It almost feels surreal. There are timeline estimates placed on the length of time a shunt or ETV could take before it fails, the likelihood decreases (or so I’ve been told). They have a lifespan in terms of success vs failure rate. Generally, 2 years for a shunt and 5 years for an ETV, if…
After diagnosis (Age 29), I was told by the attending Neurosurgeon, that he’d be putting in a Medtronic Strata Programmable VP Shunt (Ventriculoperitoneal). It goes into the ventricle in your brain, fed down the side of you head, behind your ear, down your neck and chest, and into your abdomen. (Hence the 6cm scar, just…
Do you ever have conversations, sit back later and realise there was a message in it for you? It’s no secret, my previous consultation left me a bit down in the dumps (Ok, very much so!). I slipped down the same slippery slope, like so many other times before, and I’ve managed to claw my…
After my last post, I withdrew from the world for a while. My way of coping I guess. In fact, I wasn’t too sure what my next post, if any at all, would be. I truly felt like the wind had been taken out of my sails and I lacked direction. I can’t honestly say…
When I stepped into that ring again yesterday, I was “prepared” for the outcome I got…or was I? Funny thing about it, with the softest blow, I feel like I’ve been beaten to a pulp. That’s how little it took. For me to know the possible outcome, thinking I could handle it, to the emotional…
Read this if you’d like to gain a better understanding of the mindset of someone with Hydrocephalus, waiting for an upcoming appointment. (Generally speaking, of course, as we all approach situations differently). I posted yesterday that I’m feeling “anxious” about my upcoming consult tomorrow. Truth be told, there’s probably many words I could use to…
Have you ever found yourself in a situation where you make a big deal of things and, after some time has passed, realise that it wasn’t as bad as you thought? I’ve certainly had my fair share of these moments and still do! Life hands us all lemons along the way, I have no doubt…
The very word “invisible”, speaks volumes if you care to notice it. To look at a person with Hydrocephalus, you wouldn’t know they had it, unless they’ve told you, or the signs are unavoidably visible. Also, many of us, live our lives feeling very isolated and most of the time, very lost. It would probably…
Some “triggers” aren’t necessarily recognised as anything serious by the medical professionals we deal with. If this is the case, are we meant to ignore them too? Take for instance weather changes such as barometric pressure. Even as people with Hydrocephalus, it doesn’t affect all of us in the same way or even at all….
It feels like waiting is one of the things you do a lot of with a condition like Hydrocephalus. Being a person with little to zero patience (I do try though), it can become quite “painful” at times. In saying that, the comparison cannot be drawn between just your average waiting for, “something in general”…
