Hydrocephalus…It’s not OK!

Hydrocephalus…It’s not OK!

A diagnosis of Hydrocephalus, caused through no fault of my own, is something I can live with. I’ve had to learn so much in order to cope and, more importantly, accept this new way of life. It’s a constant learning curve!

I don’t exactly have a choice. None of us do…

You question. You cry. You get angry. You feel depressed. You live in limbo. You’re positive. You’re negative. You have moments of sadness but also joy. You become complacent. Your anxiety levels ebb and flow…

Whatever your reaction is, it’s yours to have.

I’ve gone through all of these emotions but a few weeks ago, I struggled to get back to my “norm”, whatever that is. I know I have one…sort of!

I’ve since realised, there are so many things that’s just NOT OK with this condition. My fight thus far, the obstacles I’ve had to overcome (and still continue to face), my struggles are all not unique to me, I know this.

Too many of us go through the same…and worse. That’s NOT OK

It’s NOT OK for medical staff:

  • To be dismissive of our symptoms and, in some instances, expect us to just get over it.
  • To let patients, feel like they’re not being heard.
  • To cause patients to feel like they’re a burden or nuisance.
  • To make you feel like it’s all in your head and incorrectly diagnose us as being depressed.
  • To follow the principle of Do no harm when inaction will yield exactly the same result.
  • To play ping pong with us between Neurosurgeon and Neurologist because we are “complex”.
  • To be incompetent and clueless about this invisible, yet all too common, condition. (I wish they could have the view I have of just how widespread this is).

Does the fact that this condition is invisible, warrant some of the treatment above?

I think not!

As a patient, how many times should you forgive and forget the inept care you receive, because of their lack of knowledge? Debatable…

How does that help when you don’t get the care you need, when you seek it, ESPECIALLY when time to act, is a major factor?

It’s NOT OK for those around us (Some are closer than others):

  • To expect our demeanour to be positive and smiling when inside our soul is struggling under the weight of this condition.
  • To make us feel like our life is not worth it and that the bad hand life dealt us, is something to just “suck up”.
  • To mourn the loss of us once we’re gone because the time to show you care, is now!

The challenges are real. The pain is unbearable at times, regardless of whether or not those around you can see it.

It’s NOT OK for us:

  • To live with pain and fear because, quite simply and honestly, WE understand this is an incurable condition. WE know the potential it has to kill us. (Not that easy to live with this knowledge).
  • It’s NOT OK to repeatedly endure brain surgery as the only treatment option because Shunts and ETVs CAN and DO fail, at any time.

IT’S. NOT. OK!

Lately, I’ve been seeing so many posts of parents holding the hand of, or cradling, their lifeless child (some only a few days, weeks or months old), or kissing them goodbye for one last time. Hydrocephalus being the cause of their loss. Or parents who are unable to afford medication or ointment for their child who has developed an infected bedsore on their head, because they aren’t able to move. A factor which prohibits them from having the surgery they need to reduce the swelling of their head. (In most cases, the lack of money plays such a big part in all of this). It breaks my heart…

If any of this is OK, does that equate to the same stance when, and if, I decide death over life?

This condition is a conundrum of note and no easy one to live with or much less treat effectively. I’m not completely against all doctors. If I were, would I keep going back?

If I had to be honest, I don’t envy them any more than I do myself or anyone else diagnosed with this condition. It’s not easy treating something you literally cannot see. It’s not easy deciding if what your textbook and research material tell you is more valid than the person in front of you, presenting with symptoms outside of the norm.

What is that anyway? The “norm”, in the grand scheme of Hydrocephalus…?

Even if I’m not as badly affected as most others, it doesn’t mean that I don’t see, acknowledge or empathise with their pain or struggles. Most of all, it doesn’t mean that I don’t live with some degree of “that could happen to me…”. I don’t necessarily think it’s the same as living your life in constant fear of something bad happening. However, it’s being mindful of the reality which others are oblivious to and knowing there’s not a damn thing you can do about it.

FACT!

No one else is going to fight for this life of yours. No one else is going to give as much as you do. Shine the spotlight on the world of Hydrocephalus and give a voice to those who need it the most.

