Anyone with hearing loss or hearing aids?

[BobbysBeardOfWonder]

Just been to hospital to have a hearing test, turns out I have Otosclerosis (my mum has it too). It's quite common to notice it during pregnancy apparently, it did definitely get worse when pg with DC2 this year.

Treatment is either a hearing aid or surgery to replace the bone that no longer works.

Can anyone tell me their experiences of a hearing aid? I'm 31 so tbh the thought of one of the NHS type that goes behind the ear leaves me a little :( although I know the in-ear ones you can get privately are around £1000?

I wasn't expecting any of this really so am just starting out researching on MN :)

Hi BBW, firstly I want to say I'm sorry that this has happened to you, even if you thought it might be likely because of your family history.
I have hearing loss in one ear, originally my GP thought it was also otosclerosis but it turned out to be Meniere's disease. I have an NHS hearing aid which is actually quite small and not really noticeable when I wear my hair down (which I always do anyway).
My caveat about hearing aids, which I was warned about when I was fitted for one, is that it won't necessarily replace your hearing - ie if you have profound hearing loss like I do, it can't get you back to where you were before. For this reason I don't wear my hearing aid often, because I don't always find it beneficial. I have the added complication that it can make me feel very dizzy, which doesn't help with the Meniere's.
Another thing to bear in mind is that with profound hearing loss the in-ear aids are no good, apparently. I was encouraged to get my hearing aid asap, before NHS funding for the good digital ones was withdrawn.

Thanks for replying. My hearing loss is 30-40% so not profound but enough to warrant action. I just have no clue where to start with hearing aids

Will your hearing deteriorate or is it stable now?
Have you been referred to audiology and a hearing therapist? (I can't remember the exact title, but they are people who give you strategies to cope with hearing loss, tinnitus etc) You should be given an appt for an ear moulding, then you go back and have a fitting for the hearing aid, then you go back about a month later to report progress and to have adjustments. With the NHS ones I wasn't given any choice, so there wasn't really any confusion. I guess if your hearing is stable you might be able to go private and get an in-ear one - I'm afraid I can't advise about those - but bear in mind that they are less effective at higher levels of hearing loss (I'm not sure what that level is exactly)

Sorry to hear your news.

Mine is deteriorating fairly rapidly but unexplained - the outer and middle ear mechanics are intact, so they're looking for neural damage.

My consultant wants me to avoid hearing aids for as long as possible and use "hearing strategies" in the meantime. I rely heavily on lip-reading and subtitles. I find that strangers are awkward and self-conscious but helpful and accommodating.

Good luck x

Hi i have been diagnosed with exactly the same thing this morning....its a bit of a mind field isn't it. To add to the impact my doctor had told me that I would be wasting the consultants time, as he didn't think there was anything wrong with me!

I have turned 40 this year and that was hard enough, never mind this too, so i am totally with you on have an in the ear aid rather than the NHS alternative. but cost is a big factor isn't it. Have you got any further in your search?

xx

Hi, I am sorry to hear your news too. Hearing loss can be quite upsetting and have a huge impact on your life. Although I do not have the same condition as you I have severe hearing loss in one ear to the point of being almost completely deaf on that side. Thank fully the other ear is okay.

I have a hearing aid supplied by the nhs. It is a digital over the ear aid. I have to say I found the consultant and the hearing aid person (sorry can't remember his official title) very helpful and supportive. I am sorry this has not been everyone's experience though.

bobby has your consultant refered you to the hearing aid clinic now? I found staff there very knowledgeable and helpful. I would think that would your next step to find out what is available and how much it will help you.

horatia my deafness is caused by nerve damage and they did explain the hearing aids will only amplify what hearing you still have in this case. So perhaps this is why they have suggested you find some coping methods. I very rarely wear my aid as it adds very little to my hearing. I think for other causes of deafness they can be more useful.

