Hydrocephalus: Same shit, different country…

Hydrocephalus: Same shit, different country…

There seems to be a universal law when it comes to the way we are treated as Hydrocephalus patients.  (Or, I’m just being overly sensitive – you be the judge of that).  I know for a fact that, what I’ve experienced below and so many times before, is not unique to me alone.  There are many people with Hydrocephalus (thankfully not all), in exactly the same boat.  Some of us avoid seeking medical help, simply because it leads down the same path – over…and… over…and… over again!  Something, I personally, would love to see change. 

I’m struggling to see the difference between where I was, when I started on this Hydro journey, to where I am now.  Regardless…the countless situations, which evoke so much anger and frustration in me, do end up teaching me some valuable lessons.  Sometimes, I’m caught off guard when I reach the point of outward explosion, within a matter of seconds.  I lose my shit, and literally feel every part of me being affected, as my emotions rise.  I never go into these situations looking for a fight or for it to end in a negative way.  Why would I? 

What exactly triggered the last outburst, and consequential emotional spiral, I honestly don’t know.  I don’t think it was one specific thing but, a culmination of a few triggers hit all at once. 

The short version (is there ever one?): 

Visual disturbances a few weeks back, increase in daily headaches, more frequent sleep disturbances (after quite a few nights of sleeping like the dead).  Fast forward a few weeks, tiredness, loss of appetite, waking up with severe dizziness and nausea – lasting all day (24×7), for two weeks before easing up.  Feeling like someone is dangling me by my feet, upside down, from the side of a tall building – like I’m about to fall.  I literally woke up feeling this way, from morning to night.  Laying on my bed, in a half sitting position with my head against the pillow, was the only way I could function. 

By the end of Week 1, it bothered me to the point where I felt the need to act and seek medical attention.  Quite simply, I kept hearing that little voice inside my head – it was more my GP, insisting I go to the hospital if I need to and the category 1 triage letter, waiting for my appointment.  However, a visit to the Emergency Department at that point in time, ended up taking me quite by surprise. 

In a nutshell, it went nowhere.

I went in calmly, hoping for the best though silently expecting it to end like all the other times before and, I stormed out a boiling pressure cooker, threatening to explode!  

In hindsight, there were probably a few triggers (in no particular order): 

  • Having to explain myself over and over again to the Asian doctor (A member of the Neuro specialists team), felt like we were playing Chinese whispers.
  • Or having to repeat myself, ultimately, speaking slowly so she could understand what I was trying to say.  No matter how hard I tried, she just wasn’t hearing me and, I sensed a familiar de ja vu moment where I knew the outcome before it even happened.   
  • It may very well be that when she started advising me to rather opt for using my Private health care next time to get faster attention, that I sensed familiarity.   
  • I explained that my GP insisted I come to the emergency and trying to get in to see my Neurosurgeon would take months.  She was convinced that I, “should manage to get an appointment within 2 weeks, at least”, if I were to see my Neurosurgeon privately… 
  • Maybe it was the fact that I told more than one doctor, I saw that night, the CT scan they insisted on doing, wouldn’t show anything.   
  • The CT scan results were conveyed to me with a smile: “Since your CT is clear, we won’t be doing anything for you today…”.  A more than 4-hour wait later! (What the hell was I supposed to do about the dizziness?!!!
  • Her response, to my questioning the vision issue of a few weeks back, “But it’s gone now, right?”.  As if it lacked relevance… 
  • I calmly asked her if the letter I received alluding to an appointment at the hospital, would end in the same way, she eventually answered, “Yes”.  “So, I won’t come and waste my time then...”, I told her politely. (Guess I now know how to feel about it!)
  • Or, maybe I was just very aware of how I was cognitively struggling to string my sentences together while trying to maintain my composure.  The dizziness and nausea were overwhelming…  
  • I had to explain to the younger ED doctor what an ETV actually is, (after he asked as he hadn’t heard of it before).   

Whatever it was, the cherry on the cake, which caused my inevitable explosion, was hearing her say (more than once), “The CT shows no sign of Hydrocephalus, there is no Hydrocephalus…” 

I turned to her, looking her straight in the eye and said: “Hydrocephalus does NOT just go away so, don’t say it isn’t there.  In fact, if you said there’s no sign of pressure, that would be a much better way to put it!”.  She responded, “I know what Hydrocephalus is” and I bit back, “So do I, I live with it every day!”  She knew I was pissed off…giving me a disapproving look, as I walked out of the room.  Refusing to listen to anything else she had to say.   

I knew what she meant nonetheless…but, I’ve just been here SO many times before (a different country though) so, I kinda knew it was pointless. 

It wasn’t exactly how I saw this going...I actually had HOPE. 

Having the usual fallout with my husband after, didn’t help either.  His infamous question/statement, “But what do you expect them to do?  You keep coming back and they keep saying the same thing”, shut the door on the spiral staircase of depression I had seemingly begun my descent on.   

By Sunday, I decided to make an appointment with my GP to get some blood tests done in case something else was causing it.  My thyroid maybe or possibly the lesion in my abdomen – who knows?  (This was me not jumping to ETV Failure as the only and main culprit…or at least attempting to).  I also remembered the repeat MRI request form the Neurosurgeon gave me in March, (in anticipation of me needing it) and went to have that done.  Results still pending. I then made a follow-up appointment to see her again – I got one for mid-November! (That’s 3 and a half months away).  Two weeks…my ass! 

The way I see it, this situation is bloody ridiculous!  It leaves me feeling helpless while life, as usual, carries on with its demands and “normalcy”.   

I do have something to be grateful for though but, more on that in my next post. 

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!

4 Comments

  • Andrea

    September 2, 2019 at 4:27 pm Reply

    Thank you for sharing, my daughter experiences much if not all of what you describe in your blog…I’ve been jumping through flaming hoops with Social Security Disability for her for a long time now. We have not yet finished going to “their” doctors. The SSD nurse had the audacity to say “I’m a nurse & Hydrocephalus is not a disability in and of itself…” I can’t even began to tell you what profanities I used when answering her ridiculous statement. So I will continue to fight FOREVER for my daughter (She’s almost 22 years old) our saving grace…her neurosurgeon, he is GOD in my book.

    • Skyewaters

      September 2, 2019 at 8:38 pm Reply

      It sounds like you’re being the best advocate for your daughter, that’s great! We all need someone like that especially when we don’t feel good.
      They don’t always know better, we won’t always agree with them and that’s probably the biggest reason why we need to keep pushing to be heard. Also sound a like she has a good Neurosurgeon which in itself if something to cling to, they’re a rare find💙

  • Bethany Bacon

    September 2, 2019 at 3:28 pm Reply

    Thank you for sharing your complete experience so far. Reading it, it sounds similar to my experience. One of the NP’s on the neurosurgery team I see, comes off as very harsh and literally laughs at everything I say as I describe my situation. I am so sorry you have to deal with not compassionate medical personnel…that’s one of the worst things…people who are supposed trained to treat us with dignity and respect; wouldn’t it be nice if we earned as much money as they make?!

    • Skyewaters

      September 2, 2019 at 8:34 pm Reply

      You’re welcome!
      I agree, it would be nice to deal with more compassionate medical staff. I know they’re out there though, that’s what keeps me going back…
      It sounds like you’re having your fair share of it too. I’m sorry about that…I hope things improve for you💙

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