Serious hearing loss in adults...any experience?

[kokeshi]

I've just been up at A&E today...I am almost totally deaf and pretty desperate. I first noticed my hearing was dull about 3 months ago which co-incided with a head cold. I was prescribed gentamycin ear drops and an antibiotic. The cold cleared but my hearing didn't improve.
About 3 weeks later my hearing went totally in my right ear, but the left one was still ok. I've been back 3 times since, (3 different docs) and have had an array of nasal and ear sprays and another course of antibiotics. Each time the GPs looked in my ears and said there was a blockage...like glue ear in children. I was referred to ENT 5 weeks ago and have an appointment in December (way too long).
So, 2 days ago, the hearing in my left ear deteriorated so much that I can hear almost nothing at all. It's really distressing and it affects everything. The intern there told me today that glue ear wouldn't cause such profound hearing loss and I have to go back on Monday for a test.
Does anyone have any experience of what this might be? I had been grasping on to the possibility it could be fixed relatively easily if it was glue ear but now I'm frantic that it's more serious and/or permanent.
Thanks for reading this far, any help will be gratefully received.

Morning,

Christina, I really don't know what kind of ear mould I have. It's soft and rubbery, transparent but quite thick. If I push it in to the ear, the scalloped bit at the other end isn't flush with my ear.

I actually know very little about my hearing aid. They haven't told me about the T position, if I have one, or what it does. I would have benefited from it last night at the lipreading class as they had a loop system. As it was, I had to remove my hearing aid as the whistling was bothering the others and I got embarrassed.

That's amazing about your experience in Cyprus. I think that although I've lost my hearing, I've also gained a lot in the past 4 weeks. Meeting other deafened people and communicating with you and all the others has really opened up my world.

For that I thank you.

Hi jenwa,

I totally empathise with your situation. I was just bundled out the door after being told that I was profoundly deaf, it was permanent, and they couldn't explain why. I'll never forget that moment and how I felt.

I see what you mean about in-the-ear H.A. That was what I had hoped for first (I had absolutely no knowledge) but I'm not sure how the NHS decides who gets what. I know they had to give me something as I'm pretty extreme.

I have been told that if you are deaf or hard of hearing you can go through access to work who may provide you with what you need.
Here
Maybe you're not ready to go ahead with that yet, it's acary I know but other's have passed it on to me so I'll do the same!

I don't get a lot of sound from my Hearing Aid (just te one at the mo, right ear is very bad), just strange metallic vibrations which were horrendous at first but I'm getting used to it now. It does help a bit with environmental noises (traffic, doors closing) and the rhythm of speech helps slightly to lipread. You will probably get more benefit than me though.

kx

Thanks krisskringlekokeshi

I was given the number by my audio dept (never knew about website) but have been to scared to ring as not really sure what to say so the site was helpful to read and see what its all about. Tried calling drs but nothing til jan so wont get to see consultant for 2nd opinion for afew months!
Husband says I should try private referral but cant see them diagnosing any different, they will just proberly shake my hand and smile more!
Thanks for advice though, will read more in to the website tonight.

Hi all

My December copy of the RNID magazine (called one in seven) has just arrived and there's a very nice supplement with lots of info for anyone new to deafness. Get your copy now!

By the way, I had an in-the-ear aid in my good ear for a short while until my hearing got too bad, and it wasn't all that comfortable. I actually prefer behind-the-ear aids. I thought they were very visible but you'd be amazed how many people just don't notice a hearing aid until it's pointed out to them!

Hi all...

jenwa, I took myself to A&E and got to see their ENT consultant within a week (my GP referral was for 10 weeks time). My hearing was deteriorating quickly and I've been told since that hearing loss in young people (I'm 30 too) should be treated as an ENT emergency.

welliemum, do you have to be a member of RNID to get it? Is it expensive? The lady who writes the Agony Aunt column was the one I met for dinner on Sunday, and she was at our lipreading class last night to give a talk. She's very nice.

