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Profound deafness in one ear since young, but now good ear deteriorating with age - any tips/advice for hearing aids etc?

28 replies

WaitingForSummerAgain · 01/06/2020 21:54

Hi

I am deaf in one ear completely after measles/mumps when I was a toddler. The good ear was always ok, but now in my mid 40's I am starting to notice that I am struggling with the good ear more- mumbly tv, really struggling with conversations when there is back ground noise etc.

I have tried a few online hearing tests and the say mild or mild to moderate for the good one now- all sounds types in this range rather than just high/low frequencies etc.

I am trying to arrange an audiologist appointment but was wondering if anyone had similar and could offer any advice? I wanted to be a bit more clued up before I go :(

Specsavers are ringing me for a telephone consult later in the week, but only do 2 hearing aids to buy, and I only need 1 as the bad ear is not fixable. They do work with the NHS though.

I have also been looking at a local independent hearing clinic who I don't think do NHS but might sell them as a single rather than pairs?

Has anyone had similar issues and how did you get on, and are private aids better than NHS? I don't mind paying if it makes a difference in the long run.

Thank you!

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WaitingForSummerAgain · 01/06/2020 22:18

Sorry, there was paragraphs 😱

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scarfaceace · 02/06/2020 09:16

Hi WaitingForSummerAgain

I am the same - totally deaf in one ear from a childhood ear infection. My good ear works fine though so I'm not sure how much help I'll be.

I asked the ENT consultant about a cochlear implant a few years ago, but that won't work for me as I have no nerve response. Is that something that might help you? Maybe not as you say your ear is not fixable.

I currently have a type of hearing aid (CROS) that is actually a transmitter/receiver, so the deaf ear aid transmits the sound to the good ear receiver. It definitely helps, but not in noisy situations as it just picks up every sound. I had a similar one from the NHS, but it had a wire connecting the two aids and it kept getting pulled out when the wire caught on my hair or collar. The NHS don't do a wireless one, but Specsavers do, so I've bought one privately from them. It's much smaller than the NHS one too.

I'm wondering if the CROS hearing aid might have a model where the receiver (on the good side) is also an actual hearing aid too. It might be worth asking.

Sorry if that doesn't help in any way.

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Chocl8 · 02/06/2020 11:48

My daughter has the same hearing issues (but her good ear went bad due to glue ear rather than age related loss). She’s had an aid for her good ear in the past no problem from the NHS. She’s also had a try of the CROS aid that the person above mentioned they were told not available on NHS. I don’t know if there is a postcode lottery situation for hearing aids but in our experience NHS aids have been great. It sounds like you could do with an aid in your good ear. Another thing to consider might be a radio aid. You could fit that to your aid on your good ear and it would pick up more directional sound for you. Have a look at Roger Pen. Radio aids don’t tend to get funded by NHS though. You can try them out if you are a child through NDCS but I don’t know if there is an adult equivalent sorry.
Another though - could the new issue be due to wax? That’s a major issue for my daughter and it surprises me how much it affects her ear (probably more noticeable when only one ear works)
Hope that you sort something out.

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magimedi · 02/06/2020 12:21

My DH wears aids in both ears and he found a sound bar for the TV made a huge difference. It sits under the TV & transmits its sound forwards. Most TV speakers are in the back of the set & so the sound goes to the wall.

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WaitingForSummerAgain · 02/06/2020 19:57

Thank you everyone.

@scarfaceace from what I recall my nerve is damaged too so implants wouldn't be suitable, I don't think.

I had never heard of the cros and bi-cros aids until last night. I did cry a bit after reading about them and the thought that maybe something could be done to make a difference to the bad ear too. That would be beyond amazing.

I might start a new thread to try and get some more info on them. The Specsaver person is doing a phone consultation tomorrow, and then hopefully a private audiologist appointment at the weekend.

thank you everyone for your help

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scarfaceace · 03/06/2020 10:05

WaitingForSummerAgain - I know how overwhelming it can be when you think you might find something to help. Flowers

Good luck with it all. I'd be interested to hear how you get on.

