As per protocol, we are to give you these two sachets to drink, retest after 10 minutes and continue giving it to you until your levels improve”.  (A handy sticker with directions posted clearly on the inside of the lid).  The handover to the ED nurse was done with strict instructions to continue this regime and end it off with a biscuit once I’d had 6 of these little-bottled sachets.  I protested a bit when we got to the second lot of drinks and refused the biscuit (My appetite was non-existent for the last 3 days) – but, I was promptly reminded each time that it was their “protocol” so I was required to follow.

The rest of the time was spent wasted, in my opinion (in a nutshell):

  • 6 attempts at finding my veins for bloods and fluid transfusion (I still don’t know what they were testing for).  Distracting myself from the pain of that needle going into my hand with thoughts of a sunny island resort or the nurse tapping on her keyboard outside my cubicle (a needle in the hand is the worst in my opinion).  I decided at that point, I absolutely hate needles…period!
  • An allergic reaction, with red bumps up my entire right arm, to the morphine injection (followed with “Oh, I’m so sorry that’s happened).  Though, who knew especially since I’ve had morphine injections before…
  • Explaining the reason for my visit (again) and consulting with the ED doctor (an energetic girl probably 15 years younger than me), who seemed quite pleased with herself after doing a basic neurological check.  Listening to her complain later on at the nurse’s station questioning why a GP had referred someone back to them and how annoying that is.
  • Explaining yet again to one of the consultants why I was there (her body language said she was irritated/annoyed at being there).
  • A CT scan, which I more than once explained was a waste of time in someone with an ETV, was met with “You’re probably right but…ED doctors are unfortunately limited in what we can request so we’ll do the CT just to be sure”.
  • Transferred to the short stay unit where I was given a transfusion of some pain meds which spaced me out till I fell asleep within 20 minutes (probably the best feeling of the whole trip).

Later…the cherry on the ED cake

  • Someone from the Neurology team came to see me with a “What’s brought you in today?”  (Seriously! How many times does one need to do this?).  I explained how my spine was paining which is different from any other time before including waking up with a headache in the morning.  That my symptoms have been a build-up over the last couple of months and I had done all I could possibly do to make sure it wasn’t something else.  And, after all that, he nods his head, performs the same neurological checks and says:

You’ve been here quite a few times…Your scans look fine and we can’t find anything conclusive for your symptoms”.  He agreed that a CT won’t really show if the ETV is working but continued to say “I don’t see any signs for immediate concern so maybe we can look at ordering an MRI down the line should you experience any further problems”.  When I told him that I had contacted a surgeon in another city as a last resort since no one locally seemed willing to help me, his response was “Well, let us know if we can be of assistance to the other surgeon”.  I told him, if only they would say “We’ll have a further look and do the MRI here, to make sure the ETV is patent, I’d be OK with that.  I have a family to think of but if it was only me, I’d say to hell with it all!”.

No…no…we don’t want you to say that.  It’s complicated…you know…Hydrocephalus and all of this…” he gestured with his hands.  Excusing himself, I discharged myself immediately unsure of what my next steps are.

Where’s the flipping protocol!?

For me personally, it would be awesome to see a change in protocol when someone with Hydrocephalus presents at the ED.  Admittedly, there are many conditions which need the same kind of attention however, this post is not about those conditions.  I’m also not saying it requires special attention or is more important, however, as someone who has this condition, it would be great not to be dismissed or speak to someone who isn’t clued up enough about the condition.  I’ve said it before and I’ll say it again, I’ll have more respect for you if you tell me you don’t know and actually listen to what I have to say.  Moreover, doing an unnecessary CT scan and wasting that time, resource and whatever else returns revenue to the hospital on that piece of equipment, especially when you know it won’t give you any valuable results, is a downright shameful waste.  Protocol around Hydrocephalus patients needs to include swift action, getting Neurology involved sooner rather than later and ensure you tick all the boxes before sending a patient on their way.  Anything else to ascertain the root cause of their symptoms should come second to that.  More importantly, it’s about upholding the oath, remembering as I have to from time to time, that you are dealing with a human being after all.

But hey…I’m no doctor, just an obviously disgruntled patient.


  • Karen DeBonis

    August 7, 2018 at 9:38 am Reply

    I am fuming for you! How incredibly aggravating.

    • Skyewaters

      August 7, 2018 at 8:43 pm Reply

      The worst part is, I’m starting to wonder if I’m not just having phantom symptoms because SURELY the doctors MUST be right.😫

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