I think I'd like to get my hands on a copy of that.

kx

If the feedback you are getting is due to poor fitting moulds you can try putting some vaseline on them to create a better seal.

oh wow...even an audiologist in mumsnet. I never cease to be amazed! I have a unitron 6HP model. It has a little tiny grey push in button between the microphone and the bit they stick the leads in. Is that it? If so, would it make a difference?

geogteach, thanks for that advice...I texted today and they said to come up to the repair centre between 9.30 and 12.30 tomorrow. I also asked her about skeleton moulds but she said the are sometimes too loose? Would that be right?

Thanks for your tips

on mumsnet...Unitron Unison 6HP.

Great advice thanks. It's always good to know things before you go to audiology as I've found they're not so good at explaining. Or maybe they don't have the time to spend communicating with me!

I'll mention a bite-block, I think they may take more impressions tomorrow. It depends if they think it's actually loose I suppose. If not, I'll give the vaseline a go!

Cheers x

Hello,
Thanks for all the info, I've now got a temporary mould that they made right there for me, and took new impressions of both ears.

I mentioned the bite-block as well...lo and behold she brought them out! She is very nice, (the audiologist) and was apologetic about the mould, so it's not whistling now (it does feel tighter).

The new ear-moulds should be ready for my second hearing aid fitting on the 18th. I've been invited to my partner's family's homes before christmas and new year and I'm obviously a little apprensive about the situation.

Any tips for explaining about deafness to 7 and 5 year old girls? They're lovely inquisitive kids but I'd like to be ready for all eventualities. We visited them in Houston, Texas in March, when I had perfect hearing so it may be hard for them to understand. I'm not so comforatble with it myself yet and I don't want them to feel bad.

kx

I would think that 7 and 5 year old girls would probably be more accepting and matter-of-fact about it than most adults, kokeshi. I think just explaining to them that your ears have stopped working so well and that you'll need them to face you when they talk would be enough.
btw saying in Mumsnet as opposed to on Mumsnet means you're being reeled in! You will soon stop living in the real world and will spend your days talking to people with weird names..........

lol chipmonkey...I'm halfway there already! Thanks for the name BTW.

They are lovely girls and really smart, I think it's just the "Wh" questions (what, why, when, where etc) that I'm worrying about. It will be good practice for me though, kids don't allow you to be vague.

I've only had to deal with a toddler, which has been very little problem. He doesn't realise I can't hear and our relationship is exactly the same. It makes no difference to him whether I can hear or not. That has really helped me stay grounded actually.

I think their mother has already told them and I know they are asking if they'll get to see me, so that's a good sign already.

How are you doing, Kokeshi?

My son's cochlear op date has been set for 31st January. They'll be doing the right ear. They told us not to expect a huge improvement; as he already does so well on hearing aids the difference may not seem that big. He needs to be off school and everything else for a week or two before the op to make sure he doesn't get any infection which would postpone the surgery. Whatever will he do? Aged 7, sat at home watching Cbeebies and playing on the PlayStation.

How are the lipreading classes going? Are you getting used to the hearing aid? Dominic used to have a Unitron. They are quite old-fashioned analogues but very powerful. He had a tough time adjusting to new digital ones (about a year), I think he preferred the blast of sound from the Unitrons to the more sophisticated sound of digitals. We had to change to digitals in the end because the hospital no longer repaired Unitrons as they were phasing out all the analogues.

Oops, kokeshi, just catching up and I realise I missed your question about the one in seven magazine.

You've probably found out already, but yes, you need to subscribe as far as I know. The sub is very reasonable (under 20 quid per year I think) considering the huge amount of info you can get from it. Definitely recommended

Kokeshi - there's a conference on "Cochlear implantation: long-term isssues - access and management" in Nottingham on Friday 20 April 2007, £125. Perhaps a bit early for you to look into this, but in case you are interested, more info at www.earfoundatuion.org.uk

I hope you're well and that the meeting with your young nieces went OK.