I am so glad to have found this page! I discovered I was going deaf at the start of this year - I was finding it difficult to understand conversations in crowded places and had white noise tinnitus in one ear only. I visited Specsavers - who tested my ears and said I needed more than just a normal hearing aid - they said I needed ENT to check me over. I waited - saw the ENT at local NHS hospital, and after checking me out for acoustic neuroma (have balance issues too) sent me on my way with a hearing aid that absolutely doesn't work for me - and told me I needed a neurologist for my balance issues.
Fast forward 4 months - I had to access private medical care through my work to see a neurologist (I would still be on NHS waiting list now!) who checked me over and said it was an ENT issue! Fortunately he passed me on to an excellent ENT consultant who has told me that my bad ear is not processing speech (which I already knew months ago) and after speech recognition test, that I need a BiCros hearing aid (hearing in good ear is now getting worse since last hearing test). I will have to go on NHS waiting list for this hearing aid - I can't afford to pay private prices and insurance only covers 20% of the cost. Will it be worth the wait? I am also worried that as they can't find out why my hearing has been damaged the way it has - that my good ear will go the same way as my bad one!?!
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meggiemog
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Hi Meggie - sorry to hear of your problems - I am waiting to get on the ''waiting list'' for 2 conditions for NHS specialists or hospitals. Two hospital out patients have said to keep ringing for any cancelation as NO appointments available. I tried at my health centre to be referred to another hospital - having been told there was an appointments manager for that - receptions said - ''no'' hospital appointments can only be referred by doctors - saw doctor who said see receptionist - who said the appointments manager did that!! Last thing - I was supposed to have been referred to another hospital but haven't heard anyting from them yet! Hopeless.
It is bad when you need to be seen . I think I would have cried if I waited 8 months or more to be told I was in the wrong department- then waiting to be seen again by a mediocre ENT department who didn't care in the first place. I have gone into another county via BUPA and the difference is staggering. Sad but true!
Just phoned to try to get any appointment for skin cancer at hospital (in London) to see if any cancellations had come up - was told it's very unlikely to get an appointment this way and can only get on waiting list if very urgent i.e. life threatening. There is waiting - in other words - to get on waiting list. If only private was not so expensive!
I thought if you went through your GP you had a maximum wait of 2 weeks for cancer referral? However if they think it's not life threatening they probably would wait - like acoustic neuroma- so slow growing they don't really worry about it. Only thing you can do is see your GP if you are that worried hope all goes well
It is a basal cell - which is not very serious it seems - this is the second one I have had! The last one was treated abroad. It is not like a melanoma (very serious) . The person I spoke to this morning in St Mary's Hospital, Paddington - Dermatology Dept. about trying to get an appointment through cancelation said there were ''100s of people'' waiting to get on the waiting list.
How things have changed with queues for everything.. not little queues where we waited and was seen, but queues of months. It is a postal code lottery definitely. Definitely depends on where you live. My friend 2 miles away gets very poor treatment, whereas I have been lucky so far.
Not sure if your new "aid" will entirely block out background conversations. I have yet to find one that does after 46 years wearing first one and then 2.
I think you eventually get used to that .
My biggest recommendation is to join a lip reading class if there is one near you. It wont solve all your problems but it certainly helps.
I know background noise won't be cancelled out with hearing aid - but at the moment I am getting an ear full of amplified rubbish! I can't process speech in my worst ear - I can in my good one - which is why I need a bicros. I have had the worst most unhelpful ENT on NHS - which has led to me wasting almost 12 months trying to get a hearing aid that works. Hoping I will be hearing better in the next 12 months time!
Oh Meggiemog... I do feel sorry for you as a good audiotrician is essential. Without my aids I am almost deaf. Just hear jumble no matter how high I turn up the radio or tv. The aids that I now have are Oticon (NHS) but I still need subtitles. Do hope you get two that sort you very soon. Do join Action on Hearing and get a Social worker for the deaf from your local Council to help.
