Shunts save lives; they also cause more problems for those who need them, when they fail to work as intended. I believe each person with hydrocephalus is entitled to feel the way they do about their treatment option, regardless of what that may be. Our experiences differ and, depending...
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....
Shunts, a bone of contention for many people diagnosed with Hydrocephalus. I would almost go so far as to say there’s a divide on the feeling towards this “lifesaving” device. Not everyone feels the love when it comes to them, but we all know that without them, things would...
We Endure because we have to. We find ways to cope, survive and get through by being Resourceful. We gain Strength through and from it all, not by choice but, because there is none… People say: “You shouldn’t let your circumstances define you…” Hmmm…I say, there are times when...
A diagnosis of Hydrocephalus, caused through no fault of my own, is something I can live with. I’ve had to learn so much in order to cope and, more importantly, accept this new way of life. It’s a constant learning curve! I don’t exactly have a choice. None of...
Concussion, based on a true story, is currently playing on Netflix (until 9 June). It’s scary how being able to relate to something, so serious, can hit you so hard. Despite it being centred around the National Football League (NFL), the bottom line of this movie, and how it...
2 years ago I posted this: There’s always risk with any operation. Despite having a brain bleed during surgery last week, the reason for the blood in my CSF, I feel fortunate to just wait it out and have the blood clear. The discomfort and side effects of nausea,...
There are so many reasons why this happens to people: Concussions, domestic violence, sports injuries, motor vehicle accidents, etc. And yes, even brain surgery. You (literally) go from one moment to the next…injured beyond your own understanding. Like a butterfly, you have a rebirth of sorts. Becoming someone else...
Today marks two years since my repeat ETV. An operation that placed the cherry on my hydrocephalus cake. I’m navigating a brain injury caused by the bleed I had during surgery. It’s been hard to accept. It still is. (Time, patience and understanding is what I need, especially from...
A year ago today, I had a VP shunt placed. That was just less than a year after my repeat ETV (Endoscopic Third Ventriculostomy). A surgery which sealed my fate with a brain bleed (A post for another day). Statistically, shunts fail within the first year of placement. That...
We are caught between a rock and a hard place with this condition, WANTING and NEEDING help to make the pain go away but, NOT wanting to endure MORE brain surgery. The irony does not escape me..! It’s not an easy thing to go through, by any stretch of...
I have been feeling this way, more and more, each day. I have good moments and others less so. It’s a scary situation where you feel like you’re losing yourself. Like you’ve lost control. Helpless to your core and all you want, is out of the jail cell, which...
So much of what we face in life we have no control over. Some things we can change or simply eradicate from our lives. (That goes for some people too). But, sometimes there aren’t choices given with the challenges we have to endure. The only choice we get, is...
You look at me and see the same person but, on the inside, I’m existing in a living nightmare..! C. A. Marriday A repeat ETV (Endoscopic Third Ventriculostomy), performed on 4 May 2021, brain surgery #6, resulted in a haemorrhage during surgery. The effects of which have only escalated...
An iceberg seems appropriate for this post and, the sinking of the Titanic, is a perfect example of not realising the full extent of what lurks beneath the surface, hence the image I chose to use. IMHO! The unseen can sometimes cause more damage than what’s apparent to the...
