Serious hearing loss in adults...any experience?

[kokeshi]

I've just been up at A&E today...I am almost totally deaf and pretty desperate. I first noticed my hearing was dull about 3 months ago which co-incided with a head cold. I was prescribed gentamycin ear drops and an antibiotic. The cold cleared but my hearing didn't improve.
About 3 weeks later my hearing went totally in my right ear, but the left one was still ok. I've been back 3 times since, (3 different docs) and have had an array of nasal and ear sprays and another course of antibiotics. Each time the GPs looked in my ears and said there was a blockage...like glue ear in children. I was referred to ENT 5 weeks ago and have an appointment in December (way too long).
So, 2 days ago, the hearing in my left ear deteriorated so much that I can hear almost nothing at all. It's really distressing and it affects everything. The intern there told me today that glue ear wouldn't cause such profound hearing loss and I have to go back on Monday for a test.
Does anyone have any experience of what this might be? I had been grasping on to the possibility it could be fixed relatively easily if it was glue ear but now I'm frantic that it's more serious and/or permanent.
Thanks for reading this far, any help will be gratefully received.

kokeshi, has anyone mentioned otosclerosis?

"Otosclerosis is defined as abnormal bone growth in the ear, eventually resulting in hearing loss. It can be an inherited disorder, resulting in abnormal hardening of bone in the middle ear and sometimes inner ear. In the middle ear, otosclerosis prevents the stapes, one of the bones in the middle ear, from vibrating correctly in response to sound waves. In the inner ear, cochlear otosclerosis causes reduced function of the hearing cells within the cochlear. Over time both physiological and anatomical changes occur, slowly leading to hearing loss. Otosclerosis is the most frequent cause of middle ear hearing loss in young adults, affecting about 10% of the population of the United States. Otosclerosis usually affects both ears, and is most commonly seen in women and girls ages 15 to 30 years old. Risks factors include pregnancy, which may trigger its onset, and a family history of hearing loss and otosclerosis."

Kokeshi - that chart sounds very poor. No wonder you have trouble hearing stuff. Here's a link to an audiogram. You wouldn't be able to hear the sounds between 0 and 80-110 dB, so lots of speech sounds. I hope you get a diagnosis and, importantly, quick and effective treatment.

audiogram

Hi christina, Thanks for that audiogram. Even in the past couple of days my hearing in my left ear has deteriorated to about the same level as my right. Which means I could probably hear a plane taking off if it was right next to me

I have an appointment tomorrow at 2pm and I'm hoping for some good news. It's weird though, I actually feel less distressed hearing nothing than I did when I could only partially hear. I guess I don't know what I'm missing so it isn't bothering me! I really don't think I would be this calm if they hadn't said it was almost likely glue ear. I do still have doubts, but then I did pre-med and probably know too much (or not enough!). I have to accept the dx with grace though

jabberwocky, thank you for that info about otosclerosis. It was one of the things I had considered, but there's no history in my family, and I turned 30 this year (maybe clutching at straws with that).

I have also experienced pressure and tinnitus, so had convinced myself it must be Meniere's Disease. Of course I would pick the dx which had the poorest prognosis!
Thanks again folks, I'll let you know how I get on tomorrow. x

Californifrau...that's great news about your neighbours, I do hope the have a positive outcome.

Californifrau, now if it had been a couple of years ago I could have added that to my list of symptoms as well...ummm no, wait I was drunk

That could've come in very handy as an excuse though! As far as I know I appear quite sober, and I know if I didn't I wouldn't be short of more than a few people letting me know!

It does sound horrendous, but thanks for your concern. Really kind of you . I'm really interested to hear how your neighbours get on, I hope you'll keep us posted.

Hi Again,

I haven't posted over the past couple of weeks becase I'm still trying to come to terms with the outcome.

I have been diagnosed with Sensorineural Deafness (or Labyrinthine failure) which it seems is permanent. They have no answers as to why this has happended, and I will probably never know. I can hear nothing at all, except occasional tinnitus which has already has me in tears of despair several times.

I've been back and forward to the consultant (who was an insensitive b8stard) and have already tried hearing aids. My hearing is non-existent, so they don't work.

I'm still reeling from all of this, I can't believe only 3 months ago I could hear fine. The lack of answers as to why this has happened is making it really difficult to accept. I just keep thinking "why?". It's more mysterious in that none of my family have any history of deafness. It feels like a part of me has died and I'm grieving.

I've found communication absolutely terrifying, I'm like a small child - confused and frightened - most of the time. I've been trying my best to lipread but sometimes I just want to give up and have it all go away.

