What would you do to give yourself peace of mind?

Hydrocephalus is a condition that causes you to constantly question, especially when the symptoms change. It leaves you playing a guessing game on repeat. For some, their symptoms of treatment failure are always the same. For me personally, it’s not, which only adds to my confusion.

Truthfully, I don’t like the uncertainty. I hate not knowing. I also don’t like being reactive, but would prefer being proactive. If anything can give me a sense of being in control, as much as possible, I’ll take it!

If only it were a simple case of knowing what to do next when you’re feeling unwell. Most of us living with this condition know, it can be a bumpy roller coaster ride with some curveballs thrown in for good measure. I think it’s fair to say;

Living with hydrocephalus is a “clear as mud” condition.

The reality of it all

It’s a fact; shunts and ETVs save lives, I cannot dispute that. But, they also come with a plethora of unpredictability. The time between surgery is not an indicator of hope. Just because your last treatment option lasted a long time, does not mean the next one will. Surgery can happen at any time. I only need to reflect back on my hydro journey, from diagnosis to now, to appreciate this fact.

My husband posed the question not long ago; “Are they buying these shunts off Temu?”, after I needed a second valve replacement within 6 months. Rhetorical at best and a question I did not have the energy for. While his question gave me a brief pause, wondering the same, I do have a better understanding of this condition, and why shunts and ETVs fail, than he does.

It’s the reason why I feel like an implanted pressure sensor is the only thing that makes sense to me right now. Even more so than having actual pressure monitoring done in-hospital. Knowing if the pressure inside my brain is what’s causing me to feel what I am, at any given point in time, OR something else — is a game changer!

Looking ahead

I’ve been fighting an intermittent headache over the last few months, which led to Dr T adjusting my shunt setting twice since the new valve was replaced. On Friday it escalated, putting me on edge. While this is no way to live, I have faith that I will be OK — regardless of what happens.

After my consult with him on Friday, he told me to do my upcoming MRI (brain and C-spine), sooner than May, which is when it was originally scheduled for. While he waits to get hospital approval to implant the M.scio pressure sensor, it’s the only thing he can do at this point in time. Another possibility would be to replace the current shunt, if need be, yet to be determined.

I get it, he needs to know what he’s dealing with — issues with my shunt or referred pain from my neck/spine.

The other option, had it been approved for use in Australia, I would be opting for the Kitea sensor. This article shared with me by Simon Malpas, CEO and Founder, makes for some interesting reading too. Including a comparison with the M.scio. But, in the essence of time, and to answer my own question: What would you do to give yourself peace of mind? I opt for what’s readily available to me now. And, praying for patience as I’ve been talking about this with Dr T since November 2025!

The cost adds up

Appreciating the true cost of all this is sometimes too hard to quantify. Thankfully I have private health insurance, which means I’m able to have the bulk of the cost covered. However, it’s the out-of-pocket expenses that add up in such a short time. When you’re not working, it adds up!

Somehow knowing I have to keep paying for surgery for a medical device with one of the highest failure rates, seems unfair! But, when it comes to an incurable condition outside of your control, is that even worth getting into?

It’s just a stupid endless loop that I wish I could break. Thankfully, we both agree having the sensor will help, if only to rid us both of unnecessary frustration that comes with being “medically complex”.