What would you do to give yourself peace of mind?
There are no guarantees with this condition. But you do what you can, with what you have.
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Technology at the heart of an incurable brain condition
One can almost not imagine a world without technology these days. So, it makes sense that advancements in the medtech space moves into the arena of neurological conditions. ICP (Intracranial pressure) monitoring The physical sensor I had placed in 2021 to have ICP monitoring done. What can I say, I like souvenirs. My neurosurgeon was good…
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The unexplained is complicated, and neurosurgeons don’t always have the answer…
Let’s be honest: They are human too (despite some of them having a god-like complex). They can, and do, make mistakes but they also save lives. The difference: A surgeon who doesn’t make the effort, gives up because it’s too hard, or simply dismisses your concerns. VS A surgeon who goes the extra mile in…
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When you feel like sinking to the bottom…
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 myself. Easier said than done). So…
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Celebrate the milestones, it’ll help you face the next one!
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 doesn’t mean they can’t or won’t…
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Living with a VP Shunt is not new to me but, this time, it’s different.
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…
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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 with an Orbis Sigma Day 3…
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Hydrocephalus: Know. Understand. Appreciate…
I have Hydrocephalus and I’ve had brain surgery to treat it. 5 thus far, in fact. I’ve had a VP Shunt, which has been removed and for the last 10 and a half years, an ETV. But…, this doesn’t mean anything in the grand scheme of the condition. Too many people across the world have had more brain surgeries because…
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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 abdomen. (Hence the 6cm scar, just…
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Hydrocephalus: Do you ever wish you could just go back to before you knew you had Hydro?
I know that there are many people who are born with Hydrocephalus so, this question doesn’t really apply in that instance. It’s more posed at people like me, diagnosed at age 29. I had learnt all the basic skills I needed by then, had no difficulties of note and went about my day and life…
