Gert Tollesson, aka Dr “O”, is the 15th specialist I’ve consulted with regarding my Hydrocephalus. Most of you, who follow my blog, will know the uphill battle I’ve had to climb to finally get to him! And, thank God I have!!! Words I would use to describe him: Kind,...
Articles with the Tag ETV Failure
Pre-op consult and what you may want to consider…
A few days ago, I was faced with a heavy burden of having to fork out just shy of AU$5000 up front, which I normally keep under the mattress for a rainy day, like everyone else (sarcasm intended). It required an added level of perseverance and resourcefulness. Let’s just...
Money Or Your Life..?
It’s not an easy decision to make. It might seem obvious but reality dictates otherwise. And, unfairly so at times… I’m at a crossroad, one I’ve faced before, so many times. I finally found a surgeon who thinks outside the box and agrees my ETV is partially blocked. That...
Doctors shouldn’t be the reason why patients suffer…or die!
I’ve never been a person blessed with patience. If I had to be honest, I’m probably the least patient person I know! There’s so much waiting you have to do in-between doctors appointments, for test results and even the follow-up consult after the tests are done. In my last...
Dr “O” has done it!
Finally! I have someone who has listened, not just by acknowledging what I’m saying but by actually validating EVERYTHING I’ve been saying. He didn’t tell me I’m complex or try to palm me off on someone else. I felt genuinely listened to and experience so much empathy, which is...
Hydrocephalus: Nothing about this condition is easy…
Anyone who has followed my blog and knows my journey, would have an understanding of where I’m at. But, in the interest of those who aren’t aware, I’ll try to explain. After last week’s vision loss and subsequent headaches, I’ve had time to think (aka, silently freak out!). My...
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: I’m not scared to face all this on my own.
There are days when I wish I couldn’t read people. The unspoken can sometimes be so loud. • A reaction to something said. • The change of tone in your voice. • The way your face changes: mouth, eyes, brows… • A shift in your posture and demeanour. •...
Hydrocephalus: The waiting game and getting in the way of life!
Hydrocephalus doesn’t ask you if or when it can interrupt your life, it simply does. No matter whether you fail your last year of school because you were symptomatic around exam time and your brain took such a beating that nothing would stick. Or you have your baby brother’s...
Hydrocephalus: Unfair question or not?
“What do you want them to do?” A question I’ve been asked by some well-meaning individuals in my life, and in general, when I’ve been at my lowest point of not having my symptoms treated. (They don’t have Hydrocephalus). Truth be told, there’s a physical reaction I have to...