What’s a girl with Hydrocephalus to do..?

What’s a girl with Hydrocephalus to do..?

Fighting against doctors while you believe that something is wrong with your shunt or ETV, feels like a daunting thing to do. Helpless is the number one feeling that comes to mind.

I remember when my shunt was failing, I fought about as hard as I am now to be heard. If that experience has taught me anything, it would be to not give up. To listen to my body first and foremost. (Easier said than done…)

Does it mean that I don’t feel scared or helpless anymore? Well, no…because I do (probably more so now than ever before).

If I had to be completely honest, it leaves me wondering if my relentless nature is not somehow pissing off these doctors. It also leaves me wondering, at what point will they say they’ve had enough of me saying something is wrong when all their tests prove otherwise. Will it make them throw me to the curb and refuse to treat me (tactfully of course) or will they eventually just drill a hole in my head, just to shut me up? The second scenario leaves me with all sorts of possibilities and conspiracy theories, none of which end well for me… (Oh the joys of an overactive imagination…NOT!). I suppose the question arises then, how much does it take for these doctors to reach their breaking point and operate regardless of going against their academic grain..?  Hmmm…

I’m beyond reason in my analogy of the whole situation.  In fact, I no longer trust what I think I feel simply because I can’t tell the difference anymore between what’s real and what’s not.  It feels like I’ve slipped into another world and have absolutely no idea who or what I am.

Ultimately, I can’t really say that either one of the two scenarios above, fill me with much peace. If anything, it stresses me out to the max. I sort of feel caught between a rock and a hard place simply because I know I can’t ignore the signs my body’s giving AND I don’t want one of the two scenarios above to come into the equation either.

What’s a girl with Hydrocephalus to do..?


  • fromlilou2you

    August 3, 2017 at 2:58 pm Reply

    I agree with is whole heartedly! Unfortunately we, the ones with hydro, explain our symptoms to the masses only to be ignored, misdiagnosed, misunderstood, or ridiculed worse yet by family and friends who can’t fathom what ur going through so they chose to label u as “crazy” or “lazy”, in my case as I also have narcolepsy, haha, I’m a sleepy head, so of course u know that means I’m lazy as hell,lmfao! Hydro sufferers are lonely I agree cuz u have to put a smile on ur gaping ma for others to appease them, so they feel good, at ur expense. I did this for quite a long time, mostly out of guilt for feeling like I let down my family, but then I realized I can’t physically, mentally or otherwise do it anymore, this is a real condition, with real circumstances, and symptoms. Sorry for jumping on the bandwagon lol, I feel for u, and if u need a good neurosurgeon I recommend dr.Das in Toronto, Canada, amazing, literally saved my life!

    • Skyewaters

      August 3, 2017 at 8:44 pm Reply

      Thanks for that! Feel free to jump on the bandwagon anytime. It sucks having Hydro and I’m starting to realise just how much I’m giving up at my own expense too.
      As for needing a good surgeon, I most definitely wish I had one BUT saying I’ll hop on a plane today and go to the US or Canada to see one, is just impossible. If I could…believe me I would. I’m glad you have a good one, they’re a diamond in the rough…

  • Jill

    July 31, 2017 at 8:20 am Reply

    You have to fight on sad but true. It’s beyond me how classic symptoms ca be ignored I am fortunate so far. Before I got my shunt I was ignored. I suffered violent headaches. I couldn’t walk properly and I was diagnosed with stress can you believe that. So how can family help or know what to do when the professionals don’t help . Hydrocephalus suffers have to be tough and battle it’s a very lonely condition.

    • Skyewaters

      July 31, 2017 at 8:43 pm Reply

      I fully agree. And, our stories and journeys are not that different. Too many people saying the same thing. Wish I could do something to change the way our condition is treated by the people we go to for help.
      Thanks for commenting.

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