For Those of us who are Deaf or Hard of Hearing Part 2

[Violinist64]

The original thread is almost full and I have found it extremely helpful so have started this new thread.

@NanTheWiser had you had nhs aids previously and did you find your private aids much better?
I'd been told previously (when my hearing loss was less severe) that the only advantage in going private would be a smaller aid, but I'm not sure that's still the case.
May I ask, was it 3500 for 2 or per aid?

No, these are my first aids, so nothing to compare with. I am nearly 78, and have had a degree of hearing loss (high tones) all my life. I have become much harder of hearing over the last few years, so decided to bite the bullet last summer. I have moderate loss in low registers, but profound loss in high registers, meaning I couldn’t hear birdsong, or the doorbell very easily. They also have blue tooth connectivity.

I have to say, they have transformed my life! I can now hear what my friend says when sitting across the room, and TV is so much better (still use subtitles though!),and I’m really pleased with them. The cost was for a pair.

If you are looking at Private then a Costco membership may be worth it as my Jabra Enhance Pro Bluetooth, rechargeable aids cost me £1200, and they have similar priced fancy Phillips and another brand. Only 10 audiology centres in the country at the moment though.
I only have mild-moderate loss, but a friend with quite severe loss got their Phillips models and is amazed at how much better they are to his NHS ones. First time he can hear speech properly in noisy environments.

I was surprised to learn recently that the most powerful aids (receiver in canal RIC, behind the ear aids) are simply not available on the NHS - in my area anyway.

This astounded me as I am now heading towards a cochlear implant despite RIC aids, as my hearing declines. Presumably if I hadn't been able to afford the RIC aids privately I'd have had to go to cochlear implant earlier, costing the nhs £20k minimum- how can this be? I asked my audiologist and she didn't really have an answer...

I had my detailed audiology appointment with assessment for hearing aids today. It was interesting to see that the bone conduction test showed that my hearing was almost normal via that, so I am planning on buying a pair of bone conduction earphones. Has anyone ever tried them? I have friends who use them, but none of them have hearing loss.

@Latenightreader - conductive deafness needs further investigation not just bypassing it with bone conduction aids - some conditions are amenable to surgery. Or have you already been investigated, and aids are the way forward?

I have a diagnosis of probable otosclerosis, and having joined a Facebook group about it and read tales of surgery not working or failing at a later date, I’m very happy to put that off unless it becomes necessary. The consultant I spoke to did say I could be referred for surgery, but talked a lot about the risks so really put me off. To be honest this is still all very new to me.

Glad to hear your decision is well-informed!
I should think you'll find bone conduction aids a game changer, as you have a working inner ear just waiting to get the right input! Hope it all works out for you

I've found my people! I have congenital hearing loss and needed hearing aids in my 30s. After a v long wait, I got bluetooth enabled Danalogic GN hearing aids which have really improved my quality of life. I've also been happy with my audiology dept which sadly sounds hit and miss from this thread.

I've read the whole thread and found the access to work info v helpful. I used to get by lip reading and guesswork in conversations. I wish I'd learnt BSL earlier but that wasn't an option which I was younger. Has anyone learnt as an adult and can recommend a course? I've looked online and it's a big financial investment to make without a recommendation.

So glad your hearing aids are helping. I heartily recommend the City Lit lip reading courses if you are in travelling distance of London. At 68 I'm finally learning BSL - totally frowned on when I was a child (do they take sticks off blind children and say off you go?!) Its gradually going in! There are lots of BSL videos tro learn sign on You Tube - Commanding Hands is especially clear

Bah - missed out information that again if youre in London, CONEL (In Tottenham) does free Level 1 and Level 2 BSL classes

@repeatpleaseagain thank you very much for those suggestions, I'm enjoying the Commanding Hands videos and will look up the City Lit classes. Love your username BTW!

A pleasure - the City Lit classes are expensive but well worth it but what is great is the other people on them - you realise that being deaf does cause extra work! and thank you for the compliment on user name - the alternative was I heard that pardon!

Hello all - hope everyone's well today

My GPs have changed their hearing provider contract out of the blue so - slightly infuriatingly - I'm having to get new hearing aids even though my NHS ambio danalogics work perfectly fine. The new ones are bigger and only work with iPhones so I've had to buy one of those and move off android. Plus kit I bought to go with my ambios is now not needed I guess!

They will be Signia Stretta - still Bluetooth thank goodness but the ones with the hearing loop would have been massive so I didn't go for them (I don't often use the loop as most places it's bust anyway. Plus it is already a bit of a fight on my ear for space when I'm wearing my glasses and the weight leaves a slightly sore patch. )

Obviously it's performance that's most important at the end. Does anyone have experience of using NHS-issue Signia Stretta with Bluetooth? Thank you - and it goes without saying I am grateful to have them going by the woeful experience of others on this thread!

Slightly random one, does anyone here ski and wear a helmet? I tried my helmet on as going away soon and found the HAs are not very comfy inside the helmet at all. Ears feel squashed and it pushes the in ear receiver in more than usual... think I am going to not wear them when skiing, it'll be harder work lip reading but I was doing that before I knew I was hard of hearing! Any thoughts?

