Hydrocephalus: I reckon having someone in your corner is better than the alternative.

Hydrocephalus: I reckon having someone in your corner is better than the alternative.

If you’ve been following my blog, you’ll know the challenges I’ve faced/am facing, just to be heard.  Being told at my last consult, which always feels like it’s the last, “We’re just not going to operate on you because, you look fine and your tests show that too“.  Going down the slippery slope after this is just so easy, you’d think I would’ve learnt my lesson by now.  Oh well, I think I’m getting better at it, in my defense.

That consult rendered so many feelings and reactions, some more negative than positive.  It left my husband and I in a space where, his stance with all I’m going through, is crystal clear & disheartening to me.  He sides with the doctors on this one, “Do you want to have more brain surgery? Because I don’t want you to!”  I’ve heard his protests before but can’t honestly say that I’ve taken it on-board.

Being true to my nature, I go in search of help…over…and…over again.  I can’t do much about the way that he feels but, in this instance (being the one living with an incurable condition) I have to be selfish.  That’s the bottom line.  No sane person would ask for brain surgery however, Hydro warriors (especially) are in a totally different league.  We might not like the thought of surgery ourselves but when it comes to self preservation and our survival, I think anyone in our shoes would do exactly the same.

So…this brings me to the point of today’s post.  I decided after that consult that no matter what, I refuse to feel helpless or give up.  I made an appointment with an Ophthalmologist to make sure there’s nothing untoward going on behind the scenes (the eyes are the windows to the soul and such).

The consult went well in my opinion and after getting the all clear, I feel a bit better and a bit more equipped.  I walked away, after having an eye, pressure, vision field test and complete scan of both eyes done.  However, I did not walk away empty handed.  The Dr told me that I could come back at anytime to have the tests redone, do a comparison and make sure everything is OK.  He said that the slightest change would be apparent and something no Neurosurgeon would be able to ignore.  There wouldn’t necessarily be a change at the time of an “episode” but a few days to a week before.  For my own understanding, I’ll compare it to a pressure cooker with boiling point being when the mother of all headaches strikes.  So…I would have to get checked out before this point…this to me is the tricky part.  However, it is Hydrocephalus I’m dealing with and, part of the “fun” (note the sarcasm) of having this condition is, it’s not meant to be predictable or easy.  According to him, my pressure could be building up intermittently but my body deals with it and then resolves itself, thereby eliminating the need to operate immediately.  This in itself, does not mean that there isn’t a problem.  I don’t necessarily know when I’ll have an “episode” because most times it catches me off guard…I guess my plan of action would be to become more aware and listen more closely to my body.  At the very least, I’ll try.

His empathetic response and confusion at the care I’ve received thus far and, the reluctance of the surgeons to do due diligence (a simple lumbar puncture for example), was beyond his own understanding.  Welcome to my world doc…

At least I have one person listening to me now…my “phone a friend” lifeline if nothing else.  And, quite possibly my trump card..?

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