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 the imagination. It’s a vicious cycle;…
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 is your mind. Knowing how to…
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 how we react, or respond to…
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 and is still ongoing. (Reading that…
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 naked eye, especially when it goes…
For context, you can read Part 1 of 2 here. I’ve always been one to take care of others, especially my children. The thought of “slipping”, is leaving me feeling quite perplexed! C. A. Marriday I know there’s not much I can physically do to change any of what I’m going through right now. As…
Part 1 of 2 That’s rhetorical! However, my question is sincere and this is why… Having hydrocephalus and enduring brain surgery (repeatedly) takes a toll on you. We never really know what the effects will be. Symptoms, surgery and recovery, may differ with each operation, per person. For those of us diagnosed with it, we…
Some days it feels like I’m literally floating through life, day by day. Caught in a never ending loop, facing the challenges this condition imposes. I want and need a break… Faced with the reality that the treatment options, keeping me alive, are not ideal. They fail. They need unscheduled TLC. They are unpredictable. They…
There’s so much you need to remember and be aware of and yet, it’s quite simple. Contradictory, I know! There are a few things we need to be aware of but, there are so many times you doubt yourself. The questions never end and nor does the second-guessing… I’ve learnt a few new things from…
For a start, I can hear my shunt draining CSF when I change positions or tilt my head a certain way. This is something I did not experience with my Medtronic programmable shunt. There are even times where I can hear the little ball inside the valve, rolling around like a bobble head. Especially, when…
