Hydrocephalus : The financial burden

Hydrocephalus : The financial burden

As if having Hydrocephalus is not stressful enough, due to its unpredictable nature and challenges, there’s something else associated with it that can literally give you a headache…the financial burden that goes along with it.

The diagnostic tests that need to be done to ascertain if there is a problem, cost an arm and a leg.  It’s the kind of cost that gives one sleepless nights, causes strain on relationships and makes the patient feel like complete and utter crap for even having the condition in the first place.  (I know this sounds a bit dumb, given the fact that it’s not self-inflicted or something we brought on ourselves – yet I for one have apologised numerous times for the “inconvenience” of it all).  If this were a one-off fee or one time only occurrence, it would be OK but it never is…not with Hydrocephalus.  That remains a fact – UNTIL A CURE IS FOUND.

At this moment in time, I am facing this kind of stress and pressure (again), albeit a small price to pay for some direction or peace of mind regarding my suspected ETV failure.

After posting about being at the mercy of this surgeon, I received my appointment letter for an MRI, MRV & Flow study to be done.  This will be used to see whether or not my ETV is still open and serve as a good comparison to the last one I had done 3 years ago.  If the tests show even the slightest difference, he will operate.  However, if all is fine, he might do a lumbar puncture and if there’s nothing alarming, he will “remain reluctant to operate“.  As this has been his stance since our consultation, I have questioned whether or not what I was feeling or going through at the time, was actually real especially since I feel better now than I did a few days ago.  But, as anyone with Hydrocephalus knows, this is part of the “normal” process of feelings we go through – I know for sure, I’ve been at this point before only to repeat it again and again…

Is what I felt real enough to warrant further tests but more importantly, is it real enough to justify the amount I need to pay to have it done?  There’s a little voice in my head that yells “Hell no! That’s too much money and we can’t afford it right now!“.  All my upcoming financial responsibilities come flooding to the fore – my children and all their school/sporting needs, the visitor visa’s we need to apply for and pay so that our parents can visit in a few months time, the fact that if I have any lost time from work that’s not covered by leave – no work, no pay stares me right in the eye, in fact, everything…except my health need.

But, there’s also another little voice emphatically screaming “Just bite the bullet and do it because your peace of mind and life is worth more.  Besides if there is something going on, then at least you’ll know you are not crazy.  And, if there is nothing to be concerned about, then you deal with it when the time comes“.

Now some might say that I have just been plain stupid in the way that I’ve handled the choices I’ve made but there’s no room for that and quite frankly, I don’t really care for anyone’s negative opinion on that matter.   To give you some context around what I’m referring to:

Before emigrating as mentioned in my last post, I had medical aid/insurance and had all costs fully covered for any diagnostic tests, surgeries or hospital stays.  Unless the surgeon charged 3 x above those rates, resting the financial burden heavily on my shoulders.  This was the case with my last 3 operations over a space of 3 days.  It was not a fun time and one I definitely would not like to have repeated.  The problem at the time was that I had initially gone to find help in another city for exactly the same reason as now (no-one will listen to me or take my symptoms serious enough).  There, I found someone who actually did.  He booked me in for a shunt replacement on the Monday after doing a lumbar puncture the previous Friday which, should have been straightforward but, that’s not what happened.  It turned out to be part shunt replacement on day 1, whole shunt replacement on day 2 and then an emergency ETV with a removal of the shunt on day 3 – I was comatose for a full week and remember nothing from that time.  My last memory is of going to sleep on the Sunday night before and praying for my unborn daughter to be OK, I was 5 and a half months pregnant.

I remained in the hospital for another week recovering, so instead of just a few days as we had discussed, it was more like just over 2 weeks.  This is where the nail is driven into my coffin (so to speak).  Because, if I do have the tests done and there is something wrong, I don’t think my current medical insurance will be sufficient for the unknown but more importantly, neither are my personal finances.

I was lucky enough to get medical coverage on a regular care plan (covering 80% of all medical costs) when I joined the company I work for, but more importantly, they provide cover for my pre-existing conditions.  It was a blessing…

The dilemma, however, is with the 20% which I’m responsible for…You might think that to be a small percentage but brain surgery and all that “could happen amounts to a pretty large amount.

Being placed on a public waiting list is also not the ideal for me because you are one of many in a sea of people needing operations (speaking from experience).  Since I haven’t been on this list for my Hydrocephalus, I’m going to assume though that brain surgery would be regarded as a priority and would be done sooner rather than later.

I also took out extra medical insurance but still have about 18 months before I’ll be covered for pre-existing conditions.  Is it overkill?  Maybe…but it’s part of my greater plan – I just need to keep it together until my 3 year waiting period is up (says she with a feeling of “how the hell am I gonna control this?” but determined to anyway).

It makes me wonder how others handle the frustration and concern of it all.  Do you have medical aid/insurance?  Have you been stressed or heavily burdened by your situation/condition?

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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