“Manage it…” your Hydrocephalus that is.

“Manage it…” your Hydrocephalus that is.

After my last post, I realise there are a few choice words I could possibly use to describe how I was feeling.  I literally lost the will to live and wandered around aimlessly, feeling like I had been crushed in all aspects.  If you read the closing line, I think you’ll get the picture…

The consult I had a few weeks back (needless to say from that post), did not go as expected (or maybe it did, depending on how you look at it). I’ve had the same result over and over again for the last 5 years especially, so much so, that I anticipate the outcome and probably predict it with 99% accuracy. So, there are a few things I took from it and have now chewed on it to the point where I can once again share it with you.

I struggle to remember most of what’s discussed at these consults and have often had the thought to record it just so I can play it back to myself. Also, if the doctor says something that catches me off guard, I stop listening and try to process it and, miss everything else that’s been said afterwards. Like the time I was told that I have slit ventricles and can, therefore, go into a coma.

So…I (secretly) recorded my consult and the more I listen to it, the more I become faced with the reality of my situation. Whether I broke some kind of law doing it, I don’t know and I can’t say that I truly care. The way I figured it if anything should happen to me, then at least my family have proof that I sought help and had the door closed on me. However, you can’t sue doctors here, so not really sure how much good that’ll do. The effects of desperation I suppose…

The doctor who began my consult is new and I really felt like he was listening to me. He offered to do a lumbar puncture and was open to the possibility of “stranger things happening” regardless of the results of my MRI. Bottom line is, my ETV is patent and there is flow. The obstruction in my cerebral aqueduct is noted in my MRI findings, validating that this is the reason why I have Hydrocephalus.

Unfortunately, he went and consulted with the Head surgeon, the same one with the God-like complex and that’s when it all turned to custard…or maybe more like sour milk!

I’m sure it’s apparent but, I don’t think very highly of this [fill in the blank with whatever your brain conjures up] who was adamant that they “would not be operating on me” but that my “Hydrocephalus needs to be…managed“. No talk of actually figuring out what’s causing my symptoms and totally disregards it when I tell him about people who have open ETVs and have actually needed further surgery.  (These people have become my lifeline and aren’t merely people I’ve read about.  They are 3 phenomenal women whom I have come to befriend).  He didn’t provide any solution or action plan when I asked “How do you propose to manage it?” other than “Oh, I won’t manage it, we’ll just pass you back to Neurology” as if I’m a flippen parcel.  The same Neurologist who wants to put me on anti-depressants, yeah right!

At least he didn’t shoot a hole in my question of this seeming like “intermittent failure“, he just agreed that it’s a possibility.

Meh! This is BS…(Brain surgery of course).


  • Kelly

    August 12, 2017 at 12:32 pm Reply

    I am soooooo very sorry you aren’t being heard. At. Freaking. ALL. If you had these symptoms as a child, they wouldn’t think TWICE about giving you a shunt!!!

    In the middle of my hell of trying to get treatment after almost 13 years of my ETV, brain, and body maintaining a happy balance of CSF production, flow, and absorption, I prayed to fall into a coma like I did with each shunt failure. Prayed and prayed, I tell you! But I didn’t and wouldn’t and will probably never because my ETV is still allowing CSF to drain out of the ventricles. The pressure TOTALLY builds up, but never enough to knock me out or to create any sizable difference in the size of my ventricles.

    I wish I had answers for you! The only thing I can tell you right now is that you’re NOT crazy! For better or for worse, we’re pioneering this aspect of adult care with hydrocephalus. That perspective has saved my sanity a little bit… However many years from now, NO ONE with returning symptoms of hydrocephalus after a successful ETV will have to deal with neurosurgeons (who should KNOW BETTER!!!) not exploring the idea that yes, the ETV is patent and there’s plenty of CSF flow… but CLEARLY, the patient is experiencing too much CSF in the brain and spinal system for whatever reason (it’s a blockage and reabsorption problem for me right now) and they probably need a shunt.

    Ugh, but for now, we don’t have a choice but to scream loud and long so others don’t have to deal with this nonsense.

    • Skyewaters

      August 12, 2017 at 8:36 pm Reply

      You are one of the reasons why I keep getting back up and fighting to be heard. Your journey has taught me that “stranger things can happen”.
      I too have prayed…for many things, lost my faith and will humbly ask forgiveness for that. But, I am back on my journey and am going to get the help I need, one way or another.

      Thank you Hydro sister 😘

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