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Back to Jayenkai's Blog ( Created 13 September 2013 | Last Edited 13 September 2013)
Bad Vibes : Buggered for Life
So, yesterday I went for my regular 6 month checkup.
Dr Leggate's disappeared on a holiday, or a fundraiser, or having a brew or something, so instead I got to see Nicola, who was one of the main neurologists whilst I was in.

Sat with her for about 20 minutes or so, and she asked how I was.
She said that, since the last time she'd seen me over a year ago, I was looking decidedly better, and much less of a misrable bugger! Her and the team were starting to worry that I might be losing it, as day after day they saw me, still stuck in the ward, getting more and more depressed!!
Luckily, I've had a year of NOT being stuck in a sodding hospital ward, and have generally managed to perk up a bit

She also seemed impressed that I'd managed to put my weight back on, and we discussed my curious new tastebuds, and how it'd taken me a long while to get used to everything tasting different.
I still enjoy all the food that I eat, it just all tastes different! Hard to explain..
The only food I'm now avoiding is onions. Any cooked onions in a dish, and I'm completely off it.
But other than that, I'm mostly ok with foodstuffs, and although it's a case of "will I like this, anymore!?" it's mostly been a bunch of yesses!

So, she ordered another MRI scan, to check everything's flowing correctly in my head, and then we talked about my terrible balance.


Apparently, they were hoping it'd return, but after such a long time, it doesn't look like that's going to happen.
So, pretty much fucked for life, there, and will have to learn to live with it, as opposed to expecting it to get better.
God damnit...

To be fair, though, I'm kinda glad she said that.
I now know that this isn't a terrible complication which might result in me going back in.
This isn't "normal", but it isn't entirely abnormal, either.
It's just one of many possible side-effects, and it's not going to suddenly cause any extra issues.

As long as they keep an eye on the Shunt, and keep doing occasional scans, I should be just fine.

I'm getting better.

I just might not get any better!!

Latest Comments

Posted : Friday, 20 September 2013, 02:31

Missed this before, but at least you now know that you'll have to live with it rather than hoping things will improve.

On the bright side though, you're not getting any worse

Posted : Friday, 20 September 2013, 03:56

Yeah, it's a case of "as good as it gets", and learning to deal with it, as opposed to the constant worry of "why am I not getting better?! Could there be something worse going on??!"

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Posted : Sunday, 29 September 2013, 08:00

Just had an odd thought because lots of people I know are all pregnant and wondering what's safe to take...

Have you tried ginger for the nausea? People take it for pregnancy morning sickness. You can either get it as a tea or make hot squash out of lemon, honey and fresh ginger. It's great when you've got flu as well.

Posted : Sunday, 29 September 2013, 09:19

The nausea's mostly minimal now, and it's nearly all bad balance. I think it's a case of my head getting used to the bad balance, which was the reason for all the previous nausea. Now it's just a case of learning to deal with the bad balance, and ... Hopefully all should be well.
Taking time to get there, and apparently may never be back to normal, but I'm certainly having more frequent short walks around the street, now, and am moving around a little more.

Slow, and depressingly shit being stuck in the house.. But... Hey, I'm still in one piece!!

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Posted : Wednesday, 23 October 2013, 11:44

Hate to wheel back, but what was the official diagnosis, J? I missed that part.

As long as you're still in one piece and managing. Sadly, sometimes being in the shit for so long, it's hard to measure getting better.

I've had a few health issues myself, so follow all that crap everyone always says about chin up, forward attitude, blah blah, even though i'm sure it's no condolence at this time

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Posted : Wednesday, 23 October 2013, 14:33

I can't remember the exact name for what it was. Really need to jot that down, but basically it was an odd growth between my spinal column and your brain, which for reasons unknown caused a whole lot of fluid to build up in the area.
Most of the growth has been removed, but not all. The growth isn't cancerous, nor deadly, so on it's own isn't an issue. The issue is all the fluid building up in my brain..
To battle the fluid, a "shunt" has been inserted, which is basically a little thin tube with a little magical doohickey at the top, which runs from my neck, up past my ear, the down through my body to my stomach. If there's too much fluid, it simply drains it into my gut. Quite what my gut then does with it, is beyond me, but it's safer than having it build up in my brain!!

'Tis an odd thing to have. Most of the time you forget you now have an artificial tube running in your body!! Then occasionally you notice it..
Sometimes, I get a strong stitch in my gut for no reason. I think maybe I'm twisting in an odd way, and pulling it, or something. Not sure! But apparently a "shunt stitch" is a fairly common event..
Other times, when it's draining loads of fluid in the morning, you can feel it trickling away. Quite an odd sensation, I can tell you!!

As far as the docs are concerned, the problems are dealt with, and I'm fit no fine. The balance issues are simply a side effect of having all these ops. They're not sure why it is that I'm having such bad balance issues, but it's not unheard of, and at least it's nothing serious, like an actual mental health issue.
Kinda fucked up, but.. Yeah, I sort of agree.
After what I've been through, I might not have gotten out scot free, but at least it's not any worse.

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