Hi porky, sorry to hear you've been diagnosed with the same thing.
I'm not sure if I'm dealing with it all very well or whether the shock will catch up with me soon...I'm 31 so I just don't feel ready for hearing aids yet However it has to be done, otherwise I'll go through life struggling to hear.

I went to a specialist hearing aid centre in my local town (Amplifon) and am booked in for one of their hearing tests next week. You don't need the referral from hospital.

The receptionist said the type of hearing aid best suited to me will depend on the type of hearing loss I have.

I talked at length to my mother who has the condition, and also my brother who most likely has the condition too (didn't even realise he has 2 different pairs of hearing aids as he hardly ever wears them! )

Anyway I would do your research, maybe get tested at a shop & take it from there. I will report back after next week if you're interested!

My son got digital in the ear hearing aids on the NHS several years ago . I don't know if age is relevant to what you get offered ? Prior to that he had private in the ear aids. Having said that he has bilateral 50% loss and hasn't worn aids for the last 6/7 years as he refuses to accept he has a problem , and it doesn't seem to have affected him .

Hi. I've had hearing aids since I was 14, so 20+ years. I know little about oto except a friend had surgery for it a few years back.
Re hearing aids - the NHS do offer both aids and earmoulds in various colours now. Just they often forget to mention it as so many people just want something 'discreet'. Thing is, in the ear ones tend to be crap beige and more importantly take forever to make and if it breaks you're screwed. And not provide very good amplification as they aren't very programmable.

Whereas ITE aids look like you have a phone earpiece or music receiver or something else cool. I have black aids and bright moulds (NHS!) and have added rings to the tubing, and people always assume they are piercings and/or earphones.

I would recommend getting aids if needed earlier rather than later as a bug problem is your brain will forget how to interpret sounds if you can't hear well for some years. I'd probably hear pretty normally if todays aids were around when I was born. Though they are only a help not a miracle cure - getting the confidence to insist people sit so you can be back to the window and they don't speak over each other etc is possibly more helpful than anything else.

Oh I thought the NHS only offered behind-the-ear aids now? Maybe I should check again with my doc

Another Menieres sufferer here. I am about to get a hearing aid privately from Boots. Going private is expensive, though. Watch for special offers and sales. Contrary to what someone else said, I have been told to wear mine all the time as that is the only way for the brain to adapt and balance the ears.

I read that too GreatResult, about needing to wear them all the time.

Bother, meant BTE aids. Yes, behind ear is the default but they both work and look better - when I had in the ear ones I had kids asking why I had chewing gum shoved in my ear!

Any aids need to be worn regularly for your brain to adapt. And if it isn't comfortable then one needs to go back and get it adjusted until it is comfy enough to wear all day [gives MIL hard stare...]

I'd be very wary of private sellers as they often only have models to suit elderly people's typical loss and demand for invisibility, and some use hard sell techniques and make disingenuous claims about NHS provision.

Thanks for the advice. I'll tread with caution at my appointment next week. I'm not handing over ££££ willy-nilly!

Coming to terms with deafness when youre not 'old' is hard, but youre in good company! For me now it's a bit like being short sighted, I just have to put on specs and hearing aid before I'm fully awake...

I have SSD (single sided deafness) due to an obscure middle ear growth, (nerve thankfully intact) and got an excellent bone anchored hearing aid through the NHS. I couldn't have an in ear one due to infections. They put a metal implant through the skull behind the ear an the hearing aid pops on to it. It's hidden in my hair and I wear it all the time I'm awake, without it I'm lost in space and get tired working out what's going on.

I have had surgery to my middle ear which was useful for a time.

Look into all options and find a friendly audiologist at the hospital.

I have the over the ear type in one ear only. I have partial hearing loss in both ears with virtually no hearing at higher frequencies. There doesn't seem to be any reason however I have tiny child sized ear canals. I've had it for about 4 years (I'm 49) and still not really used to it. Notcitrus is right about needing to wear them frequently in order for your brain to adjust. I found (and still find if I haven't been wearing it as often as I should) that I can get distracted by other sounds drowning out voice eg clattering cutlery in cafes.

