Hydrocephalus : Recovery in progress – Investigations ongoing…

Hydrocephalus : Recovery in progress – Investigations ongoing…

Don’t you sometimes wish you could just hang a “Recovery mode in progress…investigations ongoing” (or similar), sign around or near you?

Since starting my website, I’ve tried to do a blog post at least once a week, sometimes more because I’m passionate about creating awareness on this condition.  But, I haven’t been feeling well for the last 2 weeks and have fallen into the “Is it Hydro or something else?” Wheel of fortune game.

Most games are fun and bring with it some sort of pleasure…this one though…is far from it.

If I had to put it into perspective for myself, I’m not sure what I think is going on any more – I’m medically complicated (Go figure!).  As I’ve said before, a headache has me on alert…inwardly silent away from critique of those around me.  Loss of appetite (eating makes me nauseous – so it’s a forced one day a meal regime at the moment), extreme loss of weight,  numbness with a tingly sensation down the entire right side of my body – head to toe and a constant feeling of something stuck in my throat.  I tried the approach of working it backwards and am currently having my Thyroid investigated, just in case.  Nodules seen on an ultrasound a year ago have increased in size – Oh joy! (NOT).  But, we play the waiting game till next week after a repeat blood test, followed by a Fine needle aspiration.  I remain feeling crappy while I wait for the days to pass – It’s not happening quick enough.

Stress is undoubtedly high with all this uncertainty and, doctors throwing the word Cancer around one too many times, certainly doesn’t help.  (Please Lord just not that!),   

It probably isn’t anything to worry about but who knows…  

Then there’s the unexplained nagging pain (not too painful), enough to wake me from my sleep happening more and more.  The source of which, lies in the very spot where the hole in my Third ventricle has been perforated (invisible to the naked eye).

Doctors have told me I shouldn’t be able to feel anything in this area…hmmm.

How can I possibly ignore something which makes itself so known to me – loud and clear? 

How many times do I have to betray myself and disregard what my body is telling me? 

How much more crazy do I need to appear to the medical professionals who dismiss me because my MRI shows the patency of my ETV?

How do I ignore the fact that ETV Failures, just like shunts, can and do fail…outside the norm?

At this point in time, I do hope it’s my Thyroid causing all this havoc.  The easiest solution would be to just remove the damn thing so I can get on with life!

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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