Hydrocephalus : When diagnostic tests show everything as “normal”…

Hydrocephalus : When diagnostic tests show everything as “normal”…

“Normal” . What the hell does that mean anyway..?

Do you ever just get a tad cheesed off by results which show “normal”? 

When you feel all the discomfort which spurs you on to seek medical help, yet test results show “nothing is wrong“.  I think it’s a very fine line between knowing your condition well enough, the signs and symptoms to look out for and when to seek help or question if there’s something more going on with your body.  One of the major questions, which undoubtedly arises with a condition like Hydrocephalus is, whether your shunt or ETV is failing.  Second to that, whether or not you are over or under draining (This is more Shunt specific.  For ETVs, it would probably be a case of, is the stoma (hole in the 3rd ventricle, sometimes 4th), closing or big enough for the amount of CSF your brain is producing?).

That aside…

I, for example, having an ETV and NOT a shunt, know that I need an MRI with Cine flow study to determine if there’s flow through, and patency of the stoma.  It’s useful to know what to ask for, as not all GPs or ED doctors know what diagnostic test, will best show any signs of pressure build up in your head.  Furthermore, CT scans are more commonly used when visiting the emergency department at the hospital.

A few weeks ago, I wrote about how sick I had been feeling.  I decided, I’m tired of changing between GPs so, I’m sticking to one.  You see, when I don’t get my satisfaction from one or, I don’t feel listened to or, that I’m getting the best care…I change. 

Some may say this is where things go wrong for me – that’s their opinion but maybe…just maybe, they have a point.

Regardless, with all the crappy care I’ve received over the last 6 years, my opinion on the matter is – never settle if you aren’t happy with the medical care you’re receiving.  Having moved countries (again), I was a bit nervous about starting over but, thus far, my new GP has pleasantly surprised me with his thorough investigations to determine the root cause of my “issues”.

I’m medically complicated so, I take my hat off to any doctor who dares venture down the rabbit hole with me.

Also, I believe in seeing a Neurosurgeon for regular checkups.  Simply seeking help, only when I feel unwell, makes me feel uncomfortable.  This was the attitude the previous specialists had towards my condition and, I bounced between quite a few of them, feeling unsafe to my core.

We take our cars to the mechanic for regular checkups to make sure they’ll continue to serve us well.  Our pets go to the Vet for exactly the same reason.  So, why not have the same attitude towards our body, especially while living with this unpredictable, invisible condition?

In my opinion, follow-up/check-ups, could be anywhere between every 6 months, a year or even every 2 years – unless you’re symptomatic.  I don’t think there’s a definitive timeline or, as the saying goes, it’s “not cast in stone”. Also, not everyone with Hydrocephalus will share this point of view – to each their own.

I’ve been given a recommendation of who to see but, I can’t see her until I have an MRI done first.  (I’ve decided to switch to a female surgeon because all the males I’ve dealt with thus far, have been complete ****heads – the way I see it, I’ve got nothing to lose. Also, without even consulting with her, I’m already impressed by her approach). Hopefully she can shed some light on the “weird feeling” I’ve felt at my ETV site, for a while now, as well. As “luck” would have it, the same time I was booked for this scan, was the same time I started feeling unwell

Long story short…the MRI showed everything as “normal”. This annoyed me slightly because it meant that whatever I was feeling a few weeks back would probably be brushed aside like all the other times. I felt a de ja vu moment coming on and had the internal dialogue of whether or not I should just let it go…

But, as it turns out, the new Neurosurgeon wants me to have a Cervical MRI Scan done as well. No other Neurosurgeon has requested this before. It turns out, this scan was requested because I had right-sided numbness something, which was ignored explicitly before. As part of trying to establish the cause of my symptoms a few weeks back, I’ve had blood tests, a thyroid ultrasound, fine needle aspiration (The nodules previously discovered in my neck have grown but, thankfully it’s not Cancer. It may mean surgery to remove but that’s a bridge I’ll cross when I get there – yes, another scare of note), CT scans of my neck, chest and abdomen and a mammogram. The CT revealed a C5/C6 Spinal degeneration, very possibly the reason for the numbness. We suspect the Cervical MRI Scan, will give a better indication of the problem. Whether the result of this will show “normal” or not, it gives me some hope that I’m not going to be dealing with a complete Muppet going forward.

Normal“, a word you’d think any person would prefer to hear or see on their test results.  But, when you feel sick and can’t explain what’s causing it, then it starts becoming frustrating and even leads to borderline anger.  You question everything, doubt yourself and sway to and fro between what your next move should be.

So, do you go with your gut and push to be heard or, do you accept the “normal” result which, is theory knowledge to doctors, while your body is showing the practical part of the havoc being unleashed? 

Have you ever had a “normal” result only to find out there was something else lurking in the background..?

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!

2 Comments

  • Philip Mastromonico

    April 7, 2019 at 2:54 pm Reply

    Skye, my ventricles haven’t responded to increased ICP for decades. NSG’s inevitably wait when I lose consciousness to see changes despite me being out. My last episode required 9 shunt surgeries in the span of 2 months before they got it right. Sadly, we can never know/

    • Skyewaters

      April 8, 2019 at 2:52 am Reply

      As terrible as it is to read what you’ve written, I know it’s the reality of what so many of us face. Having to be comatose or hanging by a thread before we are given a second thought. Sad state of affairs…

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