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…
There some things in life that no one can prepare you for… For example: Take a diagnosis like Hydrocephalus, an incurable condition, at a pivotal time in your life. An interruption to your norm with brain surgery being the ONLY treatment option, for the rest of your days. It could be 1, it could be…
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…
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…
Finding the balance, living life with hydrocephalus and brain injury, is tricky. Relationships take strain and fall apart. The loss of some relationships has been sad for me. But I’m realizing that this is inevitable unless the required effort is made by all parties. Truthfully, some have been easier to let go of than others…Maintenance…
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…
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…
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…
It’s easy to feel powerless when you’re diagnosed with an incurable and invisible condition like Hydrocephalus. And, having to learn to navigate life with a brain injury. When life changes within the blink of an eye and your circumstances are unrecognisable. When the person staring back at you in the mirror, is more like a…
That’s it for me. I’ll be closing my social media accounts and blog over the next few weeks. But, before I go, know this: Skyewaters has been a lifeline for me these past few years. Living with an invisible and incurable condition, is a challenge on SO many levels. Having to prove yourself and convince…
