Hydrocephalus : Have you ever been told you don’t have it?

Hydrocephalus : Have you ever been told you don’t have it?

Have you ever been told that you don’t have Hydrocephalus after another doctor told you that you do, only to get told by the next one that you, in fact, do have it?  Or, that your headaches are caused by an overuse of analgesics?  Or, that it’s caused by stress or life changes you might possibly be going through?  My all-time favourite (not) would be alluding to the fact that it’s all in my head (nice pun).

I have been told this among others things and quite frankly, it confuses the crap out of me.  I know for sure how I feel when my Hydrocephalus affects me, there’s just no mistaking it.  I also know that I do forget the exact sequence of events when I need to explain said symptoms to a Neurologist/Neurosurgeon, especially when the appointment is a few weeks/months away.  As mentioned in my last post, this is one of the reasons why I blog about it, so I can reference back if I need to.

If there’s one thing that I’m sure anyone with Hydrocephalus would love to hear (more than anything in this world), it would be that they DON’T have Hydrocephalus.  I would love for doctors to be right in diagnosing me with phantom symptoms.  But, I cannot in good conscience deny the pain or agony I’ve felt over the last couple of years, at various times.  I also cannot deny the fear I feel because of the doctors I’ve consulted with over the years, with words like:

“You could go blind if left untreated” – This was the main reason I had my first shunt in 2007, reluctantly done because the surgeon didn’t believe (conclusively) that I have Hydrocephalus.  But when the tests came back with Aqueductal stenosis and raised pressure (even after examining my eyes showed him “nothing to be concerned about”).  And, after consultation with 1 surgeon, a neurologist (2nd opinion) and a different neurologist (3rd opinion – he was by far the most classic, simply because he put his “reputation on the line as I was suffering from an overuse of analgesics and he would cure me in 6 months“.  He insisted on doing a lumbar puncture to ascertain my pressure level after which, he left my hospital room faster than a newbie can say Hydrocephalus.  But, not before uttering these words along with the cherry on the cake “you could sue all three of us and the hospital if we don’t do this operation“.

Any issue with my eyes gets me all tense because of this.  It could be anything really, from sitting too long in front of a computer or not having had enough sleep the night before.  But, because I’ve heard these words, I remain vigilant.

“You could go into a coma” – Newly added into my Hydrocephalus vocabulary a few months back, along with being told I have slit ventricles.  This is probably one thing that freaks me out more than anything else at present.  Every time I have an episode of sleeping the days away, feeling listless and not being able to will my body to respond to daily household chores, I worry.  I also fear going to sleep during these times because I’m scared of not waking up.

“May cause serious injury or death if left untreated” – The words on my medical alert card…a nagging reminder to be conscious of what I’m feeling or going through.  This is probably the main reason why I continuously go in search of a medical professional to help me when I need it the most, despite not having any joy (with the exception of 1 out of 9 thus far).

Is it simply a play on words, something that needs deciphering or being misinterpreted by me?  Or, maybe I’m being too analytical about all of it (it’s in my nature).

At the time of writing this post, for example, I feel so much better than I did a few days ago (how long it will last, I don’t know…it could change within the hour – but I’m grateful for this second/minute/hour/day).  I myself would say there’s nothing wrong and cannot even comprehend what I felt at that time.  It certainly makes me think I’m going loopy…

Whatever it is, there would be nothing better than to get told (150%) that I don’t have Hydrocephalus and that these last few years have been nothing but a bad dream.

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