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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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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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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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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The hard reality of living with a brain injury…
***TRIGGER WARNING: This post touches on suicidal thoughts and death*** When you sustain a brain injury, in the prime of your life, things change in an instant. It hits harder still if you’re a high functioning person, independent and always doing everything for everyone else. Nothing can prepare you for what comes next as you…
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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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Haemorrhage during brain surgery has lasting effects…
You look at me and see the same person but, on the inside, I’m existing in a living nightmare..! C. A. Marriday A repeat ETV (Endoscopic Third Ventriculostomy), performed on 4 May 2021, brain surgery #6, resulted in a haemorrhage during surgery. The effects of which have only escalated and is still ongoing. (Reading that…
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Ever feel like you’re losing your mind..? Part 2 of 2
For context, you can read Part 1 of 2 here. I’ve always been one to take care of others, especially my children. The thought of “slipping”, is leaving me feeling quite perplexed! C. A. Marriday I know there’s not much I can physically do to change any of what I’m going through right now. As…
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Ever feel like you’re losing your mind..?
Part 1 of 2 That’s rhetorical! However, my question is sincere and this is why… Having hydrocephalus and enduring brain surgery (repeatedly) takes a toll on you. We never really know what the effects will be. Symptoms, surgery and recovery, may differ with each operation, per person. For those of us diagnosed with it, we…
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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…
