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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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,…
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Faking being OK when you’re physically not, is far harder than faking being sick.
As someone diagnosed with Hydrocephalus and living with a brain injury, this is a sore point, obviously. People don’t necessarily have to say they don’t believe your symptoms; their actions (or even inaction) speak loudly and clear enough. Seeing beyond an invisible illness or injury, is a difficult one, I get it. How can you…
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Brain Injury: The invisible disability.
Hydrocephalus and brain injury won’t define my outcome, I reserve that right!
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Incidental MRI finding: Highlighting what lurks beneath the surface.
Despite hearing my surgeon speak, providing medical information, sound no longer filtered through my eardrum. After some time (I’m not sure how long), I drifted slowly back to the sound of his voice. I heard Dr Tollesson half thinking out loud; “How do you get a patient not to worry when you tell them they…
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Cognitive Impairment: Advice For Dealing With This Life Changing Event
My top piece of advice in this instance, NEVER give up on yourself! I feel like I’ve been neglecting my website, that includes anyone who follows this blog. For that, I do apologise. Unfortunately, it’s not entirely within my control. Nevertheless, I also know it is far from the truth. In fact, I’ve been working…
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Positive self-talk is so much better!
Ever hear of negative self-talk? I’m sure most people have and are VERY familiar with it. I know I sure am. There’s NO shame in that! However, I have found that the opposite, (though it requires effort), is much more beneficial. For those of us diagnosed with hydrocephalus, be it from birth or acquired later in…
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It’s been a painful few days.
I’ve been dealing with a headache that won’t go away, lasting all day and night. Nausea, no vomiting. Lack of appetite. And, my shunt felt tight initially, pulling down the right side of my head. Thankfully that’s subsided. I tried to see if I could hear “Sophy” (my shunt) this morning. It was quieter than…
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Hydrocephalus Awareness: What you need to know
What is it? Hydrocephalus is an incurable neurological condition that affects millions of people across the world. It does not discriminate. To date, the only treatment option available requires a person to undergo brain surgery (repeatedly), which is NOT a cure. The treatment options available CAN and DO fail, at any time. Too many people…