I can't get any sense of normality at the moment. I've had to give up my next contract in the new year (I'm in film and TV) because it is just not a viable option. A deaf person on a film set is more of a hazard than anything else.

I've been put forward for a Cochlear Implant assessment but I'm worried they'll tell me that this isn't an option too. It seems every time I have a glimmer of hope it's shot down in flames. It's frightening to think of having major surgery on my head, and I'm also worrying if there's anything more sinister going on in there now. I have a brain stem response test in a couple of weeks to check if it's nerve damage. I don't know what the outcome of that will be.

Anyway, thanks of reading thus far, I think I need a little reassurance. If anyone else has gone through or knows anyone who has gone through the same (or just any kind works really) I'd be so grateful.

Many thanks kx

Hi Kokeshi - I just stumbled across your thread - have absolutely no advice or anything useful to say as I have no experience but just wanted to say that I am sending positive thoughts your way. I'm sorry this has happened to you.

hi kokeshi, i couldn't read this & not post. i'm so sorry this has happened to you, it must be absolutely terrifying. i hope you have lots of support, i'll be thinking of you. xxx

Hi kokeshi - I have conductive hearing loss, this only progressed enough to be a real problem since pregnancy, and I have now had both ears operated on with (fingers crossed) a good result.

So I think I know a little of what you are going through. I am really suprised how fast this has come on for you though, how shocking.

Re: getting help

1. think about changing your consultant - he sounds AWFUL. Where are you in the country? I have a brilliant consultant I could recommend who also just happens to be LUDICROUSLY good looking and charming (there have to be some compensations)

2. Your audiology team can really help you with day to day tips and ways to make your life easier. Have you tapped into this, if not ASK!

3. You need some emotional support, make sure you have this avaiable and use it...family, friends, others with hearing problems (eg me!), counselling etc

I think it is very likely that you can have a cochlear implant which will be a life changing and HUGE help although it won't be a perfect solution either.

Losing your hearing is far worse in its effects than most people understand. And there is a lot of prejudice out there - in my experience this also may come from people who you think of as close to you . The big things are that it affects you confidence and it is isolating.

You need to look after yourself, take control and GO OUT AND GET as much support as you can. I am almost in tears for you as I type, can't believe it could have happened. How old are your kids and do you have a supportive dp?

You will come through this experience stronger, but it will be a rocky ride for a while...think positive, the implant will have you back on track sooner than you think - and if you had been born 20 years ago this would never have been available as an option.

so sad for you..have you tried contacting the RNID

xxx

kokeshi, I have Been There and Done That.

I'm sorry I don't have much time to post at the moment, but I wanted to say 2 things:

1. Firstly, this is a nightmare time for you, but what you need to remember is that this is the worst time. It will never again be as bad as it is now. You have a huge amount of adjusting to do and it's hard work but you will get your life back.

I repeat: this is the worst bit - it all gets better from here.

1. Secondly, you're not alone. There is lots of help, advice and technology out there; you just need to access it. This however can be hard if you're a beginner, especially as ENT surgeons are clueless. You need an audiological physician for a start - they can put you in touch with the right people. Also, have a look at the RNID website here for strategies and ideas.

Will leave it at that as I must run, but feel free to ask questions.

My heart goes out to you - acquired deafness is a horrible thing to have to deal with - but it really is do-able and you will get there. Promise!

Oops, lots of cross posting while I was typing that in installments! I agree with what the others have said. Lots of good advice there.

Hi folks,

Thanks you all so much for your posts, I have just came in the door...I've been up at the hospital seeing my Dad who was taken into hospital on Friday with a blood clot on his lung and pneumonia. This weekend has reinforced how much my life has changed with this deafness. I want to be there for my mum, but I was in tears last night at the thought of being in the company of my extended family at visiting time. I just can't handle more than about 3 people at a time.

My DP has been fantastic but it's very frustrating for everyone. Not only have I lost my hearing but my loved ones have lost their voice. I'm usually the strong one and I hate relying on others.

The consultant I have was through a self-referral from A&E. I knew as my hearing was deteriorating so quickly that glues ear didn't seem right (I have pre-med training). I kept going back to my GPs but 4 different docs all diagnosed the same thing. However, I do have another appointment with a lady ENT consultant in my own town, who is apparently very very nice. I think the final straw with the bloke came when I asked if there were no other tests he could do..."Well yes, we can study your inner ear under an electron microscope, but that would be post-mortem.... I'm in the West of Scotland by the way.

It's great to know there are people who have gone through similar experiences, I really didn't give enough thought to how precious my hearing was. It's so bizarre to just not hear, not even my own voice.

