Juggling life through a bi-polar lens. Sometimes up, sometimes down. Mostly trying to tread water in the middle. Creating a likeness to a normal life. Whatever "normal" is...

Monday, 27 April 2009

And NOW I have SAND in my pants.

Had the appointment with the ENT doc last week.
Went for (1) the labrynthitis that my GP said was causing my dizziness these past 7 weeks, and-
(2) why has my hearing on my right side been reduced for years- GP thought it might just be sinuses, even though I can breathe fine. I can't pinch my nose, blow and make my ears "pop". They just won't clear. And on the right side it really affects my hearing.


Imagine my shock when, after 90 minutes in the clinic (plus 75 mins in waiting rooms) I discover that I actually have a disease called Otosclerosis, which causes progressive hearing loss.

Otosclerosis- you know those three tiny bones in the ear, and one of them is called the stapes or "stirrup"? They vibrate and this sends soundwaves through to your inner ear-???
Well in this condition they harden till they just stick fast and don't move, hence the deafness.

AND!!! As though this wasn't enough!
- this describes the first stage,
The SECOND stage is when the disease goes into the INNER ear, in which case it actually interferes with the nerves, and how the sound messages are sent along to the brain.

The test for this is with a tuning fork- he made the fork vibrate then held it in front of me and asked WHERE I heard it- to my surprise it sounded like it came from over on the right of me. He carried on putting it in different positions and asking me where I heard it. It was so weird, but I heard it from other directions most of the time, not from where it actually was. (No wonder I can never tell where helicopters are!!!)
The worst one was when he actually touched my head behind my left ear with the fork, and I heard it over on the front right.
So! I was positive on this test, meaning the disease has already got to my inner ear.

Then I had a hearing test-
VERY pleased that my left ear comes up as within normal range. But VERY shocked my results of my right ear- I knew that it was mostly low sounds I can't hear too well as I have noticed this with music; no bass in the right ear, always tinny. But in the test some low noises I couldn't hear on the right till they were at 40 decibels.

The tester also did another test for the spatial hearing. She produced a chart that showed a particular pattern that the ENT doc said confirmed otosclerosis in the second stage. I've since googled it till the cows come home and have at times found examples of this chart with just the same pattern on it. On a positive note I am really pleased to have found a doc that knows his stuff!

SO now I have an appointment in May for a hearing aid fitting! And then another appointment with the ENT doc re the dizziness-

Oh yes! The dizziness! It wasn't labrynthitis at all! SO just as well I got the referral to the ENT as the GP was wrong on that. Wish I hadn't taken all the stuff he gave me for it then, hurrumpff hurrumpff....

The dizziness was something called BENIGN PAROXYSMAL POSITIONAL VERTIGO. This is what it is-

you know that bit in the ear that coils round like a snail's shell? (Cochlea?) Well! A tiny bit of calcified matter had broken off and was floating about in the liquid in this bit. So! The ENT did a procedure called The Epley manoeuvre which means he lay me down till I went dizzy, holding my head in his hands. Then he turned my head right, back, up, down, left etc etc, steering the little bit of matter out of the coil. And it worked! The dizziness has gone! Amazing! Wonderful to see someone who knew what to do!

Mum has very little hearing in one ear and her dad was the same, and yes, otosclerosis is genetic. I've emailed my siblings to let them know....

You can have the gene and not develop the disease, and different things can spark it off. One thing that can is having a virus. This fits, as I can trace my hearing loss back to the late 1980s when i had a bad head cold that made my ears blocked and itchy. My GP back then didn't give me anti-biotics, so maybe that was because he thought it was part of the cold virus and not an ear infection. But since then my right ear has never felt 'open'.

The ENT said my ears were clean, nothing to block them and ear drums are normal. SO it isn't a pressure thing. He doesn't think my Eustachian tubes are working well though, so he's going to test them when I go back.

This last week I have been in shock and upset at the news, and trying to imagine losing my hearing. Mum has been sympathetic and supportive. We have had a laugh about it- with her it is on the left and with me it's on the right. SO I said, we better make sure you always sit on my left in future or we'll both be sitting there going "Ay? What? What you say?"

I just didn't need this news on top of other stuff, which have been stressful too. I have been on the floor with big belly-sobs, so low and upset. I feel like I am disintegrating inside lately. I wish I could go somewhere on my own for a bit and just rest and watch the world go by. I really need to get away on my own and clear my head. Which is odd, really, as I feel so lonely.


freebird said...

Hi Helena. You've added this post between me visiting here and going to read your interview.

Doesn't bad news seem to come in bunches? My niece is having big trouble with vertigo and they say she has Meniere's disease. What they were giving her for it was hurting her damaged heart so now they have to rethink what to do. I am glad your doctor found what you really have and was able to take care of the dizziness so easily. One problem solved!

