Hydrocephalus:  The tides we face…

Hydrocephalus: The tides we face…

Anyone who knows me, knows how much I love the ocean.  A beach house, right next to or on the sand will be my wish come true.  With that said, I don’t for one moment take for granted the powerful beauty it possesses.  However, as much as I love the ocean and it’s beauty, I have a level of fear, but mostly, respect for it too.

A few weeks back, my family and I went to spend a relaxing day at the beach.  Visiting my happy place makes all the difference to my soul…

I got to thinking about my last visit to the Neurosurgeon and my subsequent “epiphany”, after doing this chart.  

What I realised, is that I very well may have confirmation of intermittent ETV failure, pity I didn’t start tracking it earlier.  Each occurrence (shown on the left), where I felt ill and, majority of the time, ended up at the Emergency Department, being sent home with no help or explanation for my physical state.  Reading the symptoms of what I was feeling, taking it all into account, there’s a definite trend and Nothing else explains it…This probably stands out more for me than anyone else, that’s clear enough to me.  And…that’s OK

Having this new perspective means that, the next time it happens, I’ll definitely be looking at ETV failure, as the cause and, head straight for the hospital.  (I may even print out the chart for emphasis).  I’m hopeful that being in a new country and, not having to deal with the same biased Neurosurgical department at the hospital, will work out better here (fingers and toes crossed).  I’m starting with a clean slate, one where none of the medical professionals have had time to develop a pre-conceived notion of me. (I know how that makes me sound but…until you’ve been fobbed off and disregarded for an invisible condition, this’ll be my stance).

Knowing I now have a surgeon who is thinking outside her textbooks, makes all the difference too.  So many before her have brushed my concerns aside and made me work hard to be heard. 

The amount of self-doubt I’ve developed as a result, is endless…

Driven by fear, after our appointment, I didn’t want to wait until I have my next episode, for the surgeon to act.  I hoped she’d be in touch by now but I also knew full well, that she might not be.

How often don’t we face these moments though?  Any person with Hydrocephalus (most anyway), knows there is no cure and, the last surgery you had, doesn’t necessarily mean you won’t be back in the operating room.

It’s like facing the waves at the ocean, going in deeper and deeper, despite them getting bigger and stronger.  The more you get ploughed down, the weaker you become to the sheer force and pressure, needing time to recover.

Personally speaking, the ocean draws me closer and closer.  That being said, I’m confident enough in the water but, I’m no Olympic swimmer.  I don’t underestimate the power of the ocean and know it can take me at any moment, if I go too far from the shore.  However, I’ve faced a few waves where I realise, too late, that I may just be in too deep.  Having to make a split second decision to either dive under it, turn my back on it and get knocked down with force, or try and make a run for the shore. 

Just to face the next one…(Adrenaline pumping moment).  

Having done all of these, the ones where you dive head first but don’t come up quick enough, eyes closed and get knocked down by the next wave, has left me breathless at times.  You sort of realise there’s a point of no return and, all you need to do is hold your breath long enough, or stay under till the wave passes over you.

Much like this, is how I feel right now…

My options:

I could see a Neurologist about managing my migraines/headaches and pay a fortune on top of all the $s I’ve already forked out since March. I don’t see the point…and, quite frankly, can’t afford it.

Or

I could wait for the next wave to hit, knowing fully, the possibility of it ending up like my last operation.  Getting continually knocked down by the subsequent waves, having had 3 operations over 3 days, a week in a comatose state, and re-learning some basic skills. With just over 2 weeks in hospital, a month off from work to recover and very little memory of what actually happened…

Admittedly, I always refer back to this time, and most would probably tell me to, just move on.  The thing is, I don’t need to move on because it’s not holding me back.  It’s like putting your hand in the fire, getting burned and remembering not to do it again because, you know the feeling of being burnt (every time you’re near a flame).

It also, very well, may be like my first shunt operation, where I was in and out of hospital, a few days later.  I may even be lucky enough to go a few more years and add to the 9+ years since my ETV was done.

Regardless, I’m choosing to face it head on, and trusting that all will be well.  I can’t speak for every person with this condition but, despite being fearful, this is my norm – waiting for the other shoe to drop.  As long as I have prepared myself mentally and spiritually, I know this too shall pass.  Unlike the “wave facing” analogy above, you don’t get to walk back to the shore and choose whether or not you face the next wave.  With Hydrocephalus, you have to face each wave – it just depends on whether or not the tide is high or low, that will determine the size of the wave you must face.

My husband always tells me I’m not the sporty-type and, as true as that may be, (especially compared to him), I bet I’d beat him hands down in this.  It’s just another Hydro hurdle I need to cross…

What’s your Hydro hurdles been like..?  Are you facing your waves and managing to hold your breath long enough in-between?  Is the tide mostly high or, are the low currents enough to give you a much needed break?

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!

2 Comments

  • minionmayhem514

    May 20, 2019 at 12:04 am Reply

    To go with your beach analogy, our hurdles have been like watching someone’s reaction to the waves without being able to see the waves ourselves. Does she see a tsunami or is it just a new creature running on the sand?

    Sharing a personal anecdote regarding migraines-i went to a neurologist for mine and was prescribed a medication to help treat them as they happen (I know some are preventative but they have side effects). This prescription was then renewed by my regular doctor, who I see annually anyway. So I don’t have to see the neurologist unless I want to. I’m sure your situation is more complicated, as I do not have hydro, but I didn’t know my regular doctor could renew the medication. Might be something to look into. I was so happy when she renewed it because I couldn’t justify the money for the specialist.

    • Skyewaters

      May 20, 2019 at 12:19 am Reply

      I can completely understand how you feel in terms of not “seeing the waves”. Hopefully, in time, she will be able to relay it fully to you.

      As for the Neurologist. Thanks for the suggestion. It looks like they use Botox to treat pain but the initial consult would be just under $1000 (all inclusive). I’m not personally convinced that my problem is migraines. I have too few to warrant “treatment” for it, like someone who suffers with them on a daily/regular basis. If I thought otherwise, I’d be jumping at the option.

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