Thread for those of us that are deaf/hard of hearing?

[flamingo40]

I've looked through the health topics and can't find any particular areas for those of us who are deaf or hard of hearing to turn to if we are after advice or just fancy a chat with people who are in the same situation?
I guess I'm asking firstly if I'm missing something or secondly if there isn't an area we can go to would this be something Mumsnet would think about adding?

Having been hard of hearing for years and now a permanent hearing aid wearer I'd love you get help and advice and talk about experiences to other people

That’s them!
they basically just fit over the wire so nothing around the back of the ear at all on my aid. They serve no purpose at all other than to look shiny 😂

I might jazz mine up a little!

Get some stickers and coils

I’ve probably said this before but people with normal hearing just don’t seem to realise that hearing aids and accommodations don’t magically turn you into a normal hearing person. They just make you more functional than you would otherwise be. Just like a wheelchair doesn’t enable a paraplegic to walk, just to be able to move around.

It would be useful if more employers could, for instance, expand the use of workplace chat channels and text as an alternative to phone calls, or re-site HOH employees in quiet offices for phone calls so that they can concentrate on the conversation, or be understanding of challenging auditory situations like strong accents, poor reception and background interference.

Also, hearing aid technology is improving all the time but tech is a total and utter minefield and we all need a LOT more support and specialist knowledge to get the best out of it. In my new job I can’t get on with the shop floor comms system because the headset doesn’t talk to my hearing aids. I have to use an old fashioned walkie talkie to relay queries. I’m sure there must be a tech solution that doesn’t cost a small mortgage but nobody knows anyone with the answer.

I’ve just posted this in general health but found this support group so thought I’d share here hoping to get more experienced opinions!

I first noticed my hearing wasn’t great in 2021, went to Boots for a free hearing test and they picked up on a mild cookie-bite style loss. Told me to speak to my GP which I did and got referred privately through my health insurance to an ENT specialist to check if there were any treatable causes. He did bloods and an MRI and found no obvious cause. As part of his assessment he referred me to a private hearing test service who advised that Boots test results aren’t always accurate. My hearing loss from their test showed a mild cookie bite sensorineural loss. They let me trial behind-the-ear hearing aids for a week but I really struggled with the rustling from my hair and didn’t feel they were making a massive difference to my hearing so I decided not to go ahead.

It’s now 15 months later and I feel my hearing has deteriorated. I went back to boots for another free test and their results show my loss is now in the moderate category. I’m not sure I trust the result is 100% accurate after being told their tests aren’t as good as at the private place, however my understanding is that any NHS referral for hearing aids just goes straight to Boots or Specsavers anyway so surely they have accurate tests? I’m only 34 and worried that things are going to get worse and not sure what to do.

Do I go back to the ENT specialist, assuming he’ll refer me to the private hearing test centre for confirmation of the deterioration? Should I just assume there’s no treatable cause for the loss and go to my GP for an NHS referral for hearing aids? I’d like to trial in-the-ear hearing aids to see if there’s less rustling. Can I get those style of aids on the NHS or would I have to pay privately for those? Are NHS hearing aids as good as the private options? And if I do go privately should I go via the private hearing center I went to previously under the ENT specialist? I’m so confused and don’t know what to do! Would really appreciate some mumsnet collective wisdom! Thanks!

@Cactuslover88 I’ve recently had an NHS hearing test, (well back in mid December) I had it at my doctors surgery after seeing a notice saying “Book a free hearing test here”.
The test wasn't done by Boots or Specsavers, it was done by Scrivens, Hearing and Sight providers. I’d never heard of them so googled them, they seem to have a good reputation.
I was offered a choice of NHS or private hearing aids I opted for the NHS, behind the ear type. I’m getting along with them, I’ve downloaded an app called BeMore, it lets me adjust the volume and filter out background noises, alter the speech clarity, it tells me when the batteries are running low.
Yes the rustling of clothing, hair and other noises I’ve never noticed before is disconcerting but it’s getting easier especially now I’ve got the app to help with that.
I may decide to go for the in the ear type at a later time,m depending how I get on with the NHS aids.
The private ones ranged in price from £999.00 battery operated a pair to £1.300 for rechargeable per pair.

PS I was offered in the ear private aids, 2 types of behind the ear, (one set was slightly smaller due to being rechargeable and not needing a battery compartment)
The NHS aids are just slightly bigger than the private type.

