Many of us who have this condition have been born with it and therefore don’t have any idea what it’s like to live without it. Also, you can’t miss something you never knew. I posted this on Valentine’s Day and have had a few people ask: “What’s it like...
Articles with the Tag Brain surgery
What would you do?
O for “Oh no!”, “Onward and upward”, “Over it!”? Whatever it is, that’s where I’m at. Moving on should get easier, especially after consulting with so many specialists but… It’s as trying now as it was when I first started out! 3 countries later and I appear to either...
Forget you have it…
Realistically, on a scale of 1 to 10, how easy would it be to forget you have an incurable condition? More specifically, Hydrocephalus. I’ll admit, there are days where my memory issues come in handy in this regard. To carry on with life, as if nothing is wrong, is...
There’s bound to be casualties…
A diagnosis of an incurable condition will undoubtedly leave some casualties along the way. In this instance, I don’t mean anyone dying but rather loss of relationships. Some of us are born with Hydrocephalus, some of us are diagnosed somewhere in-between and others, towards our last stretch of the...
The devil is in the detail
Have you ever had a consult with a specialist for Hydrocephalus and walked away feeling like they simply didn’t listen? Or, maybe you read their report after your consult, and think: “Thats not what I said!”, feeling deflated by the same token. If you have, you are not alone!...
What would you tell your younger self?
We all walk a different path despite being diagnosed with the same condition. Some, or all of these emotions, may play a part in your story (in no particular order and, sometimes, it may even be a case of repeating itself). Looking back at my own life with Hydrocephalus,...
Looking after your mental health
Mental health challenges, are nothing to scoff at. I do believe that most people experience something (or even a few) that adversely them, at one point or another. I’m not ashamed to say I have my fair share of ups and downs. It’s never easy to deal with and,...
Hydrocephalus: Life interrupted…
Today, the 2nd of December, marks 11 years since my emergency ETV was performed (the previous 2 day’s surgeries, were unsuccessful). 3 surgeries over 3 days, while 5 and a half months pregnant… Day 1 – VP shunt revision of a Medtronic Programmable Day 2 – VP shunt replacement...
Hydrocephalus: Invisible illness has a voice…
Hope. A word with so many different connotations, for different people, depending on their individual circumstances. Whether you’re the one diagnosed with Hydrocephalus or you know someone who is, it comes into play. And, since this is an incurable condition, your hope morphs as it ebbs and flows in...
Hydrocephalus: A hard way to learn what drugs to avoid!
Disclaimer: I’m writing this post in hindsight, which is a wonderful gift and at the tail end of practically poisoning myself, unknowingly. So, apologies in advance where needed…(Also, it’s not so much Hydro-related but no doubt a piece of my Hydro puzzle). NB. This drug might work for some...