Diagnosis with…no clear direction, guidance or full disclosure

Diagnosis with…no clear direction, guidance or full disclosure

How many of you received your or your loved one’s Hydrocephalus diagnosis ticking one, all or more than one of the boxes above?

When I was diagnosed, age 29, the word Hydrocephalus was entirely new to me.  To say it was foreign, would probably be an understatement.  I went through that time, receiving my diagnosis to beyond, post brain surgery #1, on autopilot.  The surgeon did not tell me about there being 2 treatments of choice, namely a shunt or an ETV.  He did not explain the different types of shunts either.  In fact, he tabled a VP shunt from the word go presumably because it was a good choice for me.  Being a Hydro virgin, I accepted what he was telling me and agreed to have the procedure.  He did not divulge the fact that shunts generally fail within the first two years, or much less at any given time.  He made it seem so “easy“, I would have the operation with one or two follow-ups but after that, we would be done unless there was a significant issue (something, he did not anticipate).

This would also be the reason why when my shunt was busy failing, I did not have the words to describe it as such.  All I knew (and vocalised), was that “something doesn’t feel right”.  I didn’t understand about failures and how your body reacts to them.  I did not know that there were some serious symptoms, which should not be ignored and required medical intervention.  All I knew was, I was all alone on this journey and I had absolutely no one to turn to for help.  There was no other option for me…I was probably facing a lifetime of these unknowns (I thought helplessly).  I wasn’t part of any of the groups on Facebook (yet), I hadn’t even thought about looking for support at that stage.

After seeking countless other opinions, I stumbled across the surgeon who would introduce yet another piece of my Hydro puzzle.  Endoscopic Third Ventriculostomy (ETV), a term my husband who attended the consult before my first brain operation, had also not heard.  At brain surgery’s #2, 3 And 4, I was comatose, in no position to make the call for myself after having just had 2 shunt revisions over the last 2 days.  He had to make the call to do the emergency ETV, having just returned home after visiting me at the hospital when the surgeon phoned him.  The replacement shunt was failing…the surgeon scrubbing in and, I was being prepped for surgery – the decision needed to be made within the hour.  A friend’s frantic Google search gave my husband some knowledge of what I was facing but still…it wasn’t quite enough and still confusing.

Nonetheless, he gave the OK! (Trusting only as one can, at a time like that).

My initial programmable shunt (a Medtronic Strata) was removed and replaced with an Orbis Sigma.  I only know this after reading my hospital file a few months back.  But, now I know that these 2 shunts are probably not a good fit for me.  Having been told subsequently that if my ETV fails, I will become shunt dependant again, I figure this is good intel to have.

On a different note, I think this is a problem in other areas of the medical profession too.  As I’ve mentioned before, I’ve been diagnosed with an autoimmune disease – Graves’ disease which has caused Hyperthyroidism.  Once again I’ve been left in the dark to fend for myself or find out as much as I can about it.  More importantly, I want to know what I can do to help myself heal and get better.  I had a good think about it and I’d say the GP who delivered the diagnosis and then passed me on to an Endocrinologist who in turn has left me to my own devices, after carefully monitoring my blood work and lowering my medication, is less than ideal.  I’ve come to the realisation that I need to own it all…be a nag and keep on top of what the next step is.  I know regular blood tests are required to keep track of my TSH levels, so I make a point of asking “So when should I go for the next one?”.  If their interaction with me was a bit more transparent, I would not be left running myself batty with Google searches.

Oh, the dreaded Google searches some people swear by and others just avoid like the plague.  If I had to be honest, the internet has probably been my one link to sanity in this regard.  It’s clear to me that I need to be watching what I eat and change my diet, I’m still a bit lost but I think I’m managing OK.  Note, however, at no point did either of these doctors tell me to watch my diet (especially my intake of iodised salt), what to cut out or increase, nor did they advise I see a Dietitian, Naturopath or any other person who can guide me in terms of what to eat.  It’s the least I would have expected for their exorbitant medical charges.  *Sigh…*

Besides, what else am I to do?  For the time being, I cling to my Google searches because the breadcrumb trail I’ve been following up till now, despite leading me down some dodgy paths, has been the only link to sanity I can afford.

I could even go on and on about both this condition (Hydrocephalus) and disease (Hyperthyroidism) being life-threatening and, how that impacts the way I view it or react to it personally, but, that’s a post for another day.

So…Why is it that doctors don’t discuss important info like this with you?  Why do they choose a certain procedure?  Why that particular make of shunt or even what the outlook will be?  Who knows..?  I for one, would much rather know all the details and be prepared than getting caught off-guard the way in which I have countless times before.  I’d rather know all possibilities, regardless of whether something will happen to me or not.

My advice to myself and anyone reading this, educate yourself and read as much as you can.  Use discernment when it comes to Google searches and weed out the irrelevant from the relevant.  Look for the common trend and do what feels right for you.  Go with your gut and listen to your body because you are the only one who knows how you feel.  Besides, if you were running your body like a multi-billion $ company, wouldn’t your priorities bring out the tyrant in you to ensure it’s success?

Be your own voice and advocate…

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