I have the Bluetooth nhs aids and the bemore app too. The rustling will be disconcerting at first - even light switches sound loud! But give it time, your brain will adjust to what it's hearing.
Also, I have the very small ear buds. The larger ones irritate my ears, so I'm not sure I'd ever get on with the in ear type.
Oh, and finally, they will feel big at first - the behind the ear ones - but I think that's perception too. I wear my hair up a lot and people are always amazed when I say I have hearing aids because they can't see them (and I have small ears). It's taken a while but 5 years in and I wouldn't be without mine. They make such a difference.

Thanks both, I appreciate the advice! I’m not really sure whether I should be worried about the level of deterioration in the space of just over a year or not. Is this something I should pursue with the specialist knowing he couldn’t find any issues last time? Would you go back or is it just something I need to accept?

Also a comparison of the two tests, 2021 and today

New tubes have arrived!

im now at the stage where when I take them out at night I feel like I can barely hear and honestly don’t know how I coped without them.

I LOVE these!! I'm definitely going to get some!

@Cactuslover88 Welcome!

I was a similar age when I started to lose my hearing. Are you able to get an appointment with Audiology? Can your GP just refer you to your local hospital? I would start there. It's not because I think Boots are terrible, but I've had Boots hearing tests and many NHS ones at different hospitals and I prefer the NHS ones. Also, everything is joined up - your ENT consultant with Audiology in one place, which I like.

I'm a Teacher of Deaf Children and Young People so see a lot of audiograms. Has anyone ever done a bone conduction test? I can't see any evidence of it in those photos. That will at least hopefully help determine if it's a conductive or sensorineural hearing loss.

They think my loss is conductive but they've never found the reason. If yours really is deteriorating that quickly, then you will want regular audiology appointments so they can monitor plus perhaps a consultant looking in to a cause. There are operations they can do to try and determine the reason for a loss (although I declined as there's a risk of worsening the loss through surgery).

My left ear has deteriorated quicker than my right so I have been referred to ENT to see if they can find a cause. I have two NHS BTE aids and get on very well with them generally, although my new ear moulds are not so good!

Feel free to ask questions as much as you want. We're all nice and friendly 😁

Hello I'm a Teacher of Deaf Children and Young People too and was going to say what @SuziLikeSuziQ has just said. I don't understand why the GP sent you to Boots. Here and in neighbouring areas at least a GP referral would send you to the hospital audiology and you would get NHS hearing aids. I would go back and ask for that.

The change could be age related - how old are you? Although that would tend to be high frequencies. And as Suzi said I would ask for a bone conduction test so they can see if it could be congestion or something causing the loss.

Thank you both so much for your comments and advice. To answer your questions, I’m 34. First noticed hearing loss in 2019 so around the age of 30. I’ve had the bone conduction test at the ENT specialist and he confirmed that the loss is sensorineural, not conductive. My GP referred me to the ENT specialist back in Nov 2021. That’s when they told me they couldn’t find a cause after MRI, bloods and various other tests. That’s also when I trialled BTE hearing aids but decided against it as the loss was mild and I didn’t like the rustling of the aids with my hair.

It’s been just over a year and my perception is the loss is worsening. I haven’t had any further contact from GP or ENT regarding follow ups so I thought a good starting point would be to nip into boots for a free hearing test to see if that showed any deterioration.

I think as I’m new to this I didn’t know what was the right course of action. I’ve now made a GP appointment for Tuesday to discuss this with them and will see what they advise.

I just wondered if no cause was found from all the ENT run tests last time if they’ll do any further investigations now they have evidence of the rate of deterioration (pending a better quality full hearing assessment) or whether it’s just a case of going down the NHS or private hearing aid route now.

Thanks to all the kind people who have replied.

@Cactuslover88 It's good you've got another GP appointment. Hopefully a referral to audiology can get the ball rolling. If they do identify a loss in the past year, they'll want to investigate and probably see you fairly regularly. Only being seen once every year or two is normal unless there is something a little less usual, like your potentially quick deterioration.

As they've determined it's sensorineural, you can decide if you want them to investigate the actual cause. There could be a few different issues in your inner ear. But investigations like surgery, as I said, have the risk of damaging the hearing further.

Looking at your recent audiogram, they will recommend hearing aids again. It's up to you. If you can get and want private ITE aids then go for it. As an NHS BTE wearer, I can say that I do notice my hair rustling sometimes, but I don't mind too much! You have to go with what's best for you, though.