@PeskyandIknowit I have Oticon Real aids and ski with a helmet with no problem.

My helmet predates my HAs but I remember having to try several before I found one that was comfortable. They're very different so you might need to try out some others. Some have removable ear pads which might be more comfortable.

Different helmet - you need to hear if there's a massive problem thundering down the slope behind you (whether human or snow) and if you do have a spill, you don't want people panicking and calling for an emergency evacuation because you can't hear them very well, so don't respond exactly as they expect when you've had the wind knocked out of you.

Although this thread hasn't been posted on for a while I'm wondering if anyone has had any experience of applying for PIP with profound hearing loss? I've has otosclerosis as well as inner ear hearing loss since my early 30s and now I'm almost 50. Ironically I've been learning about how to help with applying for PIP as part of my work role and have realised i could fit the criteria for lower rate daily living. Any experiences?

I wanted to post a hopeful message here. I have been having a lot of problems with my ears in the past few months. Peterborough hospital has been absolutely marvellous. Among the help I have had is a new mould for my right hearing aid. The audiologist was very helpful and made me a Heath-Robinson temporary mould and took impressions for the permanent mould, which he said he would post to me. It arrived this morning and is fantastic. It is much better than the previous fiften-year-old plus mould. The old one was hard plastic and fitted for my (very small) ear canal. It was always moving and making the tube and behind the ear part fall down, which wasn't very nice. This one is made of silicone and not only goes down properly in the ear canal but also has a much larger area in the top of the ear so is much more comfortable all round.

@perkyochrepeer

I have bilateral cochlear implants (7 years ago) and I am told you would never know from my speech I have even the slightest hearing loss. When I take them off I am 100% deaf. Prior to that I had hearing aids. Happy to answer any questions.

Hi @Ibizafun, can you enjoy music with your CIs?

My hearing has been deteriorating rapidly over the past few months and it has got to the stage where it is having an adverse effect on my music - l am a professional classical musician, teaching piano, violin and viola as well as accompanying, albeit semi-retired. I had a (free) hearing test with a private audiologist and was shocked and not a little upset at the results (l hope l didn't show signs of being upset). I commented to the audiologist that it didn't look very good and he agreed. It seems l have a mixed hearing loss, which means I have sensorineural loss and a conductive loss, which I knew l had but have only been treated for the sensorineural part by the NHS as far as I am aware. He took into account the left ear, which is where I had two mastoidectomies and has a bigger loss. He also thinks l have signs of otosclerosis, too. My right ear has a 40-50 db loss on average and my left ear has a 50-70 db loss on average. Interestingly, both ears have a high spot of 30 db loss at one point only in the middle range. He said, when I asked, that my hearing will only get worse over time.I was able to practise with hearing aids at the correct setting and there was a superb programme for music. The difference was night and day. It also made me realise how inadequate my present aids are. I would also have six monthly hearing tests instead of the three yearly tests on the NHS. I think that this is the way forward for me as long as we can get the £££ in place.

As a footnote, l now realise why I have been suffering from severe exhaustion for some time as I have been continually straining hear and relying on lipreading. I now say that I am deaf. I have never liked to think of myself as disabled, but the degree of hearing loss l now have is a disability and, sadly, still a hidden and misunderstood one at that.

Hello @Violinist64 and thanks for your post. I recognise quite a bit of that myself and very much empathise.
I'm not a pro musician but I'm very much involved as an amateur in a variety of orchestras, bands, choirs etc. Whether I'm singing, or whether I'm playing piano / oboe / french horn, I'm finding my hearing loss is making this more and more difficult, especially the difficulty in going from very loud volume (e.g. the whole band playing together) to much quieter volume (e.g. the conductor giving instructions). I also find it much harder to listen and blend with the whole musical group, compared to what it used to be.

I currently have NHS hearing aids, and my NHS audiologist clearly told me, these are not designed for music but for speech. They don't work very well when I'm actually playing or singing (as they just maximise the volume and typically the total volume of the group is already high),

So instead, I'm investigating private hearing aids and have an assessment set up with Hidden Hearing to see what they might be able to offer me. I am not looking forward to paying a high price but also I don't want to feel I can no longer take part in music.

@Violinist64 and @PotOfTulips I completely agree that while the NHS can be great for a more common hearing loss, if you have an unusual loss (as I do) or special requirements (as you do) then a good private audiologist is the way to go. They are not all the same so make sure you choose someone who understands your particular issues.

I think all aids are primarily designed for speech, but the more sophisticated ones allow for a degree of customisation that can be used to improve the music experience. I don't know what make of aid you're considering, but the Oticon Users Facebook group has a few audiophiles on it who will happily share the specific adjustments that have helped them.

I echo the comment on exhaustion. When I got my first aids my main reaction was that I was less tired, not that I could hear better.Good luck and be persistent, it can take a while to find the right person and to get the specific adjustmets right, but it's well worth it.