Hydrocephalus : Patience while you wait…

Hydrocephalus : Patience while you wait…

It feels like waiting is one of the things you do a lot of with a condition like Hydrocephalus. Being a person with little to zero patience (I do try though), it can become quite “painful” at times. In saying that, the comparison cannot be drawn between just your average waiting for, “something in general” and, receiving attention for this condition. A more predictable condition maybe…but, one that has no real warning signs and has the potential to turn out your lights…now that’s a different story.

You wait:

  • At the emergency room for what seems like FOREVER….
  • To see if your symptoms will get worse before they improve. Then making the call on whether to seek medical attention or not.
  • For a specialist appointment, which can sometimes take months.
  • For surgery.
  • For an infection to clear before you can receive treatment i.e. Brain surgery.
  • For medication to take effect and prove it’s working.

An endless list…

Right now, I’m waiting to see a Neurosurgeon in 4 weeks’ time. Having had eye trouble and prolonged episodes of dizziness, both of which are new symptoms, since I saw her last. It does, however, feel so insignificant right now, especially since I’ve been “fine”. A slight headache now and then. Waking up at 3:30am, not being able to go back to sleep, and willing my body to conjure up the energy to complete a full day of work. I’ve been feeling tired on a daily basis and just overall filled with anxiety. Maybe it’s just a build-up of emotions as I don’t know what to expect (well, sort of). Pain and discomfort from time to time at my burr hole – Is that even relevant?

I drive myself to the brink with the scenarios that unfold in my head. I should’ve been a novelist, conjuring up all sorts of stories and endings…

The thing about having to play the waiting game though, you are the only one living your life with this in mind. The only one stressed and filled with anxiety of the unknowns which lay ahead. 24 x 7!

You are also, the only one who understands the scenarios of what could be. For example, I know my consult could highly likely turn into a surgery discussion. I am also very aware that it may just be another, “You’re fine“, pat on the back, go on your way kind of consult.

Meaning another wait and see if I become symptomatic again…then, back down the same rabbit hole…Ugh! I hate the yo-yo effect…

I often have people tell me, “You shouldn’t worry about what you don’t know”. And, while this is probably sound advice (and works for some), it’s not the way I function. We’re all different, I guess. So, you have to cope with and do what’s best for you. Personally, I like to be more proactive than reactive but that is not the nature of this condition – I KNOW THIS!

Honestly, I was ready to just give up (for a little while at least) until I got the call from the surgeon’s room offering a consult with her. It’s tiring having to deal with all this. The last 10 years or so have been quite draining. I was able to put it out of my mind long enough not to worry too much. I threw myself into my work and felt distracted until a recent (unrelated to my health) development. It seems to have triggered a new kind of fear and scenario building effect.

So, I’m back on track worrying and counting down the weeks. Patience is required in all aspects with:

  • Myself.
  • The physical time which needs to pass.
  • My body and how I feel at any given time.
  • Not knowing the outcome.
  • The people around me who are oblivious to what I’m going through. What ails them is just so small in comparison to the possibilities I’m facing…
  • Mentally preparing myself for if and when I become symptomatic while waiting for my appointment. (I sincerely hope and pray I don’t).

Thankfully I do forget about it long enough to breathe and, life takes over a bit. But I sure do wish you blessed me with more patience Lord because right now, I feel like my sanity is slipping away…

And, as I’ve said many times before, life has a way of carrying on despite what you’re facing – good or bad. I’m off to give my son his first driving lesson! I don’t know who’s more nervous between the two of us but, it’s the kind of distraction which builds memories and right now, I reckon that’s about as good as it’s going to get.

I’ll take it!


  • Bethany Bacon

    October 7, 2019 at 10:21 pm Reply

    Thank you for posting this! I feel the same way! One of the things that’s hard for me is hurting as much as I do, and the scan comes back ‘normal’, and so I’m not believed/taken seriously. It’s like they’re saying, well your pain is normal. Really??? Prior to Dec. 2016, I rarely got a headache. Now, I can barely work a part-time job. And, I had to give up a career I loved (CNA) because of this.

    • Skyewaters

      October 8, 2019 at 4:39 am Reply

      You are definitely not alone in that, I understand fully. The best advice I can give you is to not give up and accept what they’re saying. Find another doctor, travel if you are able and have to. The least we owe ourselves is to seek out the help we need. I wish you all the best🙏🏼💙

  • Pippa

    October 6, 2019 at 11:05 am Reply

    I can fully relate to you on the waiting and not knowing if, when you do see your consultant, you’ll be told, “it’s all fine”, or, “ you need more surgery ASAP”. It’s scary, frustrating, exhausting, depressing. I’m waiting to hear back from my neurosurgeon about the scan I had last week- I’ve been having symptoms that feel like something could be wrong for ages. Maybe intermittent shunt failure, or something like that. The nausea and vomiting has been happening now for about three years on and off- I’ll have 24 hours where I can’t keep anything down. There’s pain in my head, more at the back recently which is new. Headache and dizziness were bad when they scan me, so hoping something will show up. Fingers crossed you get some help to feel back to normal (as much as possible with this condition!) very soon! Hugs

    • Skyewaters

      October 6, 2019 at 8:22 pm Reply

      Thank you! Fingers crossed for both of us🤞🙏🏼I pray you get some answers too, it certainly sounds like cause for concern. Feel free to let me know how it goes💙

      • Pippa

        October 7, 2019 at 1:21 pm Reply

        Thank you! I will let you know what happens. Fingers crossed for us both 💗

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