Start by saying: It’s NOT OK! (#ItsNotOK)

8 Comments

  • Anonymous

    February 2, 2020 at 6:49 pm Reply

    I’m another hydro sister. Surgery 2010. Thank you for your fighting words. We are in the ring and their is a cheering crowd getting bigger. You see we look normal on the outside, but our mri’s and CT’s show that we “aren’t the norm” on the inside. What is really cool is we have a voice, before we just became demented, slow, confused, etc. I truly believe doctors don’t have answers so they keep moving you around creating a false hope that this will all go away.
    I get headaches, sometimes I just feel funny in the head, fall asleep real easy, get my words mixed up sometimes(way less since my surgery), and live with a relentless pulsatile tinnitus. I sleep on 3-4 pillows at night.
    I can still think and I’m grateful. Dr. Michael McDermott at UCSF told me after my surgery ”go change the world”, do something to make difference. Well I’m still a working hospital nurse and always give patients hope no matter what, have helped two kids in a different country finish high school , and I help local communities. Not done yet. This has slowed me down, but hasn’t stopped me. Funny thing”the fight song” just came on the radio??So many diseases out there and we get hydro. Who would have thought. It takes grit to keep going, but what else you going to do? I applaud all of you. Keep fighting.
    I truly believe that the medical industry needs to sit us down and say this is what you can expect from this disease and help find symptomatic relief while they work on better treatments.
    My mom always use to say, “never say can’t”, “put yourself where you want the world to find you”, “don’t feel sorry for your self”, wipe the dirt off your boots and keep going.”
    I like to think, I’m making lemonade out of lemons?
    Thanks for being there. I don’t feel alone❤️

    • Skyewaters

      February 2, 2020 at 10:09 pm Reply

      Thank you so much for sharing and commenting. I can see a big benefit having you in the medical profession simply because, should another person with Hydro cross your path, you’ll have a better understanding than most. Sounds like you are making a difference and that’s always a good thing.
      Let’s shine the spotlight together ?

  • Cindy Hirsch

    February 1, 2020 at 8:43 pm Reply

    HUGS and KUDOS to you once again my hydrosister! It’s NOT ok that with every surgery, we experience (TBI) traumatic brain injury and are left to deal with the physical and psychological effects and aftermath it brings. The visits, treatments, and surgeries can add up to some relief but can also start a host of problems. Who knew PTSD was not only just for combat veterans? My Hydro did not cause my recent PTSD, the careless words and actions of 2 neurosurgeons and months of neglect did. I am finding my voice, in part from you and your posts, to say, “it’s NOT OK, I want more out of life and I expect better treatment.” Thank You.

    • Skyewaters

      February 1, 2020 at 10:19 pm Reply

      Right back at you with the hugs and kudos!
      All very real and serious after effects which some medical professionals don’t take serious enough…hang in there!
      It’s good to know you want more out of life, strive for that Cindy.
      Thanks for commenting ?

  • Jennifer Lane

    February 1, 2020 at 4:23 pm Reply

    THANK YOU!!! This is a great post. So real! Keep making noise. We need to be heard. It I’m my hope that one day, we will be understood!

    • Skyewaters

      February 1, 2020 at 10:15 pm Reply

      You’re most welcome. I hope so too??
      Thanks for your comment ?

  • Susan Herring

    February 1, 2020 at 3:37 pm Reply

    I find your thoughts to be ‘spot on’! The last three neurosurgeons I saw all treated me as if I was an incompetent boob! I got no answers to my questions or concerns – rather they stood silently staring, as if to say “are you done now”? Because it was obvious they DID NOT want to try to help me – I just quit going and not seen a doctor in 18 years.

    My tears of frustration were reminiscent of those shed over the 8 months and 15 different doctors I went through to simply get a diagnosis. So wish that compassion and care for a patient was taught in medical school!

    • Skyewaters

      February 1, 2020 at 10:14 pm Reply

      I’m so sorry you went through that but sadly, it doesn’t surprise me either as it’s mostly been my experience too.
      As for the added teachings, I couldn’t agree more.
      Thanks for sharing ?

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