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HollowTalk · 03/06/2020 10:10

I'm in exactly the same situation, with hearing loss due to measles as a child. I only need a hearing aid when talking to certain people - it's very isolating, isn't it? And talking to people at a distance of 2m is a struggle, too.

What puts me off is the thought of wearing one all the time - I don't think you're meant to put them in just for a short time, are you?

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scarfaceace · 03/06/2020 10:40

HollowTalk yes, it can be very isolating. The thing I hate most is not having directional hearing, so if I hear a sound, I have no idea where it's coming from - upstairs? Outside? Very frustrating.

I don't know if you're meant to wear hearing aids all the time, but I generally do. I think it's down to the individual. Mine are very small, and also connected to my mobile phone with Bluetooth - it's a bit like wearing headphones. I can listen to music/audio books/radio, all directly through my aids. Same with phone calls.

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HollowTalk · 03/06/2020 11:19

So if you're in the house on your own, you would wear them? I don't like wearing headphones - I'm really not sure I'd want something in my ears all the time. And do they work OK when you're on the phone? I struggle with the phone at times. They seem to have got a lot worse lately, actually. I have psoriasis and think it's affecting my ears, too, on top o feverything else.

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HollowTalk · 03/06/2020 11:19

on top of everything else, that should say!

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WaitingForSummerAgain · 03/06/2020 12:17

@scarfaceace what make are yours?

Specsavers are phoning shortly so I will be back with an update later

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MyVisionsComeFromSoup · 03/06/2020 12:22

scarfaceace - Id be interested to know what make your aids are - I have NHS hearing aids which are fine, but I'm really interested in something which would bluetooth to phone/tablet and work as headphones.

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MyVisionsComeFromSoup · 03/06/2020 12:26

OP - my DM in Scotland has a single hearing aid, as do several of her friends, these are all NHS provided via Specsavers (who have the contract in her area). So, depending where you are, there shouldn't be any reason why you can get a single hearing aid.

I was advised to try the NHS aids first rather than going straight to private ones, to make sure they would make enough difference to justify any future cost. I found Specsavers really good actually, no high pressure sales techniques, and if I'd gone with them, they'd have sold me pretty much the same model that I subsequently got from the NHS.

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scarfaceace · 03/06/2020 13:35

I'm so sorry WaitingForSummerAgain, HollowTalk , and MyVisionsComeFromSoup - I was away from my computer.

The make of mine are: Connxx CROS RIC Transmitter, and the receiver is Advance RIC (RIC means Receiver In Canal).

They do Bluetooth to my phone - haven't tried on a tablet but I'd imagine it would.

I do wear them in the house when I'm alone - incoming calls/messages etc all alert me via the hearing aids, plus I can listen to music or audio books or the radio. Yes, I take phone calls using them - they're very clear, and I just hold the phone near my mouth to reply. I don't have a landline so can't comment on that.

They're actually not like wearing headphones, as I can't feel them. I forget they are there to be honest.

I must just say, I got mine privately from Specsavers, and they give you a month in which you can return them if you're not happy. (I don't work for Specsavers!).

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HollowTalk · 03/06/2020 14:23

Would you mind telling us how much they cost? It's great that you can't feel them. Did you get used to them quickly?

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Hangingover · 03/06/2020 14:26

If the cause of the good ear deterioration is osteosclerosis you may be able to have stapes surgery. I've had in in both ears. From 40% to 100% in one afternoon! And there's a doctor in London who will do it under local of you don't want a general.

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WaitingForSummerAgain · 03/06/2020 14:38

I have had the phone consult with Specsavers and have a test booked for next Thursday. The NHS on my area don't do Cros/Bicros so think I will need to go private. I also have an appointment booked at a local independent for Saturday.

Specsavers said the cost would likely be between £1.5-3k depending on the number of fancy features.

