A hydro warrior asked me this week: “If you’ve ever gone for a second opinion, have you ever felt the second opinion judging you because of previous treatment you’ve received?” I had to smile at this question because not only have I sought a second opinion but I’ve lost...
Hydrocephalus: Losing oneself without even knowing it…
Something no one can prepare you for, is the moment your whole life changes. It doesn’t matter what it is really…you can read an article about something that happened to someone else and go, “Oh! That’s just so sad…” but you move on and forget. Then, life happens to...
Hydrocephalus: Shame on you…
When I wrote We are not faking, I meant what I said. What I didn’t know at the time was how much of a lifeline these words would become. A lifeline not that someone else throws your way but one that you need to remind yourself of, more than...
Complex, complicated and sitting on the fence
Complex and complicated, two words that have been used, my entire life it seems, to describe any medical condition I’ve had over the years. My parents have told me that the reason for sending me to live with my grandparents at a very young age was because I was...
Hydrocephalus: A muddled state of affairs!
How quickly, or often, does your brain go into a muddled state? I find that having an idea is one thing, especially a good one but, when it comes to delivering the pitch, conveying it to someone else…I totally end up like a cat caught up in a ball...
Hydrocephalus: Just another detour…
There are moments in your life where you have no control over what happens to you, so many, too many to list. We all have them, we all go through “stuff” that either make us or break us. Situations which require us to go on a journey, into the...
Hydrocephalus: 10 Years Post ETV (brain surgery)!
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...
Hydrocephalus: What shunt type is right for you…?
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...
Hydrocephalus: Resuscitation through conversation…
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,...
Hydrocephalus: The validation effect…
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...