Hydrocephalus: When You’re At A Crossroad In Terms Of YOUR Care…

Hydrocephalus: When You’re At A Crossroad In Terms Of YOUR Care…

I sometimes think this is such an unfair condition to have. One could argue and ask, compared to what? This would be a “relatively” fair enough question. But, I do feel, (as someone diagnosed with it, someone who knows the full extent of the pain and consequences of the diagnosis and, what you have to endure in terms of repeat brain surgery, including the unpredictable nature of the beast…) You, as the patient, have every right to feel OR think whatever you do, at any given moment in time. There are so many of them too, moments that is, where you feel or think different things. Each can be broken down and segmented one from the other because they don’t always intertwine or run off each other. Sometimes they don’t even make sense and can resemble a plethora of mixed emotions, making you seem like you’ve lost it!

FACT: Hydrocephalus is an INCURABLE condition. And, as much as the medical profession knows about it, there are equally as many unknowns…

Along my journey, the financial impact has never been far from my mind. When I looked at ways to help a mother in the Philippines a few years back, I discovered the huge financial discrepancies not only in care but the cost of shunts, surgery and treatment. There were so many other factors which made me cringe and left an incredible feeling of helplessness in me. The whole thing infuriated me to the point where I simply think this world has just gone mad! A world driven by money and financial gain…something you can’t take with you when you die anyway – makes SO much sense, doesn’t it!

I’ll be bold and ask the question too: “How lucrative is the business of shunts, Hydrocephalus and brain surgery?”. Is it worth a surgeons’ time and effort to help someone who constantly returns, knocking on their door, like the zombie apocalypse? (Don’t misunderstand. In asking this, it has nothing to do with them as a person either but more in terms if man’s incessant need for “more”).

Money is a driver. But, just how far will the incentives make someone go?

Obviously, issues like some countries’ currency being weaker than others are very much a factor. However, it still doesn’t explain why the hardware they put in your body, costs so much. Most of them don’t last very long anyway before you need to replace all or repair part of it. I’m not dismissing the fact that our bodies can be our own worst enemies as well with scar tissue, clogging up with particles, increased production of CSF, obstructions etc. Then, you have so many different types of shunts to choose from with recommendations from manufacturers who don’t have real life experience in terms of what’s actually going on inside of YOUR body and YOUR physiology.

For example: With a programmable shunt, how do they know what the correct setting is for a particular individual? Is it just a guessing game? Having had one of those myself before, I’m inclined to think it is. My NS at the time adjusted my setting, changing it from the manufacturersrecommended setting”, which left me half-comatose/semi-responsive and with slit ventricles, due to over drainage! He politely said; “Oh well, now we know that’s not the right setting for you…” and sent me on my way. (In fairness to him: I was probably at the paranoid Zombie apocalypse stage of the newly diagnosed – she says sarcastically).

What would not surprise me, is to find out that some of these surgeons simply don’t have a clue when it comes to us Hydro patients. And, as sure as I am that this is going to sound very contradictory, I say that with as much respect for the difficult job they have. I don’t envy them but, as a patient, I would much rather have you tell me you don’t know than have you “wing it”. In all thing’s life, I have more respect for someone who does that, as opposed to not. Furthermore, it’s quite sobering when you eventually look at the person (surgeon) as just that – a human being, just like you…Nothing more. They aren’t super human and don’t possess super powers!

As a Hydro patient, we tend to find ourselves in a Catch 22 situation most times when we become symptomatic. (Damned if you do, damned if you don’t!). I wonder; How hard do we have to push a doctor before we push them too far…? Is it really worth it? How often have you (as a Hydro patient) been in a situation where you’ve had to ask yourself; “What am I prepared to take and how far would I go?” or “How much pain am I willing to bear before I seek medical help“. I’ve certainly been here, many times before (I’ve lost count).

