Hydrocephalus: Sharing the joys of upcoming brain surgery and a lightbulb moment.

Hydrocephalus: Sharing the joys of upcoming brain surgery and a lightbulb moment.

A while back, I wrote a post titled, “When the thought of brain surgery “excites” you“. It would probably seem like a strange thing to write about but the preconceived ideas of a title like this, at first sight, couldn’t be further from the main reason behind it.

Walter Little has literally gone most of his life without treatment of his Hydrocephalus. A 55+ year-old, having survived it – untreated – up until now. You might wonder how that could possibly be. Well, Walter has arrested Hydrocephalus. You can read more about the treatment options here and diagnosing it here*. Honestly, I don’t even know where to begin with this or what my thoughts and opinions are about his situation. It would seem that everything I have ever read about this condition and the fact that you need to act when symptomatic, is challenged by the man anticipating a much needed and long-awaited brain operation. I have the utmost respect for the Neurosurgeon performing this operation and the obvious faith and trust Walter has in her – to me, this is very important. Most of us with Hydrocephalus know, some Neurosurgeons are a bit hesitant to operate, especially if the way in which the condition affects you, is contrary to what their textbooks say.

Similarly, the state of my own ETV (Endoscopic Third Ventriculostomy) is in question at the moment. Whether it’s failing intermittently is a question I am yet to have answered. If it is, or has been, the likelihood of that would span over the last 9 years by my calculation. Something, which just seems impossible to comprehend (for me at least) but, until I know for sure, I’m not in a position to say. However, reading up on arrested Hydrocephalus due to Walter and this post, I’ve had a lightbulb moment and am left wondering if this isn’t possibly what I’ve been experiencing too! (Not so complex after all…).

Some patients also complain of headaches or dizziness, or problems with their eyesight.

ETV, is the treatment choice offered to Walter for tomorrow. I am sure he is every bit aware of all the risks and possible outcomes, which comes with this, as any surgery has. However, I sense his excitement and joy at finally having someone take him seriously and acting on the condition which he has lived with…well, most of his life.

Please don’t misunderstand, not having surgery to treat Hydrocephalus does have consequences. There are many who have succumbed (and continue to), because they haven’t been given the treatment they need. The reasons why this happens is not something I can comment on fully or even begin to explain.

Maybe Walter and I are just two of many, defying statistics. Who knows..?

From the post I wrote, unrelated to Walter at the time, I can definitely understand and share in the joy he must be feeling right now. No-one wants brain surgery but those living with Hydrocephalus certainly need it. Despite all of this, make no mistake, there’s a medley of feelings which wrap around you like a cocoon, right to the point where the anaesthesia takes effect. The level of fear, anxiety, uncertainty and joy are only some of these emotions and all natural.

It’s evident that those who know Walter, especially in the Hydro community, are in full support and understanding of exactly what he is feeling at this point in time. Seeing everyone rallying around him, is what makes the Hydro community a family and, until you are part of it, you won’t necessarily understand.

All we ever want is for someone to take us serious enough and to help alleviate the pain, discomfort and chaos this condition thrusts on us. No-one wants to live in pain on a daily basis, waking up with debilitating headaches, experiencing seizures and the aftermath of what it leaves you with. It’s not attention-seeking, we are not faking, we are in fact, very aware of the signs and symptoms our bodies are giving us. We are merely here trying to live life as best we can and hopefully, live to see another day.

So, from one Hydro warrior to another, I wish you all the best with your upcoming surgery, Walter. I feel the relief despite you being in a totally different country and, if I could, you can bet I’d be sitting right there with you – every step of the way. Your smiling face just says it all so, keep the momentum going and know that you are not alone. We are all here, praying for you, sharing in your joy and looking forward to seeing your smile after surgery!

*https://www.swedish.org/services

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!

6 Comments

  • Fire Captain Little

    September 16, 2019 at 3:58 pm Reply

    Good morning Skye and thank you so much for such a sweet blog. I love you my hydro sister

    • Skyewaters

      September 16, 2019 at 8:44 pm Reply

      Good morning and, you are most welcome💙

  • Bethany Bacon

    September 16, 2019 at 3:46 pm Reply

    Will certainly be praying for Walter’s surgery. Thank you for sharing about that. You may have mentioned this, but when did you have your first surgery for Hydrocephalus? I was diagnosed shortly about birth; born at 24.5 weeks, in November 1983. I have never been offered the option of ETV. My doctors always say that my ventricles are too small for that (I assume, meaning if they attempted an ETV, it would fail probably quickly)

    But, I am having another shunt surgery (#13 since December 2016), on Wednesday, Sept. 18, due to a blockage. I know that if I were in Walter’s shoes, I would definitely feel the same ‘excitement’ for surgery, but honestly for me, I’m dreading it.

    • Skyewaters

      September 16, 2019 at 8:50 pm Reply

      Hi Bethany.
      I was diagnosed at age 29 and had a VP shunt placed, it lasted just over two years.
      I had a Neurosurgeon tell me once that the size of the ventricles doesn’t matter because they can use a paediatric endoscope. But, there are other criteria for doing it as well, it’s not an option for everyone.
      As for your upcoming surgery, I can definitely understand you dreading it. I will keep you in my prayers too for a successful outcome and good recovery🙏🏼💙

      • Bethany Bacon

        September 17, 2019 at 12:35 am Reply

        Thank you so much! So grateful to have someone to talk to who understands the frustrations and feelings of this. I went for 25+ years without issues, and now, since Dec. 2016, I feel it’s been one thing after another. It takes a toll that most people don’t understand; even doctors.

        • Skyewaters

          September 17, 2019 at 4:43 am Reply

          I get it 💯😔
          I hope this one brings longer relief🤞🙏🏼💙

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