I saw my brain. Eyeballs are weird.

I had my follow up appointment yesterday and I’m pleased to say… No change! I’ll remain on ‘watch and wait’ (ominous sounding title if you ask me, but perhaps better than the parental ‘wait and see’) until my next appointment in ONE YEAR’S TIME! Whoop 🙂

The appointment armed me with a few more facts. For one, I got to see my brain. So it’s definitely there. Which was good to see after the hearing test I had just had. The woman had to say at least three times, “No dear, you only press the button when you hear an actual noise,” which was a little embarrassing.
Anyway, brains are pretty cool it turns out, especially the eyeballs.

We scrolled through the different portions of brain until we got to the hearing system, where the consultant showed me the cochlear (very cool spiral, well done brain) and the hearing nerve on my right side. All tickety-boo.

Then we compared it to the left side, where Pinky and I laid eyes on each other for the first time. He (/she?) is a 3mm blob near the cochlear, with a slight thickening of the hearing nerve to which it is attached. At the moment, it’s not doing a great deal apart from giving me a little tinnitus and reducing the quality of my hearing – happily my hearing is still just in the ‘normal range’, but likely to decrease as time goes on.
The most positive part of all this is that acoustic neuromas grow very, very slowly, hence the annual MRIs and check ups; however, if and when it does grow, it could block the blood supply to the cochlear, on which case the little spiral would not receive any oxygen and I would lose hearing on that side altogether. Now, I say this next bit for anyone reading this who has ALSO been diagnosed with an acoustic neuroma (bad luck ol’ fellow): if this happens to you, get on the phone to your consultant über-quickly and ask for a course of Prednisolone. This is a strong steroid that, I believe, acts as an anti-inflammatory and is perhaps the one chance at regaining your hearing. It is imperative that you start the course within 48 hours of losing the hearing.
The only reason that I had heard of this was through a post on the BANA UKwebsite, so thought I’d ask the consultant. It was perhaps a little surprising that they don’t just tell you this important fact, but perhaps they assume that you will be contacting them in a panic anyway if you were to suddenly wake up half deaf.

So, in summary, I’m pretty happy about the small size of the neuroma and the fact that there will be no cutting open of my skull in the near future. My consultant, Professor Saeed, is really lovely and helpful and certainly knows his stuff. All in all, a successful day.



Long time, no blog

I haven’t had much to say on here recently, as my post-MRI review is not until the 20th December. I think that is good news, and am assuming that they would have asked me to come in earlier if there were any major changes.

My tinnitus appears to be vaguely the same as it always has been, so I don;t have too many concerns there.  I’ve even been to a club (shock horror!) twice in the last month, and although my ear felt pretty horrible when I got home, it certainly hasn’t had any lasting effects. I know, I know, I probably should be avoiding loud 80s music, but I only go once in a blue moon.

Unhappily, I have also discovered that alcohol makes my tinnitus temporary worse! VERY much hoping that the consultant does not ban me from wine and dancing….


Well, enough about all that. Christmas is coming! Cannot WAIT 🙂 I love Christmas – it has always been a really big deal in my family, particularly as it is also my brother’s birthday. He has his birthday in the morning, whilst we kill ourselves trying not to open our Christmas presents, then we all celebrate Christmas after lunch.  Recently, I have been cooking most of the dinner – I don’t do a lot of cooking at home, but really enjoy the task of turkey with all the trimmings (e.g. bread sauce with extra bread sauce).

The other great thing about Christmas is being able to go home and celebrate with the family. Since my middle brother and I have moved away and set up homes ourselves, it is not often that we get to sit around a table together.

You may find it interesting to hear that none of my family know that I have an acoustic neuroma. I am not necessarily hiding it from them, but I remember how horrified I was when I first googled it, and have decided that it would perhaps be better for them to learn about it if/when I ever have to have something done about it.  It shouldn’t be something that scares them, but as soon as you hear ‘brain tumour’ you automatically imagine something bad. It will be important to explain that I have a sort of fake brain tumour named Pinky that is trying to con its way into existence… That pesky Pinky.

Well, dear readers, that’s a wrap, for now.

Win, lose or draw

Remember that tv programme that used to be on in the mornings, “Win, Lose or Draw”? Celebrities used to sit on a sofa and play Pictionary on a big flipboard, but the audience couldn’t even have a guess because the answer always popped up on the bottom of the screen. It reminded me of my little brother always desperate for me to watch him play computer games.
Anyway, just before the adverts, the presenter always did a “special” drawing for everyone to guess. He was left-handed so had to do a nifty little spin to get over to the other side of the board. This nifty move always got him great applause.
Well I have developed my own nifty little spin. You see, the AN means that I can’t hear as well in my left ear, but it’s particularly bad if I’m chatting whilst walking next to a busy road, as the background noise plays havoc on my poor 8th cranial nerve. The other person is loud enough, but somehow the words become garbled before they reach my brain and it can be tiring to discern what they are saying. This is most embarrassing if I’ve been nodding and making ‘hmmm-ing’ noises when they have actually been asking me a question.
It’s the same when I use the phone. I always thought that everyone must have a dominant ‘phone ear’ and was incredulous when I saw characters in movies switching ear willy-nilly. For me, using the phone with my left ear is like having a handy Klingon translation device – they might as well be speaking in a different language for all that I can make out.

