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!