What is it about the fact that Hydrocephalus is incurable that people don’t understand? More specifically, that treatment options i.e., brain surgery is NOT a cure. It’s as tiring for me to continuously say, as it is to hear or follow someone else’s train of thought, on the matter. More so, when said person/s nod their head in understanding and yet still make statements like; “I hope this shunt comes with a warranty” (I don’t even know how to respond to that!) or “I hope this was the last time”. Truth be told, it evokes too many emotions within me, to process all at once…It probably falls under the banner of; “If you don’t have anything nice to say, then say nothing at all…”
I fully understand the people closest to you wanting, or needing, to think that you won’t have to endure more brain surgery. To feel like they’d rather you didn’t have to go through it all ever again. But, SERIOUSLY, the odds aren’t always in our favour. Just because some people have shunts that have stood the test of time, doesn’t mean the next person will have the same experience. Likewise, just because someone endures more brain surgeries than the next, does not mean the same will be true for others.
Regardless of the relationship you have with someone who crosses your path, you should never have to accept their ignorance as an excuse.
It’s simply NOT a case of never saying never…I can’t even force myself into thinking it’s “because they care”. I’ve even used the excuse; “People can’t truly understand something unless they themselves are going through it”. I honestly struggle with it all. More especially, if their comments or actions cut like a knife, or they lack the required amount of empathy. Admittedly, not everyone possesses this skill. However, I have this advice for those who don’t; “Fake it till you make it!” Because, when it comes to the effects of hydrocephalus, there’s no room for faking on my part!
I view things differently as time goes by…
On 4 May, 2007 I received my diagnosis. I was 29 years old and probably at the height of my career. It was a day I remember very well. Since then, I’ve had 7 brain surgeries and consulted with 15 different specialists to get to the one I have now. He’s only the 2nd neurosurgeon I hold in high esteem.
Please don’t misunderstand; I’m all for being optimistic and positive. Heck! I’m even hopeful to a certain degree. But, when brain surgery takes place twice within a 12-month period, I have to be realistic. And, just to be clear, 12 months is nothing in the grand scheme of things. That number could easily be: 1 day, 1 week or 1 month apart!
The only fact I can give you is: Hydrocephalus IS unpredictable. Shunts and ETVs, CAN and DO fail, at any time. They can even be fully functional but, not quite enough to regulate the flow of CSF, as your body requires, when the pressure is high. (As I’ve just found out).
At the time of writing this, I’m 5 days post op, having had a VP shunt placed (again) on Saturday, 23 April 2022. My ETV is wide open yet, I’ve been symptomatic. It’s also nearly 2 weeks shy of having my repeat ETV, almost 12 months ago (ironically on 4 May 2021).
It’s no secret, I’m not a fan of a shunt and, agreeing to have another one put in again, was a decision made after a lot of consideration. More on that, how I got to this point and what recovery has been like, in my next blog post…