Hydrocephalus : More than just a dream…

Hydrocephalus : More than just a dream…

Some time ago, I asked the question “Will there ever be a cure?

The general consensus was “Highly unlikely…”, not something anyone wants to hear (I for one, don’t).  But, being a realist, I could see why this response had a common trend.  In short, there are too many causes of Hydro to produce one cure.

Makes sense… I guess…

This diagnosis, certainly isn’t a one size fits all, same condition – different anatomy.  Also, lately I’ve adopted the attitude of accepting the things I cannot change…it’s probably best (constant work in progress though).

So, it got me thinking…

There are only treatment options to:

  1. Insert a Shunt (leading to a few different body parts/organs), or
  2. An Endoscopic Third Ventriculostomy (ETV). 

Both of these options are NOT a cure but, for some, may come damn near close to one.  Others, well, they’re not so “lucky” and, require surgery more times than any sane person could conceive.   Simply put, said options CAN and DO fail, at any time…

I bet the first shunt or ETV procedure, provided an immense sense of hope for people living with Hydrocephalus.

However, decades later, more children are born with it, young adults (like me) and those of the older generation, are diagnosed with it. And, we’re all still either seeking a cure or better treatment options.

If we can’t have a cure, then why not insist on better treatment options?  Every thing over time has evolved and been perfected, why not our treatment options..?

The ironic thing about it all for me is, the very body we’re trying to keep alive by enduring countless brain surgeries, works against us.  But, it’s not like the body does any of it on purpose, to work against the efforts of Neurosurgeons, that is.  On the contrary, it does what it’s been designed to do…

For example:

  1. Production of Cerebrospinal Fluid (CSF) is a normal mechanism.  This useful fluid “acts as a cushion or buffer for the brain, providing basic mechanical and immunological protection to the brain inside the skull“. Washing over the brain and spine.  Some of our bodies, produce too much, too quickly.  (Did you know there are drugs which can reduce the production of CSF?  It might be something to ask your NS about next time, if this is the case for you).  The overproduction becomes problematic, especially when there’s an obstruction, with the fluid having nowhere else to go. Instead, it causes a buildup, pushing against the brain and wrecking havoc on the body –causing Hydrocephalus.
  2. Then there’s also the fact that the body self heals.  Any operation or simple cut, will see your body quickly going to work to “repair” itself.  I think of this as a messy spiders web, scar tissue forms, and attaches itself to just about anything close by. There are even cases where scar tissue causes obstruction of either end of the shunt or ETV, requiring you to have more surgery as it interferes with your treatment option.  Unfortunately, there’s no way around this one, the more you operate, the more scar tissue is created.  So, if you think that “cutting the scar tissue away” is a solution, think again…

I don’t want to be negative by saying there will “never” be a cure…because “never”, is a long time.  I prefer to comfort myself by saying, I dream of a day where better treatment options will be available.  A day where doctors could say with 80% certainty that the treatment option they’ve suggested or provided, will give you a good run for the next 2 decades.  The 80/20 rule would be a godsend in this regard and, one I could live with comfortably. But, that would mean Hydrocephalus is no longer unpredictable and we actually have some control over it…this is not the case…

So…is it wishful thinking?

Maybe…but, as long as I have hope, and a dream, I’ll pray this dream catcher will acknowledge my request for better treatment options.  Aligning my dream perfectly with the reality of those living with, (the unknowns of life with), Hydrocephalus.

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!

5 Comments

  • Anonymous

    April 22, 2019 at 12:41 pm Reply

    Is this for sell

  • Philip Mastromonico

    April 21, 2019 at 3:28 pm Reply

    Advances in the treatment of hydrocephalus will be slow to com, if they ever arise at all. I have crunched the numbers and hydrocephalus treatment constitutes a $2 Billion/yr. industry all by itself.

    • Skyewaters

      April 21, 2019 at 9:51 pm Reply

      I hate that money comes into any health equation. I just wish there were better treatment 💙

  • Susan K Jowman

    April 21, 2019 at 1:47 am Reply

    Thank you hot writing a blog about Hydrocephalus. I was diagnosed and VP chanted in 2016 at the age of 57. I feel lucky to be alive.
    Susan K Bowman

    • Skyewaters

      April 21, 2019 at 3:41 am Reply

      You’re welcome Susan😊. I’m glad you feel that way💙

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