Hydrocephalus: Category 1 triage – Not sure how I feel about that…

Hydrocephalus: Category 1 triage – Not sure how I feel about that…

A few weeks ago, I wrote about the visual disturbances I’ve been experiencing.  Something, which at the time, freaked me out (naturally).  I went to the eye clinic upon my GPs insistence and walked away with a clean bill of eye health.  However, I was told a referral would be done to the Neurosurgery clinic to investigate further. 

Suspicion of the visual disturbances being linked to my ETV possibly failing, have been the main source of concern.

Then, a few days ago, I received a letter which stated: “We have received your referral and it has been triaged as category 1.  This means it is clinically recommended that your appointment take place within 30 days…”.  That is, 3 weeks to go, since the letter was dated.

I don’t quite know how I feel about it (A bittersweet moment for sure). You see, the last 7 years have made me immune to the up and down motions of this condition.  More specifically, the attitude medical professionals have displayed towards me.  I’ve been ignored and brushed aside so much, that I’ve become used to just “sucking up” an episode and, going about my day till the next occurrence.  Also, I haven’t had another visual episode aside from the 3, mentioned in my post.  Therefore, in my mind, that equates to “it was just that one time and is probably nothing”.  This is despite me having been concerned at the time and shoving it to the back of my mind.  Life carried on since then and now I stand at a fork in the road, yet again

Not quite sure what to make of anything, much less know how to feel…

I mulled over whether or not to tell my husband and cause him unnecessary concern (something I don’t like doing).  Or, to just keep it to myself, go to the appointment when the time comes and just, say nothing.  (I might just end up walking out of there with no action being taken and a warning to keep an eye on things). Or, this may just be the sign the surgeon has been waiting for, alluding to this moment anyway.  (She did say she would probably see me again before my next annual MRI next year – words which have haunted me since).  Alternatively, it may just be that they actually understand the serious nature of this condition and therefore, aren’t going to take any chances. 

Differences in care over the years have just increased my paranoia, mixed with my analytical mind…equates a dangerous combination.

I went against my better judgement and decided to tell him anyway.  His response, though not surprising, is what prompted today’s post.

Our reactions to the letter differ:

Me, a bit stressed and freaked out.  Overthinking as I do with almost everything in my life (hate this about myself).  Like I said, I almost reached a point where I put it out of my mind and just carried on per normal.  Truth be told, I assumed my referral would probably get thrown out because it’s not deemed “serious enough” and doesn’t warrant any action/investigation.  However, I sense the serious tone of the letter and am aware to not take this matter lightly.    Especially since I’m trying to work on not downplaying this condition.  I will be heeding the advice given in the letter to “seek medical attention”, should I need it.  Probably a standard recommendation...

The thing is, I have reason to be concerned simply because I know how I feel.  I know firsthand what this means and I know the chance of surgery just increases.

My husband’s response: “What does this even mean?  The letter doesn’t say “anything” (sh**)…

I simply walked away…

Just because it speaks volumes to me (much more than I’ve actually mentioned above), it doesn’t to him.  Now I could go on and on about why that is but it wouldn’t achieve anything.

I realised though, the Hydro community reading this, would definitely have a few people who would understand the emotions I’m filled with at this point.  Especially those who have had the same kind of struggles to be heard as I’ve had.   

Similarly, if you’re a friend, family member or colleague of someone with Hydrocephalus, then please know this:

  • I can’t emphasise enough how scary these situations are (something I articulated the next day to him – it went better than I expected). 
  • It messes with your head and shifts the focus on so many things. 
  • A letter like this might seem like a small thing but sometimes all it takes is for that simple thing to be the final nail in the coffin.  Just another thing to push you over the edge.
  • It’s a buildup of all the other times and the cherry on the Hydro cake, which causes everything else to come crashing down.
  • The way you view life changes and as much as you tell yourself not to worry, you do.  
  • As much as you will yourself to just keep living and not be affected by any of it, you are.  
  • As much as others expect you to be OK with all of it and not make a big deal out of it, you’re not able to.  
  • It’s not through a lack of trying because, you do.  
  • It’s not that you’re being negative because, you’re not.  

It’s because you know and understand the ramifications of the fork in the road because, quite simply, you’ve been here before!

You’ve HAD to know because that’s the way you’ve survived all along. 

For now, life carries on and I’ve managed to put it out of my mind (sort of).  Either way, when my appointment comes, I’m prepared (kind of) …

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!

9 Comments

  • Bethany Bacon

    August 19, 2019 at 4:51 pm Reply

    Thank you for sharing your heart on this. I too have Hydrocephalus (since birth; born at 24.5 weeks, in 1983). Right now in fact, I am going through yeat another ‘waiting’ period. I completely understand the frustration. Thank you so much for writing this blog. It helps me to know I’m not alone in my frustrations. As no one in my circle of friends and family understands Hydrocephalus. And, when I try to educate them, some just don’t care to be educated. So, thank you again.

    • Skyewaters

      August 19, 2019 at 8:39 pm Reply

      You’re welcome Bethany!
      I fully understand, that in itself can be a challenge apart from having this condition.
      Thoughts and prayers are with you while you “wait”.💙

  • Ron Kelleher (Hydropioneer)

    August 18, 2019 at 11:30 am Reply

    I fully understand you Celeste but worrying about it only gets you stressed. I will us the line I send to everyone I come upon. Worry is like a rocking chair. You can rock as long as you want but in the end you still be in the place. Weather you worry about it or not the results will be the same. Please let me know how your appoint goes. As for your husband or any only else who has not been on our journey they have no idea. 🙂 Keep you chin up ! 🙂

    • Skyewaters

      August 18, 2019 at 11:50 am Reply

      Thanks Ron.
      Strangely enough, while I was writing this post, I remembered your line😊
      Update on my appointment to follow in due course💙

  • Patricia Mastromonico

    August 17, 2019 at 11:14 pm Reply

    My Ex-Husband has eye problems he was born w/Hydrocephalus due to my mother in law not having prenatal care for her whole pregnancy. So his Hydrocephalus wasn’t Congenital but he does have a serious vision problem. He used to wear contact lenses & after he removed them he wore eyeglasses. But after almost 24 surgeries for revisions & shunt blockages, his vision is a lot worse. He was born December 2,1960. He is now 58yrs old.

    • Skyewaters

      August 18, 2019 at 2:45 am Reply

      Thank you for sharing Patricia💙

  • Kate

    August 17, 2019 at 8:47 pm Reply

    You’ve articulated my exact feelings so well. My 14 year old daughter has congenital hydrocephalus. My husband has a very similar reaction to yours. Perhaps the reaction is a gender thing?

    • Skyewaters

      August 18, 2019 at 2:44 am Reply

      I’m not entirely sure, might be. I just know it drives me nuts, most days.
      I hope your daughter is doing well 💙

  • Geffrey Prior

    August 17, 2019 at 7:09 pm Reply

    I just have NPH (Normal Pressure Hydrocephalus) shunted 12/13/2015

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