Hydrocephalus : The pre-existing condition you wish you never had

Hydrocephalus : The pre-existing condition you wish you never had

Medical insurance/aid…a necessity or a nice to have?  You decide…

Most people I speak to nowadays, seem so blasé about their healthcare, a feeling I drool over for a split second.  They seem relaxed while spewing out things like “We have a free ambulance service” or “Our public health system will take care of me“.  My negative experiences have taught me some hard lessons, ones which make me shy far away from this kind of mentality.  I am not naive and am definitely a long way down the road from being ignorant or taking things for granted.

I’ll assume most countries have public and private care when it comes to our health.  I’ve experienced both and have my preference but that’s not what this post is about.  Nor is it about the fact that as a human race, our survival revolves around a money-making business that leaves me feeling sick when I think about it for too long.  Or, the fact that even though we pay the exorbitant costs, we sometimes get medical professionals who simply fail and let us down with the quality of care they provide.  Thankfully, there are those who do the profession proud and really are Angels who have our best interests at heart.

Lately, I’ve been thinking about two kinds of people.  The kids born with Hydrocephalus, who are currently on their parents medical and then anyone who starts out looking at their own private health coverage options.

I would like to pose a question to anyone who is currently on their parents medical.  This could be answered or considered by both the young adult or the parents themselves.  At some point, you will have no choice but to seek your own cover, assuming 18 years of age is the cut-off.  With this in mind, have you thought about what you are going to do?  Are you going to find your own cover with a different provider or are you going to continue on the current coverage you have with your parents’ insurer?  This is a bit of a trick question but there’s a good reason why so bear with me.

For anyone who doesn’t quite know how medical insurance/aid works.  

Any condition or symptom you have prior to signing up with a provider will be regarded as a pre-existing condition.  Most companies won’t cover you and some will cover your condition/s but only after 3 years of being a (paying) member.  Now, anyone with Hydrocephalus knows, this is a gamble you are not in the fortunate position of taking.  Time is of the essence when you are in need of surgery to remedy a shunt/ETV failure…this is a fact.  You have NO idea when the next serious episode will strike, NO idea of knowing when or IF you will need surgery again because you’re going through shunt/ETV failure.  As an example, the insurance company I’m with at the moment covers brain surgery, but my claim would need to be assessed at the time and a decision made as to whether or not they’ll cover me.  Claims normally take 5 working days for them to make a decision and when asked “How do I go about making a claim in an emergency situation?“, the answer is “You would need to call us and we will assess the situation at the time“.  It’s a dicey situation and one no Hydro warrior wants to be in.  Do I feel secure in this knowledge?  NO…but what choice do I have?

A further example of how I came to this point, is from my own personal experiences on this front.  When I was diagnosed, at age 29, I was lucky enough to have medical aid.  This meant I was covered for my Hydrocephalus 100% up to the medical aid limit.  Therefore, my first shunt surgery was covered 100% leaving me feeling confident that all medical care would be taken care of without any financial concern to me.  Looking at the final bill…to say it was a huge relief would be an understatement.  This was by far better than being on a public system, which in my opinion is (crap) overpopulated anywhere despite the country you live in.  One thing for sure about being dependent on a public system is that the list of people you join for your particular care can sometimes be so long that you either wait for a long time or get shoved off it completely because your symptoms/case is not serious enough.  I’ve been through both of these scenarios, though not all Hydro-related.  Also, the quality of a public health system varies from country to country, some are excellent and others well… let’s just say they leave nothing to be desired.

Then, despite feeling protected from the financial burden of medical expenses with my medical aid in place, I was placed in the unfortunate position of being charged an excess.  The surgeon who operated on me last, in 2009, charged 3 x above medical aid rates which equated to thousands of Rand’s, money I simply did not have.  It was a financial nightmare for my husband and I but we got through it in the end.  This would be part of the reason why I wrote this post on the financial burden.

