Time…How a day can seem like an eternity

Time…How a day can seem like an eternity

Four days ago I was “fine” and now, each day closer to the next feels like an eternity as I will time to pass quicker.  Time, something which feels like a luxury, a priceless possession I wish I had more control of, with a dash of patience.

I’m at a crossroad (again), one no doubt many of you have been at too before.  And yet, the heart of this post did not simply rear its head four days ago.  It’s been a buildup over the last few months (or quite easily, the last few years).

At this point in time, I have spinal pain which hasn’t eased up at all over the last 2 weeks (or more…I forget). Waking up with headaches in the morning which improves after being upright for a while.  Nausea but no vomiting and, dizziness which had me slump back into bed this morning.  I couldn’t adult so stayed home, slept all day and didn’t make it to work…

I’ve had headaches which have increased during the day over the last few weeks (something which piqued my interest momentarily yet, lingering in the back of my mind).  That nagging “weird” feeling inside my head where my ETV is increased, becoming more prevalent throughout the day.  And, a feeling of fullness in my face.  I tried all the other approaches and checked my diet, made sure my bowel movement is regular – ruling it out as the cause of the nausea and possibly the headache as well.  I’ve done sinus rinses in case that was the culprit, no improvement.  I’ve become more confused at times and unable to focus, feeling sleepy all the time and just weak.  (It very well may be the lack of appetite I’ve had – I’m on a forced eating regime of at least one meal a day at the moment).  In fact, I found it a little weird that my bladder remained full and in working order despite the lack of fluids I’ve had but, I may not be knowledgeable enough as far as that’s concerned.  Or, maybe I’m just stressed…

With all of this staring me down, I have a surgeon in a different city who has reviewed my medical notes and wants to do some “invasive” Intracranial Pressure Monitoring for 48 to 72 hours.

This diagram shows you exactly how this is done

At last!  Someone who is prepared to listen and take these symptoms seriously.  But, it has me stressfully anxious because of the De Ja Vu nature of the situation.  (Anyone who knows my story will know what I mean).

The nutcrusher…

Time, oh sweet time…

  • I’ll need medical approval to have this done privately because I’m in a different region so can’t be treated through the public system.
  • It’s Friday and going to the ED isn’t a plan – limited resources and it’ll just be a pain management exercise.
  • Said surgeon only works in his private practice on Wednesday’s so I’m reliant on his secretary to communicate back and forth when he’s available.
  • I’m hopeful of getting an MRI with flow study done, which only he can request but, only when he’s availableso I wait.
  • I’ve had the good sense to book an Ophthalmology appointment for next Thursday to do a comparison of my visual fields to last year this time.  The combination of these two tests will hopefully highlight any issues.
  • And, the biggest one of all.  What if I do need surgery?  Do I travel out of town?  (Stressing about the financial burden and lack of support)  Or, do I chance being placed on the on call surgeons list (locally) and risk it being one of the two surgeons who previously dismissed me on too many occasions?  (I have no faith or trust in either of these two messing with my head – but what’s the alternative..?)

Amidst all of this, I rest my body because that’s all I can do. If a snap of my fingers would get me faster results, I’d be clicking away…all while trying NOT to think ETV failure 🙏🏾

PS. This post has not been easy to do but sharing it here helps me keep track.

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!

7 Comments

  • Michelle Tetley

    August 4, 2018 at 1:02 am Reply

    Wishing you all the best. Hoping you find solutions to the challenges you are facing. The uncertainty of hydro is often frightening. Thinking of you and hoping you find people who can do what needs to be done to get you back to good health

    • Skyewaters

      August 6, 2018 at 7:55 am Reply

      Thank you Michelle, that means a lot . It certainly is frightening and in this case, very frustrating.

      • Anonymous

        August 6, 2018 at 11:21 am Reply

        Be patient with yourself and kind to yourself.
        Let us know how you go. Rest assured, we are thinking of you.

  • Pippa

    August 3, 2018 at 11:39 am Reply

    Sorry to hear all you are going through. I hope that they can work out what’s going on and sort it out quickly for you. Hopefully surgery won’t be required, but if it is, I hope that you can be treated quickly and by a surgeon you feel confident in. Feel better soon, keeping you in my thoughts.

    • Skyewaters

      August 6, 2018 at 7:53 am Reply

      Thank you Pippa, I truly appreciate your comment.

  • Karen DeBonis

    August 3, 2018 at 11:26 am Reply

    I’m so sorry you’ve had such a tough time lately. I hope you won’t need surgery, unless it will help relive your symptoms. It’s hard to know what to hope for in these situations sometimes. Mostly I hope that you get relief and answers.

    • Skyewaters

      August 6, 2018 at 7:53 am Reply

      Thanks Karen. It certainly isn’t easy but fingers crossed. Relief is all I want at this stage, whatever that may be.

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