Hydrocephalus: Confessions at the edge…

I don’t regard myself as suicidal. It’s a very serious thing, to say the least. Therefore, I will NEVER make light of it. Too many people have ended their lives this way and the after-effects do not escape me.

Despite being told that I am, treated with medication and “diagnosed” as depressed (another thing I most certainly am NOT!), I do have to wonder if any of this is worth the fight. There’s a clear difference (for me anyway) between being clinically depressed and going through depressive states. Also, theres a reason why depression comes into the equation, in this case at least. But, even if I were, I’d sure as hell have good enough reason to be! If I have to let those emotions live and breathe in me, to survive the wave, then the rest of the world can just fall in line and keep their opinions to themselves.

Just to be clear, I don’t want anything to be wrong BUT, I also can’t ignore the symptoms I’ve had. An unfamiliar newbie on my journey, reading this post, will not get it (not your fault but hopefully you reserve your opinion, especially if it resembles a: “What are you on about?” scenario).

A few weeks back when all this Coronavirus madness started, and the whole world actually started to take it seriously, I had an MRI of my brain and spine. I was only too happy to wait for my results to become available online and refrained from contacting the surgeon’s room. Long story short, the results last week, are not reflective of what he requested. “Please compare 2007 MRI, previous shunt followed by ETV, 2009. Cyclical headache. Assess patency ETV. Assess evidence chronic low pressure). In fact, there’s no mention of a comparison, or “no chronic low pressure“.

Needless to say, when I read the report, I was livid, disappointed and just fuming. I spent the last few weeks constantly calling to get the X-ray service provider, to upload the images I had on CD for the surgeon as he doesn’t have a CD drive on his laptop. They failed to do this and after a lot of to and fro, I was told they are not “allowed” to upload images taken by another service provider! They wouldn’t even entertain my request to reread the scans to reflect what was actually asked for. Their response, “Well if the surgeon has a problem with the results, then he should call us himself and request a reread”.

I called the surgeons room to inform them and was called back later the day with a follow up Skype appointment for earlier today. I didn’t expect much from the appointment. Given the times where, financially, everyone is strapped for cash, I accepted the appointment with some hesitation. Like I’ve said before, this condition causes a financial burden, which doesn’t necessarily afford you the luxury of declining these kinds of consultations. First and foremost, you don’t get an appointment to see a Neurosurgeon within a matter of days, it’s usually months in advance. Maybe the current situation has affected his list of appointments. Maybe my appointment is just a means for him to get some form of income amidst all this madness. Who knows?

Having gone through so much disappointment over the years with this damned condition, I expected much of it to be the same. I anticipated this consult going nowhere and to probably be told: “Oh, it’s alright, let’s just wait until you’re symptomatic again and meet at the hospital as previously agreed”. This was pretty much the case.

In a nutshell: The surgeon is happy with the current MRI as it shows everything is normal (which he expected anyway) and that there is flow through the stoma. They have noted scar tissue from my previous shunt surgery, which he says should not be causing me any discomfort like the burning, pulling pain I get down my old shunt tract. “Maybe under the skin but not at the site of where my old shunt was”. ICP Monitoring is the next step but due to the current situation with COVID-19, that will only happen if and when I’m symptomatic, as the “hospital aren’t really allowing bookings of this kind purely for diagnostic purposes” – understandably so.

If anyone had to say to me: “I don’t want to live anymore…life is too hard”, I’d be the first to try and encourage them to see things differently, to dissuade them from their way of thinking and possibly ending their life. But…

I’ve been pushed to the edge. An edge where I will request a script for some medical marijuana and manage the pain and effects on my own. Pain which has been troubling me more often than not, where I smile at the world around me and fight against my own body’s torture chamber. Waking up all hours of the night because of pain down my spine, back, arms and head. I’m refusing to play this damned game any longer and letting the symptoms run their course. (Is this the same as being suicidal…? To not seek help if and when you need it and to allow nature to take its course…?).

You see, as people diagnosed with Hydrocephalus, each time we go in search of medical help, it’s not because we are crazy, attention seeking, hooked on drugs, depressed, etc. (This list is endless).

It’s because we actually want someone to make the pain go away, to take away the fear that we won’t be there to take care of our families…our children. It’s because we know there’s something wrong because we know our bodies well. We know we are not faking, and we know that giving up is not an option despite feeling like we want to.

But, sometimes, we get to a point where we know we’ve given it our best, fought hard and just simply don’t have the will to carry on.

Everyone has their breaking point; everyone has the right to say, “No more!” Right now, I’m exercising that right. As for my family, I’ve certainly given it my all for them whether they realise it or not. I know they don’t read these posts and maybe that’s a good thing. I know the time will come when they will…Despite not wanting to at first, I told my husband about my consult today and gave him the option to sit in or not. He did and I’m glad he decided to. At least now I don’t have to feel like I’m making a mountain out of a molehill when I tell him ICP monitoring is the next step!

I was planning on facing it all alone, going to the hospital, etc. (when and if the time comes) but, I owe it to my kids not to do that.

I don’t want to be this angry person anymore because I simply don’t feel listened to. It’s bloody hard fighting against the system, not getting anywhere and even more so being a complex case. It’s not even about making yourself heard because I believe we all do that in our own way. I think a lot of it has to do with the other parties’ willingness to listen…and clearly, they’re not…