So back to “Win, Lose or Draw”. As I said, I too have my own nifty little spin that I use when walking along, to make sure that whoever I am with is speaking into my right ear. So far I get more funny looks than actual applause – but it is a definite improvement on my owl impression.  Human necks just don’t swivel around that far… and there is a far greater risk of walking into lamp posts.


Ring a ling

Having a bit of tinnitus trouble today. I have to be careful talking about such things – the last time that I complained that my tinnitus had got worse, my loving boyfriend pointed out that what I could actually hear was the fridge buzzing…
Really now, not my fault that my brain makes the same noise! 🙂

So anyway, my headphones are replacing the buzzing with The Killers (some might suggest no difference) as I make my way to a pal’s house on the train.

I have to say, I’m pretty lucky that tinnitus is really my only symptom at the moment, and it’s not even that annoying – more of a quiet buzzing that occasionally changes in volume.

Sometimes I get a bit of a squelching noise, which is more… interesting to listen to, but happily only happens once every few weeks.

There does seem to be a correlation with stress levels. A tough day at work coupled with a noisy room can result in a really irritating squeal. But with my job, I would quite like to make that squeal myself sometimes!

In other news… My Comparethemeerkat Meerkat arrived today. Happy days!! (Perhaps the squeaking is him.)


MRI all done and it was fine. Not sure when I’ll be finding out the results.

Before you get into the scanning machine, you have to remove anything that is made from metal, as it is essentially a huge magnet. Therefore, here are my two important things to remember for the future:

1. Do not wear the wrap-around dress that becomes indecent when you remove the carefully positioned safety pins.

2. Do not forget about your underwired bra unless you want to spend the whole process wondering what the mysterious tugging sensation is in your chest area. 15 minutes is a long time in which you can make up all sorts of terrible prognoses to explain the weird feeling, only to realise that you are fully diagnosed as…. an idiot.


Waiting, waiting, tra la laa.

Today has started well.

I arrived for my MRI only to be met by a foreign man who kept trying to tell me in irritated tones that I was here for an endoscopy.
Now, I’m still not entirely sure what an endoscopy actually is but I’m pretty certain that it involves a camera on a cable that goes somewhere fairly unpleasant.

So there I am, tapping my piece of paper that clearly says MR I. (I think that the space between the letters was put there to convince me that an enigmatic doctor named Mr I would be performing my … well… endoscopy.)

Anyhoo. Waiting in the ‘waiting room/corridor’ now. I feel quite important – they’ve just given me a wrist tag doo-dah! Never had one of THOSE before! They’ve cleverly manage to misspell both my first name and surname.

Oh Lordy!! Maybe this OTHER girl with a slight variation on my name is due for an endoscopy!!!

The other thing that makes me feel a little on edge is the hospital posters. Really. Who designs these things? I suspect it is the same person who has been designing them for the past forty years. My fave is the “Abuse of staff will not be tolerated” next to the “waiting time indicator: 60 minutes or more” poster.
I am also enjoying the photo of the dodgy old lady carrying a basket of baked goods, with a tag line suggesting that she is harbouring diarrhoea underneath those bread rolls.

Agh! Here I go, just been called in!


Hello there!

Well then, this is my very first blog post! Hello!

A few months ago I was diagnosed with an irritating little thing called an acoustic neuroma. It’s a teeny tiny benign tumour on my 8th cranial nerve (acoustic nerve to you and me) made up of Schwann cells…. Yep, I don’t really know what that means either… But nonetheless, it’s here to stay for the time being.

So far it hasn’t really caused me too many problems – a bit of tinnitus and some crazy balance issues when I get a cold – kind of like getting drunk for free, but only feeling the negative aspects. It’s also very small, but I’m pretty young to have grown one.

This means that it will almost certainly get bigger, and start pressing on my ear canal, and maybe my facial nerve. AT the moment I have excellent hearing, though I say so myself, but the consultant kindly told me to “enjoy it while it lasts”. Ah optimism. Well, luckily I’ve got plenty of optimism for the two of us…. three of us if you count the little blighter, which incidentally is called Pinky as of today – it made a good blog title anyway!

On Thursday I have my 2nd MRI scan to see how ‘lil Pinky is getting along. I know that some people find the process of an MRI a bit scary, bit I kinda like curling up in small spaces – its just the noises that are a bit disconcerting. I loved, on my first MRI, how they decided to play Classical FM through the headphones as a ‘soothing distraction’. Friends, I can’t hear much when there is background noise at the best of times, but this turned it into something from a Francis Ford Coppola movie with the bangs and squeaks and random outbursts of Chopin!

I think that this time I’ll sing in my head. I wonder what that will do to the brain images?

Well, there we are. First blog post written. Hopefully I won’t forget all about this endeavour… and I’ll remember to let you know how that MRI goes! Clunk clunk.