Pressure sensors are a godsend, but getting one isn’t easy

Ever since I heard about it, I’ve been sold on the idea of having a pressure sensor implanted in my head. Admittedly, my understanding is limited. However, I know enough to decide it’s the way to go next. Knowing that there is a way for a patient with hydrocephalus to measure their own intracranial pressure at home, is a game changer!

Until recently, I have only been aware of the Kitea sensor. However, I have also heard about the M.scio at the hydrocephalus conference in Melbourne last month. There are probably others, but I’m only aware of these two. While I understand that FDA and TGA approval are crucial to regulate devices such as these, the clock continues to tick. More importantly, I can only imagine the cost factor that will come into play and am silently bracing myself.

Wouldn’t it be great if these devices were accessible to those who need it, and didn’t cost a fortune?

This condition is maddening!

I had a follow-up consult with Dr T a week ago, after seeing him the week before, and reported the following:

• Headache continues since last weekend. Middle of head and behind eyes – worse when up. Better laying down.
• Nausea.
• Appetite affected.
• Mental confusion.
• Pain down back of neck – feels like my brain is being sucked dry.
• Over draining? Scared to do LP if I am. Bad experience previously.
• I also feel a tightness around my shunt in my head, sometimes…

Who can relate to “normal” diagnostic tests when your body says otherwise?

It’s not uncommon for my ventricles to remain unchanged. I’ve also written before about the importance of timing, when doing pressure monitoring, especially when you’re no longer symptomatic. It’s the main reason why I can see the benefit of a sensor to indicate, in real-time, what’s happening when you’re feeling unwell. Make no mistake, I am not disillusioned into thinking that having a pressure sensor implanted solves treatment failures. It doesn’t. It’s quite literally a way to be proactive as opposed to being reactive, which is the norm with this condition. An uphill battle for most of us with medical gaslighting adding a cherry on top!

Lumbar punctures are no fun!

I hate this diagnostic test. I know, “hate” is a strong word. But, after having a bad experience with it previously, I’m convinced it’s left me with a form of PTSD. Truthfully, this whole damned condition has had that effect on me, at one point or another. Knowing that the Kitea sensor is still 2 to 3 years away from coming to market, I asked Dr T: “Can we consider the M.scio pressure sensor?“. The alternative of being admitted to hospital to have ICP monitoring done seems like a waste, if I have to be honest.

I realised the next step may mean an adjustment of my shunt, but doing so blindly doesn’t fill me with confidence.

We discussed it at length, as he listened to my rationale. Thankfully, he concurred, and agreed to do it for me – the first of his patients. I know it’s been approved in Australia, however the hospital where he operates needs to give the green light. Something which is taking longer than anticipated…

*If anyone has either of these sensors implanted, feel free to share your experiences in the comments for others to see.

Neurosurgeons and hospitals should get paid for their services, but being unemployed makes for a tricky situation!

While I try to manage and endure the symptoms above, I continue to play the waiting game. At this point I’m fearing the cost of it all. While I have insurance, it’s the out-of-pocket costs that gnaw away at me. To be fair, I have no income since I lost my job of more than 11 years last year. And, my last surgery was less than 6 months ago.

Cost is a factor, especially when you have more surgeries in the same year

Normally, IF all agree to charge the medical gap scheme, this would amount to:

• Neurosurgeon – $500
• Assistant – $500
• Anaesthetist – $500

Thankfully, I’ve already had surgery this year so no need to pay the hospital excess! If it doesn’t happen this side of Christmas, the cost to me will only increase. And, I’ve already been told that my surgeon may not charge the reduced gap rate…

More importantly, after my valve replacement in July, I lost the new job I got in June too because of it! However, that didn’t stop me from hitting the job market again as soon as I was able to. While I await the outcome of my latest job application, the timing could not be more off!

What I’m learning, (the hard way) about this condition, is that we truly are at its mercy. And, I could not have been more right when I said; “Life happens while you’re making plans”.

But, I will sacrifice and dig into my savings. The benefit far outweighs the cost…

If I can ask one thing of you, please pray that the hospital will approve it, and I can have this surgery soon. More importantly, that it doesn’t cost me too much out-of-pocket, so that I can move on with (what’s left of) my life. Thanks in advance!

EDIT:

While I highly appreciate the offer of support from others, this post is not a cry for financial help. It is merely my way to convey some of the financial burden most of us face with this condition. I am fortunately not under financial strain at the time of writing this blog post.