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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5 things to remember to improve your life after brain injury: Redefining your new normal
Self-care is essential, especially when you live with a brain injury. The invisible nature of this disability leaves you at a societal disadvantage because others cannot understand what they cannot see.
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Shunt Over-Draining (With a Patent ETV): From Symptoms To Surgery. What You Need To Know.
Learn how shunt over-drainage can cause headaches, nausea and dizziness—even with a patent ETV—and why valve replacement with a SiphonGuard was needed.
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Pressure sensors are a godsend, but getting one isn’t easy
Non-invasive brain sensor to measure intracranial pressure. From reactive to proactive!
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Is it my shunt, or something else..?
While you feel like crap, you convince yourself you’re imagining it. And, there’s probably nothing wrong.
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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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Hydrocephalus: The silent assassin
Hydrocephalus does NOT discriminate. There’s no single cause and more people are diagnosed with it, than you, or I, could ever know. Globally! It really is a silent assassin. One you can’t see coming. Awareness and education provide the best armour. Saying; “It won’t happen to me”, is no guarantee. Thanks to having viral meningitis,…
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Be the change you wish to see in the world or, at the very least, be part of it.
I didn’t set out to be part of change. I also didn’t aim for a possible improvement to the current state of my injured brain. Regardless, I stay eternally hopeful. I am nevertheless, driven by sheer willpower and determination as I continue to make progress. I know my brain is not (quite) where I want…
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Medical gaslighting is abuse
I found this quote a while back, but it still resonates with me. More importantly, it validates my experiences thus far. Not only has it been true since my hydrocephalus diagnosis (May 2007), but it’s especially true following the Intracerebral Hemorrhage I had, during a repeat ETV (May 2021). Life changed in an instant, albeit…
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Blocked shunt valve: Why trusting your gut is important!
I didn’t quite spot my treatment failure this time, at least not as I would have liked to. My previous shunt, a Sophysa Polaris (A.K.A. Sophy) was placed on 23 April 2022. If only shunts came with a warranty or refund policy. Given their high failure rate, I suppose that would likely be uneconomical. But,…
