Hydrocephalus: ICP Monitoring results leave me feeling “conflicted”

Hydrocephalus: ICP Monitoring results leave me feeling “conflicted”

I’ve waited more than two weeks to hear about my ICP Monitoring results and eventually assumed that “No news, is good news”.  And, as it turns out it is indeed the case.  I should be relieved and happy, to say the least.

But…I have mixed emotions…

I requested a printout of the actual Monitoring results (which I received today), so I can have a record and see them for myself.  The surgeon mailed me a day or two ago saying the “base line pressure is between 5 and 10“.  Looking at the printout, that correlates.  However, I know for a fact that most times I looked at it, it was either below 5 or over 15.  I can also see this on the printout with various spikes up to and even over 20.  (If I could have stared less at that machine at the time, I would probably not have noticed it.  I guess it was a case of knowing that the output is of importance and wanting to know for myself that kept me staring at the screen most of the time.  Also, there’s not much else you can do aside from sleep…)

The readings certainly make me question the relevance of the spikes and even the ones below 0.  I wish I knew how to interpret the printout with certainty…

But, given the surgeon’s result of “nothing to worry about”, I guess I need to move on.

The results leave me with one of 2 outcomes:

  1. A positive result of high pressure would mean further surgery to implant a shunt.  However, if I were to have surgery, it would inevitably mean I come back “home” and have to rely on the very doctors who refuse to help me, should the shunt present any problems.  Since I have no trust in their abilities and, I don’t think that’s going to change any time soon, I’d say it’s worked out for the best.  Especially after they literally refused to help me and discharged me from the Emergency Short stay unit with “Suspected depression“.  In my defence, I’ve been deeply depressed before (with good reason) so, I can say with utmost surety, I am certainly not at this stage in my life.  On the one hand, it would have been great to have a positive high-pressure reading because then I could say, “See, I told you something’s wrong”.  But, since I “don’t need surgery”, I, unfortunately, don’t get the satisfaction thereof.
  2. The “normal” pressure result means no need for surgery but, maybe exploratory pain management treatment, as he suggested.  This option doesn’t sit well with me either because that would mean I see a Neurologist and my experience with them, over the last couple of years, has led me down the antidepressant path – And, it’s one I’m not interested in.

So why do I feel conflicted?

Well, it’s disappointing, to say the least, because I don’t feel like I’m any closer to figuring out what caused my symptoms.  What gets me wondering, aside from the pressure readings, is:

  • What if time really is of the essence when trying to figure out if there’s high pressure?  The time it took to do the actual Monitoring was almost a month after I felt unwell.  I suspect it’s very possible that things settled down during the time, leading up to the actual surgery.
  • Also, when you’re in the hospital hooked up to the monitor, it’s just not the same as when you’re at home or work going about your normal daily activities.
  • Then there’s the possibility of ETV closure happening slowly over time, gradually if you like.  I say this simply because it’s not the first instance, there’s been a few and, I know it won’t be the last.

The only thing I know for sure is, I did not imagine any of the symptoms I had a few weeks back.  They were real but at the time, when it mattered most, no one did anything to find out why.

What strikes me most about these experiences, which are not unique to me, is that these doctors literally expect us to be puking our guts out, unable to converse like a normal person or even as far as being comatose before they will react.

I’m staying in my corner, supporting myself and saying “Yes, right now you have every right to go “Oh shite! What now?… Just don’t give up”.

I don’t have that answer right now and I’m literally back at square one.  Feeling anxious and scrambling for clarity and a way forward…I am NOT insane and I’m NOT making any of this crap up, I have better things to do with my time. Hydrocephalus sucks and right now, it feels like it’ll always have the upper hand but, I refuse to lose.

Fighting to be heard just got a little harder in this lonely arsed corner of the world but, I’ll be damned if it’s the final straw.  Maybe I’ll consider the medical marijuana suggestion, jokingly made by one of my colleagues today and, just increase the dose as I go.

Now there’s a thought…

Published by Skyewaters

I blog about Hydrocephalus to give a voice to the millions (if not billions) of people around the world with this condition NOT disease.  As much as these experiences are unique to me and my family, I’m sure others have experienced it too.  My aim…to shine a light on it and raise awareness – simple and challenging at the same time but worth it!

8 Comments

  • Karl Rothko

    September 14, 2018 at 8:44 am Reply

    Yes Celeste, I suspect ETV closure, are behind your symptoms. Keep a weary eye on it. Do a diary of your day symptoms. Don’t dismiss anything as this or that. Act if you have to, need to. Thinking of you. Best of luck.

    • Skyewaters

      September 14, 2018 at 9:00 am Reply

      Thanks Karl. I done that before and gave it to a Neurologist, tracking everything. She didn’t even look at it and ended our consult with “If you don’t want to take the antidepressants then there’s nothing else I can do for you”. Then she admitted that they “don’t know what to else to do”.
      One of the main reasons why I blog is to keep track as well since my memory’s not that good (as you would know).

  • Bronwyn

    September 14, 2018 at 4:54 am Reply

    Like they would say In South Africa, “Eish Mama” and scratch their heads and walk away

    • Skyewaters

      September 14, 2018 at 8:57 am Reply

      Triple “Eish!”

  • Pippa Taylor

    September 13, 2018 at 9:31 pm Reply

    I was going through something very like this years back; I just knew something wasn’t right, but because the scan they did showed all was well, they told me it was ‘conversion disorder’. About a month later I went into a coma and had to be rushed into surgery. Hope that you keep well!

    • Skyewaters

      September 14, 2018 at 2:11 am Reply

      That’s terrible! The one thing I’m probably trying to avoid 😔

  • Karen DeBonis

    September 13, 2018 at 10:13 am Reply

    I understand. Hearing “nothing’s wrong” doesn’t always feel as good as you’d think.

    • Skyewaters

      September 13, 2018 at 9:03 pm Reply

      Especially when you feel something’s wrong…

Leave a Reply to Skyewaters Cancel reply

This site uses Akismet to reduce spam. Learn how your comment data is processed.