Hydrocephalus : A world filled with “Could it be..?” or “What if it’s..?”

There’s something that gets me each time…the realization that my world is filled with “Could it be..?” or “What if it’s..?

When I got my diagnosis of Hydrocephalus and subsequent shunt placement, these questions were probably the most commonly asked.  If I felt anything out of the ordinary, the first thing I suspected was my shunt.

A common cold…”Could it be my shunt blocking up?”  Falling pregnant and all the symptoms which go with that, (before you actually know that you are in fact expecting), “What if it’s my shunt?”  It could be anything really…

Then, I had my ETV done and even though it’s coming up to nearly 7 years since my operation, I’m reminded of the number of times I’ve asked the exact same questions.  It’s an endless spiral that leaves me feeling helpless and gasping for air at times.

I can’t even remember what life was like before all this started.  All I know right now is that questioning whether or not my ETV is still open, is the number one issue for me.  I wrote about this a couple of times here and here.  I made “peace” with the situation as best I could after my last consult but even though I pushed it to the back of my mind, it still bugs me from time to time.

Then, this past Sunday, I had another sleepy day after being woken by the same nagging dull pain I’ve had a couple of times before over the last few months.  My body just refused to work with me and every part of me felt limp.  I’ve also been dizzy, nauseous and struggling mentally (more than before).  But, more worrisome than this, I had pain in my spine, which has thankfully subsided.  Curled up on the bathroom floor at work in one of the cubicles, overcome with severe nausea and dizziness, I made my final decision.  I decided to hell with all this, I refuse to wait until I go into a coma, I refuse to subject myself (or my family) to a stressful event such as that.

Then, there’s the question leading on from the two at the topic of my post…”What am I going to do if it is?”  I’m not talking about seeking medical help…at least that’s not the only thing.

I’m talking about which option do I choose.  I’ve been told that I might face being shunted again and I’m not 100% sure how I feel about this.  I know what a hard road it’s been to get the help I desire from a surgeon…I’m still on it.  I anticipate that my struggle will just be increased and I will once again be left feeling helpless and on the brink of insanity due to a lack of a medical lifeline.  Left contactless and all alone…

My sleeping episodes have me worried and after months of going without any symptoms, I’m once again asking the questions above.  What if I don’t get the help that I need?  Could it be that I’m slowly slipping into a coma?  What am I going to do about it?  Some of these questions I won’t have answers to until it happens and unfortunately, in that situation, I won’t be in a position to do much (if anything) about it.

I’ve had it with specialists who pussyfoot around the issue and exercise caution by not opting for surgery.  (Double-edged sword…at some level, I do understand their reluctance to operate – contradictory, I know).  It’s not an easy decision to make but I’m scared out of my wits past the point where I have now decided to “ask” them to do it.  Just go ahead and redo my ETV…

And, as much as I’m against having a shunt again because my follow up care might be non-existent, I’m considering it.  I know what it was like when I had my shunt with this kind of care.  But, weighing up the options, I don’t really care which treatment option is provided…I will have faith and trust this much.  It’s scary as hell but I feel like I have no other choice.

In record time, I secured an appointment with a surgeon in 5 days time, after seeing my GP yesterday.  What the outcome will be…I don’t know.  Will the sleeping episodes continue and will the struggle to stay awake and alert leave me before then?  I don’t know…

Will I be able to be like a duck for the next 5 days?  I don’t know…But, I sure as hell am going to try.

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!

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