For my own part, as soon as I got the diagnosis I was straight on to the internet and I emailed every deaf charity and organisation I could find. I was pretty desperate. I'm still quite pissed off that the consultant just packed my off that day without a phone number, web address or even a leaflet. I did tell him that and he said "Well, I was only allocated a 15 minute slot with you and I wasn't expecting that result. I ended up spending 45 minutes with you and I didn't want that either"...

I've been in contact with Link who provide a residential week long course for people who have suffered Acquired Profound Hearing Loss but it won't be until next April and they have to apply for funding for me. The lady I have been in contact with has been fantastic getting things sent out to me.

So I guess now it's about preparing for the Cochlear Implant Assessment. It does hit me like a ton of bricks at odd moments during each day. I guess this is just a whole new learning curve for me and I have to accept whatever comes my way.

Again, thanks so much for all your supportive messages...it really gives me strength to know that there are people out there who are so kind.

kx

Could I ask what coping strategies that people with hearing loss use to explain to others? I think because this has happened so suddenly and I've had no time to digest it myself, I'm trying to function as a "hearing" person. I feel like it would take so much energy every time I meet someone new to tell them I can't hear. As I said, I'm not even comfortable with it myself at the moment, so I don't know how to make others feel at ease when trying to communicate with me. It's just so tempting to hide away and not bother, but that would just increase my isolation. They can't tell by looking at me, and I have perfect speech so I obviously just look rude when I don't anwer someone...

I really appreciate any support, I have no experience of this and don't know anyone who has a similar problem.

Thanks again, kx

Kokeshi - read this entire thread and each time I read a new post by I was ready to post a bit of support about my DH and his family, some of whom suffer from hearing difficulties - but each time I would read another post from you updating on the situation until there was not really a lot of supoprt I could offer as my experience does not go that far.

My DH is completely deaf in his left ear. And his DM has a perferated ear drum and has just regained some degree of her hearing after 2 years of tests and finally a gromit, following - like you a head cold - but she is still with hearing aids. Having hearing aids (the large behind the ear type) means people can tell she has a condition which affects her communication.

DH however refuses to wehre one and like yourself has no outward sign of a problem. We have developed habits for coping, and although the situation is not as severe as yours perhaps they can help your DP to help you.

In restsuarants or other out and about places face the main room and allow DP to order for you - or at least be prepared in case the waiter asks questions of your choices.

Allow DP to answer the phone and where ever possible do all the talking.

Ask DP to walk on your best side so you can still communicate while out.

Make sure you and DP have told as many of your friends and family as possible about your condition so there are no misunderstandings.

(When DH and I first started dating our first big row was because he had'nt told me of his condition - because he felt ashamed or vain I guess - and we had ordered a takeaway but I had been stood the wrong side of him so he had not properly heard me ask him something and was not expecting what we ended up with)

Finally with regards to work - are you freelance?? I work in an Occupational Health Dept, and a lot of my focus is on helping people in the work place who have conditions which may otherwise render them unable to work. There is loads of technology, as well as organisations out there who can provide you with support and advice on working with your condition rather than just feeling like you are coping.

All the best, I hope I have been of the tiniest bit of help or support if nothing else.

Also did'nt see anything else about your dad on the thread - hope things are okay, my thoughts are with you! (())

Hi kokeshi,so sorry to hear of your problems, my DH is profoundly Deaf, he was Deafened at 6wks of age by an overdose of Neomycin ,the antibiotic,he is currently being evaluated for cochlear implants as he has always had analogue hearing aids and they just changed him to digital [without any support at all] and he has had an awful time adjusting to them. My Dh uses lip reading to help him and relies on this quite a lot,dont give up on your career, because of the disability act all companies have to accomocate you at your job and supply any aids you may need to facillitate this, the help is out there you just have to know its available.. thinking of you xx

Thanks for your responses guys, it really helps. I think for me there is still a degree of denial - nay defiance - that I should have to explain myself to everyone I meet. I know it's just foolish though to go around trying to conduct myself normally when I so obviously stick out like a sore thumb as soon as any complex interaction occurs. Yes I guess it's pride and just difficulty accepting what has happened.

I have told some of my friends, it takes a lot off effort to admit this each time. My heart sinks and it becomes that bit more real every time I have to see it in black and white. I really don't want pity and I find it hard to know how to strike that balance.

As for freelancing, yes I do, but realistically each project is bound by severe budget restraints, especially many small independent films. If I worked for MGM studios (I wish!), it would be a different matter but many of these production companies only just cover costs themselves. With that and the amount of competition for each job, I'm under no illusions that I would be favoured over a hearing person. One of my friends (a previously successful actress) was brave and publicly admitted on a TV programme that she has MS. Her phone hasn't rung since. Unfortunately that's the way of it, disability discrimination or not. To be honest I know myself I could just not do my particular role without hearing.