I hope Tuesday goes well. Keep us updated about audiology and holler if you need any support!

Cookie bite loss isn't age related @Cactuslover88 . I have this in my left ear, which was caused by a virus in childhood, but it can also be genetic. The audiogram in my right ear is completely different. It looks like a slope, with the high frequencies going first. This is what age related hearing loss looks like

With your type of loss, you should be under the hospital. I was also told by the nhs that their hearing tests are better

@Cactuslover88 the rustling of my hair drove me mad at first but now I don't even notice i unless it's windy. As you get used to wearing aids your ears tune out some of these sounds. I definitely agree with you about it not being great being referred to Boots. I've had hearing loss since I was a child and I've had a hearing aid for over ten years. I suffered a sudden additional hearing loss in November and, when I asked my GP for an audiology appointment, I got sent to Specsavers. The audiologist didn't seem particularly competent, for example she said she couldn't see my ear drums. When she diagnosed profound hearing loss she started texting her supervisor to find out what to do. If I had been sent back to the hospital audiology department I might at least have had a competent audiologist and they would have had my previous audiogram to compare to.

Thanks all, I’ve been referred back to the ENT specialist by the GP now so hopefully the deterioration will be properly assessed. I appreciate the advice that the rustling becomes less noticible and to persevere. Will let you know how I get on. @StuntNun that’s very frustrating, and not being able to trust the person assessing you is not helpful. It’s a vulnerable position to be in when you’re hoping for a professional level of reassurance! Like with the Boots test which showed such a change for me I’m now worrying about it even though it’s probably making it out to be a lot worse than it is… fingers crossed!

@Cactuslover88 I definitely sympathise with the rustling. I find that once you get your hearing aids and they are programmed with a range of settings, you can adjust them so that you can hear better but the rustling is also at a manageable level...plus you also do acclimatise to it, as it were. The overall benefits far outweigh the disadvantages. I was also quite young when advised I would need hearing aids and it came as a shock. I cried..and the lovely audiologist was quite taken back and said - but I can help you! Aren't you pleased??!

Now I wouldn't be without them. :)

Regarding the rustling, it could also to do with the nature of your hearing loss. Cookie bite loss is notoriously difficult to get right with hearing aids because it's the mid frequencies that are affected the most. If the audiologist is inexperienced then they may well have turned up the high frequencies too much, which would make high pitches, such as rustling, unbearable. The audiologists at Boots and Specsavers tend to see the over 65s, who would likely have presbycusis (age related hearing loss). That is what they are most used to treating. Apparently, the hospital audiology department wanted to keep me as I am an interesting case, suffering from asymmetrical hearing loss. You can read more of my story here

I have had a problem with my left hearing aid. The right one has a bulb but the left one has a mould as it fits the ear better as l have had major operations in that ear. However, it is an old mould and the tubing constantly slips out. I have been worried that that l might lose the aid altogether. It came to a head the other day so l took it to our local private hearing centre as it would be weeks before I could have anything done at the hospital. The private audiologist tried to suggest l buy new hearing aids but I said I was perfectly happy with the ones I have. However, he said that he would be able to make me a new mould with a tube attached to it. It is just under £300 but will be worth it for peace of mind. He will also retune the aids if needed. I think they need to be made louder.

If it helps you can buy little rubber grips on Etsy that attach to the hearing aid, which you then fit to a chain like glasses etc. if it falls out then it won’t go far.
I mentioned upthread but I was concerned I’d lose mine on rollercoasters so fitted a chain with an earring on the end so if they fell they were physically attached to my ear.

@Jyn thank you.

@gandalf456 I never thought of asymmetric hearing loss as interesting! Most people assume I can hear fine because one ear works and underestimate how difficult it can make things. I went to a comedy concert yesterday and it was very frustrating that I could hear the music but not really understand the words. Curiously I found that blocking my good ear made it easier to hear, presumably because it blocked out all the high frequencies.

@StuntNun, for most of my life l had asymmetric hearing loss due to a mastoid operation on my left ear when I was ten. This was in 1975 and the “advice” given to my parents was that as l had perfect hearing in my right ear, it would compensate for the severe hearing loss in the left ear. Oh, and I would have no directional hearing. In other words - get on with it. So get on with it l did. The only allowance ever made was in languages O levels where I was allowed to sit near the tape recorder for the dictation parts of the exam. It did make me really good at lip-reading.