Hydrocephalus: What’s your timeline look like?

Hydrocephalus: What’s your timeline look like?

Why hasn’t it crossed my mind before?  Only after my visit to the Neurosurgeon on Monday, did I think to build a timeline of “episodes”.  Looking through all my blogs, I found a pattern and almost feel like I’ve been sounding like a broken record over the years.  (Apologies to anyone who discovered this little fact sooner).

As I put it all together, I heard little whispers of phrases I’ve used after each occurrence:

“I don’t know why I’m so tired…”

“I don’t know why I feel this way…”

“Maybe it’s something else and not my ETV…”

“I have a feeling my ETV is failing…”

“Maybe I need to change my diet, start eating healthier and do some exercise…”

“Maybe I’m going through early menopause…”

“Maybe I’m just stressed…”

There have been quite a few excuses I’ve given myself while trying to make sense of it all.  Especially when doctors dismissed my concerns and made me feel like I was smoking something (some days I wish I was).  The difference between all those times and now is, then I looked at isolated incidents.  Now, I’m looking at it collectively and quite frankly, I see a pattern.  If this were yours, would you ignore it or say it looks “OK”?

No. of episodes per month since 2015

Bear in mind though, between 2010 (when I had my last MRI post ETV), and August 2015, I hadn’t thought to keep track of my symptoms.  So, I can’t account for the time following my ETV to August 2015 – in hindsight, it would have been useful too.

The surgeon suggested: Maybe the pressure builds up and, with there being too much CSF to push through the ETV, I become symptomatic, until finally, it pushes through and my symptoms ease off. Seems plausible…

Does that mean we won’t die or go into a coma as literature suggests, if left untreated?  Does it mean we don’t need to act when we are symptomatic? 

Valid questions I think but, certainly not any which I’d like to experiment with.  I’d probably just count myself extremely lucky/blessed to have survived this long.

I’ve given this information to the surgeon to digest and take into account.  I hope to hear from her…  However, my analytical brain leads me to believe there’ll be one of two outcomes:

She’ll say it looks like intermittent failure and suggest surgery, which may or may not be before the next episode.  She may decide to wait until the next episode, as suggested at my consult but, ultimately end up performing surgery.

Or

She’ll say my body appears to be coping and maybe I just need to ride the wave each time (something which doesn’t leave me feeling comfortable).  

The point is, looking at the graph and reading my symptoms, I can’t see why she wouldn’t act on it.  But, I’ve experienced “stranger” care and this would not surprise me, I’ll give her the benefit of the doubt though.  Therefore..,I await her response in anticipation.  I know that she’s very busy between her consulting room and the hospital so, I’m not sure when she’ll even get around to looking at my notes. I’ll just have to wait patiently.  (For someone with zero to very little of this good stuff, it’s a hard thing to do…)

Putting this info together would have been challenging had I not had my blogs to reference back to.  (Relying on my memory would have been as good as me making a quick trip to the moon).  The symptoms alone weren’t good enough, although, they showed the repetition in what, and how I was feeling.  The dates I published my blogs aren’t the same as when I actually felt sick but they are good enough to draw a timeline.  I think if you have this, it gives a good indication of how often you’re symptomatic.  One question the surgeon asked, which led me to doing this exercise, “So how often have you experienced this?”  I said twice because right before that question, we were talking about the spinal pain.  It was the 2nd time I had spinal pain, as far as I remembered.  As it turns out, it’s been happening since October 2016!  (Memory you suck!)

For anyone going through something similar, my advice would be this, if only to stay sane: Keep a journal of your symptoms. You decide what info it contains so it makes sense to you.  A Neurologist once told me, “It’s more for your benefit than anyone else “.  The one before him, didn’t even give my notes a glance, she outright ignored it saying, “We don’t know what else to do for you”. The reason why I summarised it all this way. I made sure to give this new surgeon, just a one a page summary followed by all the dates with bullet points of what and how I was feeling. If she didn’t read all of it, at least I’d covered the most important bits in the summary.

If it works for you, use it.

Summary 

The common trend of symptoms when I have these episodes are: 

  • Headache 
  • Nausea (sometimes vomiting
  • Change in mood, becoming irritable
  • Dizziness
  • Light-headed
  • Tired and extremely sleepy.  Extended periods of sleeping days away, only getting up to use the toilet.
  • Feeling weak all over 
  • Total loss of appetite
  • Blurry vision (but not every time)
  • Struggling to focus or process information or staying confused
  • Spinal pain radiating down arms and legs, predominantly right-sided – Since October 2016
  • “Full” feeling in face – not sure if this is attributed to paranasal sinus diagnosis 

Best way to describe how I feel, like having a bad hangover – taking a few days to a week for my body to recover after the headache subsides, to feel “normal” again.  My body and brain feel battered and bruised.   

General feeling of headache: In eyes or Across top of head to back of neck or Base of skull and across the top of my head. 

DiagnosesMedications used/trialed 
Basilar Migraine? Mild paranasal sinus mucosal disease  Hyperthyroidism  Amitriptyline, 3-month trial – made me depressed and suicidal. Propranolol – not really effective, lasted only a little while. Morphine. Codeine. Ibuprofen. Tramadol. Panadol.

Self-help 

  • Massage 
  • Sinus Rinse 
  • Diet changes 

Pressure Monitoring notes – the only other surgeon who suggested a “degree of absorption difficulty”.

This was done about a month after I felt unwell so, no longer symptomatic 

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!

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