I really do appreciate all the responses, I'm feeling like a fish out of water. I'm usually so busy and when I have down times they seems to occur when I have little to occupy myself with. I guess it's also about learning to feel comfortable in your own skin. Admittedly something I've never been good at!

I will use each and every one of your suggestions and carry your kind thoughts with me, thanks for continuing to look in.

Oh my dad is still in hospital, on IV Augmentin and oxygen. He's in quite a bit of pain through the night. We're going to see him later today.

I was wondering about anyone who had Cochlear Implant experience?

Thanks again x

Oh kokeshi I have just caught up with this thread. I'm so sorry that your diagnonsis is this serious.

I have always found my nhs audiology dept great for providing state of the art digital aids etc but rubbish at providing any support or practical 'how to live your deaf life' information.

I've got my fingers crossed for you regarding your course in April. Until then try going to your local deaf group because they will have all the local contacts that can help you.

Stay strong xx

kokeshi, does your lady ENT consultant have the initials MS, by any chance?

If so, she is lovely, and is very involved with cochlear implants, so will be able to tell you there and then if you will be suitable.

Hi, at risk of outing myself totally here (which I guess from the amount of information I've already given is quite likely) the lady consultant I called a Mrs C, and she is very close to me in proximity. I will have the Cochlear Implant assessment in Kilmarnock and I'm not sure if I get transferred to another consultant for that? The other guy's initials were MS as it happens.

I don't know if there is a deaf group as such near me, but I have been advised to stay away from Deaf (with a capital D) groups as they're all BSL users. Some have also said they are very against Cochlear Implants as they will see the destruction of the "Deaf Community". At the risk of sounding harsh, I really couldn't be doing with any of that. I wasn't born deaf and have no aspirations to remain in silence forever. It's really unpleasant. However I guess I can kind of understand what they mean???

Yes I agree the audiologist was lovely when I went to see her, much much nicer than the consultant. She gave me her mobile number if I had any problems with the hearing aid, but to be honest it was so painful and uncomfortable wearing it that it's remained in it's box. It felt like someone was taking a jackhammer to my skull every time a "noise" occurred, which just shows how loud the sound was if the vibration did that. In fact, I was the only one in the room who couldn't hear it. So, I haven't bothered her.

I'm still wondering about the enigma that is a Cochlear Implant. I've researched as much as possible on the net, but know no-one personally who's had one. Or would they give you two? To my mind two would work better, surround sound like your ears, but might be too costly for the NHS. I think they come in at around £30,000?

ah, well don't know Mrs C! I do know one of the ENT consultants in Kilmarnock, though- MS- she's lovely- I had some concerns about my hearing, and she squeezed me in at a clinic same day (I do work at the hospital, though, so i was on the spot).

btw, i think there is a world of difference between people who are born deaf, and therefore don't know anything else, and those with acquired deafness. I can understand those in the (lifelong) deaf community being against implants, but if my hearing deteriorated that much, I'd go for it, I think! I have a relatively minor loss in one ear- probably a diving injury, and it upsets me when dd and dh keep talking as they walk out of the room- they KNOW I can't hear them!

National Cochlear Implant Users Association

Try this website _ I thought it looked promising - here are the details for Scottish user groups taken from that site:

ECIUG: Edinburgh Cochlear Implant Group

A group has been formed to support those cochlear implant users who live in the East of Scotland. They are organising social events and have a newsletter which is available both as hard copy and soft for those who cannot surf the Web

Anyone interested should contact:
Donald Macleod
26 Preston Crescent
Inverkeithing
Fife
KY11 1DR
Email: [email protected]

or:
Nicola Latto
35 Overton Terrace
East Calder
West Lothian

I hope your dad has improved, and I hope you are having a better day today.

In terms of telling people that you can't hear - I had partial hearing loss and found it best NOT to tell people because of the levels of prejudice I experienced...but you probably need to tell people if you have profound hearing loss. If I were you I would tell them at the same time that you expect it to be a temporary problem as a cochlear implant will sort you out quite soon. A temporary problem will attract less prejudice from people and therefore cause less social isolation.

I think you are wise to be talking to people who have late onset deafness rather than deafness from birth as I think the two are very different The groups of the latter can be very politicised - which is probably not what you need right now.

I would also make a list of things that this new development in my life will allow me to do that are positive...eg spend more time with my kids/family, have time to do those hobbies I always wanted to try or didn't have enough time for, try out a different job etc etc. There will be some positives in the situation so don't ignore them.

Keep posting!
mousie

tissy my dp did this kind of thing...why is it that even those who love you don't make the effort?