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…
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…
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…
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…
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…
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…
Shunts save lives; they also cause more problems for those who need them, when they fail to work as intended. I believe each person with hydrocephalus is entitled to feel the way they do about their treatment option, regardless of what that may be. Our experiences differ and, depending on your own individual circumstances, you’ll…
What is it about the fact that Hydrocephalus is incurable that people don’t understand? More specifically, that treatment options i.e., brain surgery is NOT a cure. It’s as tiring for me to continuously say, as it is to hear or follow someone else’s train of thought, on the matter. More so, when said person/s nod…
Shunts, a bone of contention for many people diagnosed with Hydrocephalus. I would almost go so far as to say there’s a divide on the feeling towards this “lifesaving” device. Not everyone feels the love when it comes to them, but we all know that without them, things would be “challenging”, to say the least….
We Endure because we have to. We find ways to cope, survive and get through by being Resourceful. We gain Strength through and from it all, not by choice but, because there is none… People say: “You shouldn’t let your circumstances define you…” Hmmm…I say, there are times when you don’t have a choice and…
A diagnosis of Hydrocephalus, caused through no fault of my own, is something I can live with. I’ve had to learn so much in order to cope and, more importantly, accept this new way of life. It’s a constant learning curve! I don’t exactly have a choice. None of us do… You question. You cry….
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.
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.
Non-invasive brain sensor to measure intracranial pressure. From reactive to proactive!
While you feel like crap, you convince yourself you’re imagining it. And, there’s probably nothing wrong.
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…
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,…
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…
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…
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,…
Trusting your gut This is the ONE thing that I‘ve relied on the most. More importantly, I listened to my body. As I told Dr T, I don’t have a medical degree, but it’s the only thing I have to guide me. After having a shunt patency study on Monday, they’ve discovered a blockage at…
