Hydrocephalus 10…Celeste 0

Hydrocephalus 10…Celeste 0

I’m not a very sporty person (evident from my physique)…I kid you not.  However, in any competition I find myself up against, I will admit to being a bit of a sore loser.  I might not be an extremist in this regard but I do feel the pangs of defeat a bit more than I would like to admit at times. Admittedly, I find it spurs me on, especially when I am outnumbered against all odds, to get up and fight again.  Just a few days ago, I faced exactly this kind of challenge and today (5 days later), I feel a bit stronger to put my fists up again.  Fists that aren’t as tightly clenched as I would like them to be, in fact, my arms feel a certain amount of weakness along with the rest of my body.  I have no appetite and just feel tired all the time…

When I woke up on Thursday morning at 5 am with a familiar pain in the back of my head, I knew before I opened my eyes, that it was not going to be a good start to the day.  I struggled to fall asleep again as I tossed and turned trying to find a comfortable spot but more importantly, I kept an eye on the growing monster inside my head.  I propped my continental pillow up behind me and lay at a 45-degree angle, silently begging the CSF to flow away from my brain and stop causing the pressure I was feeling, however, the pain wouldn’t subside and nothing helped.  As if to add insult to injury, my tummy pain returned with vengeance as well on the train to work.  Barely making it to the station, I was grateful for the public toilet (as one can be under the circumstances), where I could get some relief from nausea in the pit of my gut.  The day is much a blur as I ambled through it, trying to just keep my limbs moving while the war inside of me (unseen to those around me) continued to wreak havoc.  Half-smiling at a colleague who, obliviously and unknowingly, beckoned me to smile “because life is not that bad” as I “looked so sad and angry“.  Oh, how I wish he only knew…

I used some of the meds prescribed to me for a migraine 3 months ago by a Neurologist, whom I am yet to see again this coming Thursday for my follow-up.  Needless to say, they did not help and since I’m only allowed 4 a month and 3 in a 24-hour period, I had to take the next best thing (anything at hand).  Throughout the day and night, the headache just kept on pounding away, nothing I had done, no medication I took, brought any relief whatsoever…I felt doomed.  Like a thief in the night, it pounced, with me unaware and defenceless against the tired and the pain…I was caught off-guard.  It started throbbing behind my right eye and I noticed that by the next morning from around 2 am and waking up every hour after that, a hammering right in the centre of my head.  Lying on my right side was just plain out of the question because it ached behind my eye and also throbbed inside my ear.  In fact, my whole right-hand side, felt weak from my head, over my shoulder, arm and down to my fingertips (this was VERY new).  I hadn’t faced this kind of fight in a very long time and started wondering if I had somehow jinxed myself for thinking it out loud just a few weeks before…

Friday was no different, in fact, it felt worse but off to work I went and by midday, I think I took my second last blow to the head and gut.  I felt incredibly nauseous but the pain inside my head was worse, constant and that all too familiar throb behind my right eye that has me wishing I could just pluck my eyeball out myself!  Off to the GP, I went who in turn spoke with a Registrar Neurosurgeon at the Hospital who advised I come in and see him.  I was grateful to her for getting me one step closer than I have ever been on the fruitless journey to the Emergency Department and a bit hesitant to go at all.  However, I gave in and convinced myself that maybe this time would be different…just maybe “because I know how serious this is and I know that if my ETV is closing, I don’t have the luxury of time on my side.  And, yes I’m scared…I’m very scared“.  After dictating word for word (upon her request), on what to write in the referral letter, that “I need an MRI with flow study because a CT scan will not show increased ventricles as I have an ETV and slit ventricles“, he still proceeded to do a CT scan, much like my last experience, after doing all the normal neurological checks. De Ja Vu!

But…and this is a big but, he had a plan!  In 2 weeks time, I would have to come back for an MRI if the CT scan did not show any evidence of increased pressure.  Now, I can’t help but wonder if my little old brain is going to play nice and show the audience exactly what’s going on underneath this skull of mine or if this is going to be a repeat showcasing of the shy and non-existent little teaser.  Furthermore, my heart absolutely sank when I overheard said Registrar talking to the very surgeon I consulted with previously having uttered the words “There really is nothing else that I can do for you…“.

It reminded me of a recent conversation with a Hydro mum who pointed out that being reliant on a public health system, you simply don’t have the luxury of choosing who will treat you, especially not doctors who have dismissed or mistreated you before, or worse…you are at their mercy.

I was sent on my merry way and have been fighting the pain monster inside my head for just over 4 days straight (This is a first for me…Oh! That’s right, I’ve mentioned it already), though Saturday was the final blow that knocked the wind out of my sails and had me down and out.  I was left emotional and crying like a little girl in the corner, licking my wounds like an animal and ready to throw in the towel.  There wasn’t even a few minutes relief in-between…And, now I feel like a person with a very bad hangover that won’t go away.

I just keep praying that I’ll have long enough to recover before the next fight begins…whichever way that goes, I’m up…with my fists in the air and ready for whatever comes my way.  I might not win these fights but I feel stronger knowing that getting back up is half the battle won…



  • Karl Rothko

    June 22, 2019 at 10:38 am Reply

    My last surgery was 40yrs ago this year. I give myself a 10 out of 10. The last surgery was perilous not due to shunt complications but due other complications not expected. Absolutely dire. No shunt issues since.

    • Skyewaters

      June 23, 2019 at 11:04 am Reply

      That’s a long stretch Karl! We remain thankful for the surgery free days/weeks/months/years we get :-).

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