I have a meninginoma which also affects balance. It is really sad that you are not being well looked after.
Hi enjoy. Hi have severe loss in both ears for high frequency sounds, normal for low frequency. I tried lip reading classes but found them very hard. I have spent so many years turning my head to the sound I find it difficult to look at the face. I also have lupus so poor concentration and tire easily. I just can't lip read! My mum has a cochlear implant and lip reads. I have 2 nhs hearing aids but don't find them useful
Have you done speech recognition tests? I know I have high frequency loss in my bad ear - but my other ear is not so bad - so I think that's why BiCROS will help. My problem is distorted sound so amplifying doesn't help.
Hi, Cros Aids, what do they do. two types, Cros, which means you have a one sided hearing loss, on your good ear you have a radio transmitter on your bad ear you have a standard hearing aid which also has a radio receiver in it, so any signal from your bad side is transmitted to the good ear which "May" give the impression you are hearing from your Bad side, on you good ear the aid can also be used as a standard hearing aid if you wish then it is a Bi Cros, if you have two ears that need help and they both have some hearing then the use of two standard hearing aids would be more beneficial, the NHS generally use the Phonak Cros system, although there are other makes where there systems do have Noise Reductions which will relate to both sides, but these are not available generally on the NHS, the cost for a decent pair of Cros aids is around £1500+
Thanks for the reply. I had speech recognition tests which have proved that standard hearing aids do not help my bad ear. I can't process speech - so you can amplify someone talking but it just sounds distorted and wrong.
I still have to see my consultant again - so it will be next year before anything is done. I work in an office - so hearing sound from both sides is kind of essential! At the moment the amount of effort concentrating on hearing exhausts me!
Why at the time when you had standard aids fitted they did not try you with CROS, without knowing your medical history, distorted hearing is a consequence of meniers, severe vertigo and feeling bunged up and ringing in the ears, and it normally effects one ear, the good ear loss may just be as it is, pity you just can’t find anywhere to try CROS to see if it helps.
I guess I was unlucky as I got the worst ENT consultant ever. He just wasn't interested in anything I said and once they has ruled out acoustic neuroma- he just said I had a neuro problem and he would give me a standard hearing aid for the deafness. Saw neurologist- who said he was sure I needed ENT - got second opinion through him - and here I am. They don't know what has happened to ears - perhaps an ear infection years ago, but it's not menieres. although I have vestibular damage. Within 20 minutes of my consultant testing my hearing- he said totally wrong hearing aid !!!
It’s so frustrating isn’t it, I lost my hearing in my left ear aged 24, one day
hearing perfect, next day no hearing in left ear and it never returned.
Fast forward 50 years and I have not found anyone in all that time that
was truly interested. Many years ago I was given one hearing aid for my deaf ear, absolutely useless. I have just muddled through, I try to avoid all
occasions where there’s groups of people. It has really impacted on my
life. I too have balance problems, but was told my deaf ear is in full working order, so it must be in my head that things have gone wrong. Apparently I have had multiple T i a’s which I must have had giving birth to my first born (another NHS cock up) As things have advanced, you can have these Bi Cross hearing aids now. I went to Specsavers and they were not all that helpful, I think with our sort of hearing loss they know that what they can give you on the NHS will not really help. I have now decided that the only way to get decent hearing aids is to pay. That’s what I’m intending to do even if it means taking out a loan. I really wish you the best of luck, but as you have found out in today’s NHS if you have some hearing nobody seems interested in helping.
I know exactly what you are talking about. I now know what I need - but getting it is another matter!
I would hope the most understanding people would be the ones who have deafness themselves - I had an audiologist who was fitting my first hearing aid saying to me - ah you only have a minor hearing loss. I was thinking- I have been told it was significant by another audiologist and a ENT nurse practitioner thinking I had an acoustic neuroma such was the loss. I went back a few months later and got the hearing aid changed with another audiologist, who tried his best to help, who was amazed that ENT had discharged me without doing more tests! I ended up going private through a scheme at work as I wasn't getting any answers. In the time since first going for a hearing test and being tested again my hearing has deteriorated - I have no answers and I really fear my good ear will go like my bad one. I have the same white noise tinnitus coming in my good ear that I had in my bad ear. The hearing in my bad ear has proven unaidable and as well as sensioneural , it also has bone conduction issues - so BAHA is ruled out.