On the other hand it is absolute bliss to take it out on the train after a day in work.

I found myself a little upset after reading this thread because some of you have not had the support from your GP or hospital consultant. It seems a shame that you are struggling alone to find a way forward or looking to use a private company when I found my hospital very helpful.
I suppose it just marks the difference in people's attitudes and funding provision in different parts of the country.

I found a learn to lip read group very helpful (although I was the youngest there by 25 years). It was free and I learnt some tips about how to cope.

I also think the BTE aids are not very obvious generally but I think it adds to people's awareness of your problem. I have often found myself feeling stupid or being treated as such because I am struggling to follow a conversation. I wish I had a "Deaf not Stupid badge" At least the aid makes it clear why.

Is anyone scared of the future and further hearing loss? I am terrified of losing hearing in my good ear.

Asinine, just seen your post and it sounds as if you may have a similar condition to me. I am awaiting surgery for a cholesteatoma and have been diagnosed with hearing loss - after the op they are not certain whether my hearing will improve, stay the same or deteriorate. If this was the type of op you had, would you mind pm'ing me to tell me a bit about what is was like because I haven't been able to find anyone else who has had this type of surgery.

Whyme2, I too am worried about losing hearing in my good ear - and am also worried that people's experiences with hearing aids don't seem to have been very positive.

Dotty Have pm'd you

I know what you mean about the hearing aids. When I was first diagnosed I put all my hope into a hearing aid fixing the problem. The consultant was very kind and gently explained that it would do no such thing but it may help a little. It didn't really help and I was so very disappointed.

That is why I think it is important to have some support and learn some tricks and tips to help you get by. As I said I learnt a lot from the lip reading group I went to and some stuff I read online (don't know where now though). Things like positioning yourself when having a conversation, saying straight off that your hearing is bad, learning a little lip reading, trying to eliminate background noise etc. I also had a lady from adult social services with some advice and aids like a vibrating alarm clock, doorbell, baby alarm. The fire service also installed a flashing/vibrating smoke alarm. I was referred for this by my consultant.

I use an NHS BTE hearing aid, following hearing loss in one ear due to Meniere's. I don't find that I can hear any better, but I do at least have some idea of what direction the sounds are coming from. Sometimes, though, even though the hearing aid is adjusted by my audiologist, background noise just takes over and I have to switch it off.

I don't want to hijack this thread, but notice there are several on here with Meniere's. I am going to start a fresh thread on the subject as I am really struggling at the moment with symptoms and could use a chat with fellow sufferers. (There is an old and very lengthy vertigo thread, but not specific to Menieres) . Hope to see you over there. Apologies, OP, and I do hope that you find a hearing aid that helps.

OP, I'm sorry you're having this problem. I was diagnosed with mild hearing loss in one ear which they think is caused by Menieres disease.

I've got a BITE hearing aid. It's very discreet, and I was able to choose brown to match my hair. It's changed my life. While my hearing probably isn't what it was before the hearing loss, I can hear conversations much more clearly.

The aid is more discreet than an in-ear aid, as it's tucked away behind my ear, and the tubing and earpiece are clear plastic. People don't generally notice it unless I point it out.

I wear glasses to help me see - if I didn't I'd walk into things. A hearing aid isn't much different.

I was initially really upset to have to wear one, but I'm really glad I do.

Great thread for the hard of hearing. My sister had otosclerosis and had surgery which successfully repaired her hearing. Unfortunately she now has it in the other ear.

I too have poor hearing in my right ear do I thought I had it as well. The ENT ordered a scan but it showed that my inner ear is fine and that the deafness is caused by a congenital virus that's gone undetected. I'm loving all the feedback/advice on aids as I have brushed this problem aside when the MRI showed a large brain tumour (meningioma, and benign) which I had successfully removed on the 20 Sept. hooray!