It will be interesting to see what both of the audiologists think.

@Hangingover I'm not sure what the cause is in my good ear, hopefully they will be able to tell me after the test, but that is good to know, thanks.

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scarfaceace · 03/06/2020 14:56

HollowTalk They were about £1500, give or take a fiver. I did get used to them fairly quickly - it was a bit strange at first when I could hear things on my phone, like Facebook videos, and I kept saying to my DH 'Can you hear that?' (He couldn't!) And I kept sitting with him on my 'wrong' side to see if I could hear him (I could if we weren't in a noisy place like a pub).

WaitingForSummerAgain Please update when you have any news - I'm very interested to hear. Thanks.

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WaitingForSummerAgain · 06/06/2020 22:27

I have been to see the private clinic today. The hearing in my good ear is actually still in the normal range, but the bad ear is dead as expected. She is going to look into options for cros that work with android and then order me some in for a trial.

As I don't need the actual hearing aid facility in general for the good ear at the moment she said a middle of the price line model for the good ear should be sufficient. She also needs to work out pricing since it should be slightly cheaper than 2 of the aids.

I am very excited to try it, and she reckons that it should make a massive difference, especially having been deaf so long in that ear so I am not expecting to have miraculously fixed hearing, just hearing a voice and knowing that someone beside me is talking would be a huge break through.

The next thing though is I need to work out options for stethoscopes as I use one at work, so if anyone has any experience that way let me know!

I think she will probably go for phonak marvels of some sort for the trial.

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scarfaceace · 08/06/2020 09:50

WaitingForSummerAgain - that all sounds very positive. And it's really great that your good ear is within normal range. Hopefully they'll find an option suitable for use with a stethoscope.

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WaitingForSummerAgain · 12/06/2020 16:51

Just a quick update, I have got the Phonak cros system today and so far so great 😃

I can hear with the bad ear, I'm sure it is going to be a massive benefit. I'm trying this for a week, then another make for a week to see if I have any preference.

Amazing😁😁😁

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scarfaceace · 13/06/2020 09:05

WaitingForSummerAgain Yippee! I really hope it works out for you. Do any of the systems work with your stethoscope? (just curious!)

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AnneHB · 02/07/2020 23:18

I have lost my hearing aid that was a victim of corona when flipped off by a facemask. So trying to decide on what to get to replace it as new technology since 2015 when got first one. Just reading over this thread, I thought to chip in that because I only need one aid, I got a discount from Specsavers of 25%. I had asked if I could have two right sided ones so as to have a spare what with their 'two for one' deal. She said if you lose it, pay back the discount and get the second one. But this offer is not available 5 yrs on. I was in habit of only wearing it for outings/meetings/classes and the very odd bit of TV. I wonder if I would need the extra functions of an App? and whether the rechargeable battery is good idea? something else to plug in and lose when travelling. I can justify replacement cost given so much money saved in lockdown!

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Bufferingkisses · 03/07/2020 00:22

Anyone looking at NHS aids please please push for a referral to an actual audiology department rather than specsavers. There is a world of difference. Our local specsavers doesn't do cros systems on the NHS and do on - but our audiology department does. It's like comparing a free NHS high street eye test to the opthalmology department of a hospital. Yes they test your eyes, no they are not the same, no they do not access the same things and yes they want to sell you things. They are a business.

Often you need to get you GP to put you through ENT to get to audiology depending on your ccg. It really is worth it.

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scarfaceace · 03/07/2020 09:43

Bufferingkisses You're right, Specsavers don't do cros hearing aids on the NHS, but the NHS only do wired ones which I've had and are a PITA to be honest.

You are also probably right about the level of testing between Specsavers and ophthalmology at the hospital - my good ear is normal and my deaf ear is completely dead, so I didn't really need all sorts of tests at Specsavers to confirm that. The Specsavers I used did tell me I could get one (wired) on the NHS though.

I do think it's worth going through your GP in the first instance to get a referral and to find out exactly what audiology think.

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