Hydrocephalus : What other choice do you have?

Hydrocephalus : What other choice do you have?

I’ve been “lucky” to not have daily headaches or symptoms related to Hydrocephalus.  I have the odd episodes where I’m just knocked down physically and take a few days to recover.  This can be anything from dizzy spells, nausea (sometimes vomiting).  There have also been times where I’ve had headaches that lasted a few days after waking me up at 3 in the morning and not easing up until after a couple of days.  These episodes, as bad as they are at the time, are bearable in the sense that I don’t have it on a daily basis – unlike others, which is why I consider myself “lucky”.

However, today, I woke up with the weirdest dizziness that hit me as soon as I lifted my head off the pillow.  I thought maybe it’s just me getting up too quickly and sat back down on the bed, giving my body time to adjust.  That didn’t help…

After laying back down for a few minutes, I forced myself to get up because I had to get to work and the kids to school.  I considered calling in sick but what good would that do me, besides, if it goes away after an hour or two then I would have wasted a much-needed future day of sick leave.  (The usual weighing up of How sick do I feel now? vs How sick am I likely to feel at my worst?).

Walking to the bathroom, I felt like I was walking on the moon.  (No, I can’t physically relate to it but used my imagination from what I’ve seen on TV – Call me Nellie Armstrong).  Everything felt light: My head as if it was disconnected from my body and floating in space, my arms and legs couldn’t feel the gravity nor the normal pull thereof but just felt light-weight and “weird“, for lack of a better word.

The thing about these episodes is that it’s not quite that simple as going to the doctor.  There are a few obstacles and realities which keep me as far away from them as possible.  The cycle is as follows:


  1. Calling to see the GP (because this is your first point of contact with the medical system)
    It usually takes a few days before you actually get an appointment to see them.
  2. Going to the Emergency Department at the hospital
    I could write a book on this option and just how useless, infuriating and helpless I feel once they’re done with me.
  3. Make an appointment privately to see a surgeon I’ve consulted with before
    Oh, joy!  This is a rabbit hole, I truly don’t want to explore anymore because it’s just become tedious and emotionally draining.  Besides the directive is clear from medical professional #11 – I’m not “in a coma” and I “look fine” so there’s nothing he can do for me.

Then, there are the well-meaning outsiders who suggest “Why not try going back to your home country or even India? (where “doctors are truly better than here” – it’s very tempting to believe this statement).


These points right here…that’s where reality hits me.

  1. Financially, I am not in a position to go back home.  Even if I could afford it, I can’t just walk into a doctor’s room and make an appointment.  Most of the surgeons, before #11 who would not help me either, are there.  The one and only doctor who listened and helped me has left the country and I have no idea where he went.
  2. Then, there’s my internal fear and probably THE biggest.  With all the memory issues I have thanks to this condition and subsequent brain operations, I cannot possibly forget my experience of brain operation number 2 which turned into 3 and 4 over 3 days, comatose for a week in ICU, a further week in hospital with Physio to relearn the basics and a further month off from work to recover fully.  The reality of that time scares the crap out of me because once you go under, there’s no guarantee of the outcome…it’s a wait-and-see situation.

Maybe if things were different, I would give it another go but, the reality staring me in the face is just something I am not in a position to ignore.

So, to my well-meaning colleague, I said: “The last surgeon I consulted with told me that most people he sees are in a coma and I look fine to him.”  She looked at me in stunned silence.  So I smiled and continued saying, “If there’s one thing you need to always remember about me, it’s the fact that I don’t fear death.  I have to come to work because staying at home when I feel unwell is not going to get me anywhere.  I have a family to help support and thankfully I can pace my workload to get the most I possibly can done.  I’ll be fine because I have to be and besides as long as I’m breathing…I know I’m OK. I’m not one to feel sorry for myself and all this is just part of what life hands us…sometimes lemons, sometimes grapefruit or sometimes it might even be a sweet orange”.  Unfortunately, my colleague left in tears but not before I gave her a hug because she looked like she needed it.

This is the reality of living with this condition, a reality that most of us face so I don’t for one minute think that I’m unique in this situation.  I’ll just keep the faith and keep praying that one day we’ll all be rid of this xxx

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