Yes invisible indeed! I have tried to explain my situation to my boss - and he just doesn't get it! I am sitting in a position where my bad ear is facing into the room - not where I would place myself if I was going out! But on the other hand my phone is on my good side - so at least that's OK. I have my phone on maximum volume - and I mostly pick up what people are saying - not the best really! By the end of a working day I am absolutely exhausted! Love weekends - as I don't have to hear or understand anything or anyone - as the people who love and care for me know the situation and help me out. I was talking to my hubby the other day and said I could happily be put in a cupboard with loads of inputting and filing jobs with no phones and people e-mailing me when they want anything! It might have to come to that eventually! I do not have depression - but I suffer from a form of migraine as well as losing the hearing - so I get times when I get so frustrated I could scream. Thankfully a good neurologist put me on propanalol (used to block migraines) and it has helped - as not hearing and having an almost constant bad head was not great.
I hope you feel tons better in 2020 - and lets hope we BOTH get some better hearing too!
Hiya. So sorry about what you've been through. I had an almost identical experience to yours. Thought I had an AN - sudden loss right ear - no answers. I'm being treated for menieres disease as I have hearing fluctuation. I asked my ENT for emergency steroids (prednisolone) in case it happened again. I couldn't get to see a GP as they basically dismissed me - so I - like you - am petrified that it will happen again - so I keep steroids in case. When I had covid my hearing dropped a bit. I then had shingles on my good eardrum - and the Docs were amazed I kept my hearing and didn't get facial palsy. I would recommend that you ask them for regular hearing tests - tell your ENT how worried you are. Also ask if they would consider giving your steroids just in case - or how you could reach them if something happens. I had to pay from my own pocket to see an ENT and get an MRI as we were in lockdown. I have an oticon hearing aid which is OK - tinnitus is an absolute horror as I have it in both ears now. Can you ask them how long it will take to get the aid?
Hi there!Yes I finally got my Bi-Cros in November last year (between lockdowns!) - it has given me more confidence, but I still have no idea what caused this deafness. I have never been given steroids, as they put my balance issues down to vestibular migraines. I was given propranolol to help prevent the migraines, which to a degree has helped the dizziness - although that still does happen on occasion. My tinnitus has never been a massive issue for me as it is like white noise - (fizzing - like being between radio stations) I will be getting in touch with audiologist to get another test before long as I feel I need the volume turned up in my good ear!, my bad ear just has a microphone that has sound blue toothed to my good ear. I know people are not being seen for months - so I am lucky to get where I am, and I am grateful for that.
Hiya. I didn’t read this as 2 years ago. So sorry. Whoops. I had my aid increased for high frequencies. I also get migraines. They think that may have caused it. I get a fizzing too. I’m on Betahistine for dizziness but nothing works for my migraines. Absolutely horrible isn’t it? The ear issues and migraines together. Sending much love x
Hey no problem! It seemed like an eternity waiting though! In fact I found out that I had been 'lost' at one point. Would I have got this sorted without seeing a private consultant? Probably not. I chose someone who worked for both private and NHS - he was actually a BAHA surgeon. He did tell me I had cochlear damage and that biCROS would be my best bet.My advice to you is if you feel your aid isn't helping as well as it could, then make another appointment and see if anything can be done xx
Same here! I went private then he cross referred me to NHS. He does both. I’m looking at middle ear implant long term as menieres damages hearing progressively.
It's good to have options! I love music and that was another pointer for me that something was wrong. I now have to wear headphones to hear it properly. I guess we are lucky that we do have choices that were not there 20 years ago. Hearing technology is absolutely amazing.
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