It’s a matter of deciding:

  1. Am I happy to continue living with the pain, discomfort, unpredictable nature of the condition, etc.? OR
  2. Do I push for further investigation? Be it:
    • Imaging which potentially shows everything is normal (even when there could be a problem), or
    • Lumbar puncture, or
    • ICP Monitoring, or
    • Surgery

None of which come without a consequence.

You know you have to make the “right” decision for yourself but what is that really? I’ve gone to and fro trying to make the call before and to be quite honest, it never really feels like the “right” thing. If I don’t do anything, I could be causing more harm to myself in the long run. If I do push for surgery, it could go perfectly as planned BUT it could also give rise to some complications (which I’ve experienced before). No one can say with 100% certainty that if you were to have surgery, it will be a “walk in the park”. (And yes, ALL surgery comes with risks – not disputing that). It’s a nirvana I won’t fall for again, instead I would probably approach it expecting the worst, despite the amount of faith I might have at that moment in time – as human nature kicks in. Regardless, whatever that decision is, YOU have to make it and (more importantly), it has to be the “right” one for YOU!

No person has the right to have an opinion on the matter, more than you…

In my last post, I mentioned that I had binge watched Lenox Hill. I recall one patient who felt that she would not have any further surgery when her follow-up consult revealed unfavourable results. What she alluded to was that she would rather be left to die in peace because that was it for her…I think the older you get, after the fight to be heard and everything else you put up with on this uphill battle, it’s easy enough to come to this conclusion. (Disclaimer: Most days I feel like I’m leaning towards this stage…)

So, coming back to the crossroad. Which way would you choose to go? Are you “OK” to live with the pain, discomfort, unpredictability, etc – letting things take its course? OR. Would you keep fighting, enduring more of the same with a touch of the unknown?

Published by Skyewaters

I blog about Hydrocephalus to give a voice to the millions (if not billions) of people around the world with this condition NOT disease.  As much as these experiences are unique to me and my family, I’m sure others have experienced it too.  My aim…to shine a light on it and raise awareness – simple and challenging at the same time but worth it!

4 Comments

  • Lokesh Umak

    July 18, 2020 at 1:05 pm Reply

    Well done 👍

    • Skyewaters

      July 18, 2020 at 9:48 pm Reply

      Thank you💙

  • Cindy

    July 9, 2020 at 9:31 am Reply

    So relatable. Thank you. I feel like you were speaking for me. This has been an exhausting struggle and it feels like the choices I make in care always end up back in a surgery or something major. If I just deal with it, nobody is fussing about it so its easier to live with the pain because i know that surgery brings on new or increased issues that I’m not willing to risk. I’ve come too far with understanding my issues now and how to prevent unbearable pain in most instances and if i can’t prevent it, I know what to do in most instances to alleviate it. I don’t want to have to spend years to learn the same for a new issue or new issues and I certainly don’t want to make the current issues worse in any way which I know is a huge risk. I’ve also found myself many times now in the same condition thinking that I just can’t live like this anymore and am okay with failing. I’m not a sad or depressed person. Its just the reality of living with it for so long with no real solid treatment to no pain in sight. You get to a point where you see life moving all around you while you nervously watch knowing that you’re taking a risk in hurting worse by participating but also knowing that if you don’t, the lack of exercise will kill you too so yes, fanned if you do, fanned if you don’t. There’s no solution. Im a planner but you can’t plan anything like this because you never know when you’re going to be hurting too much and you don’t want to disappoint anyone. Especially yourself. I hope that someday soon there will be a cure that doesn’t include failing equipment with the constant fear of said equipment failing. It makes you in a constant pattern of waiting for the worst migraine of your life to come on again that will put you in so much pain, you want to die. That’s no way to live.

    • Skyewaters

      July 10, 2020 at 4:28 am Reply

      I could not agree more…you get it, others do but some don’t…That’s OK.
      I’m thankful for those that do!
      Your comment is appreciated 💙

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