Your last lines saying you wish you could go away and be alone but it's odd because you are lonely actually makes a bit of sense to me. I'd say you are looking for a spot of peace where you can digest all that is going on without more piling on. Feeling lonely comes on because even if others know about your troubles you are still the one who has to deal with them and it seems to separate you from the rest of us. Thank goodness all of that gradually passes and you'll come through and feel better - at least I hope so. Pet your kitties - animals are always so accepting of us even when we are unhappy.

Emily said...

Hi Helena,
It has really been a mixed-bag of news for you, hasn't it. Finally you have found out what has really been going on and, by the looks of it, finally someone who knows what they're doing. But, on the other hand, difficult news to come to terms with. It's terrific that you have the support of your Mum, though. I know there's a lot I couldn't have got through without mine. And I know exactly what you mean by needing some time out to be on your own, just to rest and reflect. I have had that feeling a lot myself lately with ongoing health issues which just never seem to get any better. I am thinking of you, over here in wintry Australia, and I can only say to you what I say to myself every day - one day at a time.
Hugs, Emily x

mrsnesbitt said...

Hi Honeybunch,
Fully understand how you feel re getting away from things for a while. Sounds so difficult to organise but why not start with a small step...I listen to Radio 4 when I want a bit of space, the afternoon play at 2.15 is a godsend, as are the Archers. It takes me to a place on my own, as does Classic FM, I know it's not what you need wholy, but it's achieveable today.

Julie said...

My dear Helena I was so shocked to read your news to start with but so glad too that you've finally found doctors who know what they're talking about and can help you. It's fantastic that the doctor knew what to do for the dizziness, how amazing! But even that takes some thinking about and coming to terms with, doesn't it? I think Freebird, Emily and Denise are right and I hope their words will help you get through this. Do exactly what you feel you need to do and don't put any pressure on yourself, just try and 'be' and do whatever feeds your spirit, or do nothing if that helps too. Tell Dilly and Bob they have to be special carfterers. Enjoy your garden for a while and keep an eye on the baby birds if you have some this year. Sending you lots of love and hugs xxxxx

Angel said...

This is a good news bad news Happy feeling! Glad they fixed the dizziness, and sorry you are losing your hearing. A lot of us are loosing hearing but that is caused by age or is selective hearing! Try to look at this as an UP beat thing. They know know what is wrong and can start helping it. If some things start getting better There is lots of hope others will follow.

CherryPie said...

I am sorry about your hearing, it seems like you are in good care now though.

I can totally relate to that last paragraph, I often feel like that.

Helena said...


Thank you so much for your messages :)
I hope your niece is ok, I was reading about Meniere's when I was trying to figure out what my dizziness was. Your last paragraph makes a lot of sense to me. And though I am back home now I had lots of snuggle therapy with my kitties at mum's :) I love them so much!

Helena said...

Emily, I keep forgetting that it is winter over there now! We have had just had a nice couple of weeks and I hope that wasn't all we're going to get for our summer.
Thank you for your message- i hope your own health probs improve too. Yes, it is great to have a good doc at last, who knows what it is and what to do.

Helena said...

Mrs Nesbitt,
oh wise keeper of the goose!
I love Radio 4
This isn't a sign of age as I've listened to it since my 20s :)
One day at a time...

Helena said...

Julie, I've been up nights watching hedgehogs or going out and standing in the garden, mid dawn chorus. It really lifts me.

Unfortunately more lately I've hit the bottle, which doesn't help in so many ways!

Helena said...

Selective hearing LOL I hadn't thought of that- I can do that with a good excuse now can't I? :)
Thank you for all your lovely comments.

Helena said...


It always helps to know it isn't just me -thanks :)

Lynda (Granny K) said...

Hi Helena, Glad they sorted out the dizziness. DH has Meniere's Disease and is also deaf in one ear. My hearing is not as sharp as it used to be,(I'm not very good on the switchboard at work!) so it makes for some very interesting conversations! But hey, you gotta larf!
Hope you're feeling better soon.
Big hugs from Lynda

Emily said...

Yes, we are well and truly getting wintry here now. Getting dark by 5 p.m. and the winter woolies are out of the cupboard... Hope you get some nice weather at your end. Thinking of you :)

1st Mate said...

Helena - You have tracked down the source of a problem and while it was news you'd rather not have heard, now you can take steps to deal with it.Look how far you've come already, you started out "in shock and upset" and now you're able to talk about it, even laugh about it. If you're craving "going somewhere off on my own" it doesn't have to be packing up for a trip, maybe just a lovely walk somewhere you've never been.

Debbie said...

Oh dear Helena, so sorry to hear you bad news...My granfather was deaf in one ear and really used to play on it!...especially when my grandmother was nagging him to do something...he used to turn his hearing aid off! lol
On the bright side at least you have been cured of that awful dizziness which means you can get out and about more now the weather has brightend up.
Try to stay positive hun. {{Hugs}} Debbie x