To add to the medical nightmare, we (without much thought in regards to medical coverage), left South Africa (this seems like such a dumb move right now but it is what it is), without medical aid/insurance in our new country.  Honestly, it was something which simply did not cross my mind, so please bear it in mind for yourself, if need be.

In hindsight, had I known what I know now, I think things would have worked out differently.  Luckily for me, the company I work for provides medical insurance as part of the package AND pre-existing conditions are covered.  Something I thank God for daily because, without it, I would have surely lost all my faculties by now.

The nut-crusher in this case though, I’m only covered up to 80% of the total cost.  I could do a co-payment but when your budget simply does not afford you the leeway, there’s not much choice.  80% might seem like good enough coverage but having to pay 20% of the cost of brain surgery, is not a comforting thought at all.  My paranoia is increased especially, since my last operation for a routine shunt revision, turned into 3 operations over 3 days.  The unforeseen can turn into a nightmare experience very quickly.  A week in ICU and a further week in the hospital recovering, with visits to an ophthalmologist because my vision was affected after surgery and, physiotherapy as I needed to relearn basics like getting out of bed, using a fork, walking, climbing stairs, etc.  The costs of which all added up in the end to a pretty huge amount.

So, coming back to the reason for this post.

I think it would only make sense for any young adult, currently on their parents medical, to remain with that same provider.  This way, your cover remains in place and you don’t need to wait or have your Hydrocephalus excluded.  However, if you are in the unfortunate position of not having medical insurance/aid, I would say it’s not all doom and gloom or lost upon you.  There are no guarantees as I’ve mentioned before above, but you might be blessed enough to not need surgery within the 3 years while you wait to be covered for your pre-existing condition.  This, of course, is a gamble you would need to weigh up for yourself as no one can tell you what to do in this regard.  I have a year left on my 3-year wait and am extremely thankful that I’ve been blessed to not need surgery again.  Does this mean I haven’t had reason to seek medical help during this time or that I’m relaxed in any way…?  Hell no!  Being paranoid is my only way to survive and something no one else around me understands.  But…it is what it is…

I’ve mulled over the situation and questioned whether or not I’m throwing money away while waiting.  Somehow, I can’t answer that with a wholehearted Yes.

Another thing to bear in mind.  As I mentioned above about the things that relax those around me, in terms of the free healthcare and ambulance services.  I don’t know about you but in my opinion, the experiences I’ve had when visiting the Emergency Department, most medical professionals aren’t too knowledgeable about this condition.  This is something I’ve come to expect and leaves me feeling helpless and insecure.  It’s just not a position I’m prepared to place myself in.  Sure, they’ll be the only alternative when I have no other option but as long as it doesn’t have to be, I’ll do the best I can to hang on for another year.  In the end, I know it’ll come down to me being dependent on the very system that I’m trying to stay away from right now.  This is simply because medical cover is expensive and I don’t expect to be in a position to afford the costs forever as I get older.  (Depressing, I know…sorry).

One advantage of having the cover is the fact that diagnostic testing is done much faster and waiting times aren’t as strenuous.  However, with that said, being a new patient does come with its own drawbacks.  Your wait to see a new Neurosurgeon/specialist can sometimes be as long as 2 to 3 months.  On the public system, you could wait between 4 to 6 months, slower but doable with a certain amount of faith and endurance.

My empathy, however, in all of this, lies with parents who have children born with this condition and aren’t covered.  No one can say their kid won’t get it and no adult can safely say they won’t develop it later in life…look at me, I did!

Hydrocephalus: The pre-existing condition you wish you never had.  If dealt this card in life…do the best you can to help yourself.  Hopefully, this post makes you think or consider your options a bit more clearly.

Always remember…you are never alone…



  • Anonymous

    August 20, 2019 at 11:41 am Reply

    Wow… my daughter acquired hydro from pre-mature birth due to extreme negligence from Kaiser. I am so angry at them at this point fir being so dishonest. Man, they should automatically cover her for life.

    • Skyewaters

      August 20, 2019 at 9:21 pm Reply

      I’m so sorry to hear that. Negligence should never be the cause but I know sadly it is.?

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