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.

Oh gosh no! Not everyone at deaf club can or does use sign language.

They are just normal everyday people who happen to be deaf .There might be one or two rather politcal people there but isnt there in any walk of life?

If you go once you might like it or at least pick up some useful information. And if you dont like it then you never need to go again

Hi again kokeshi

Just thought I'd give you my 2p about dealing with other people.

IME if you try to pass yourself off as hearing, it will only make things worse. People don't assume a young person is deaf, so they'll make other assumptions first, eg: You are thick, forgetful, rude, uncaring... you get the picture.

The trick is to be upfront but positive. Here are some ideas:

For encounters with strangers, eg in a shop:

1. Develop a short statement and give it straightaway, before you get into difficulties. Mine is "Hello, I have a question. I'm deaf and I lipread."
2. Keep a pad of paper and pen in your bag. If you get bogged down, get them to write stuff down. This is especially good for numbers and names.

For friends and family:

1. They'll be upset about your hearing loss. Resist the temptation to minimise it to avoid upsetting them further. They must know how deaf you are so they can interact with you appropriately.
2. Hand out those sheets of "how to communicate with a deaf person" to everyone and be very strict that they follow the guidelines. Remember, if they can't communicate with you, it is their problem, not yours.

For colleagues:
More tricky because you need to be seen to be coping. I would stress to colleagues that this is a transient stage. You've gone suddenly deaf and you haven't had a chance to learn to lipread yet. You're probably going to have a CI and this will make a huge difference. Suggest to them some strategies for the meantime, eg, to discuss matters by email rather than in meetings.

Have a look at the Access to Work info online and make sure you know what you're entitled to- might be more than you think.

My most important tip for work is that if you take a matter-of-fact, problem-solving attitude you'll find that this rubs off on those around you.

Finally (you'll be relieved to hear), a general point. Don't ever apologise for being deaf. If you can't hear someone, it's not due to laziness or lack of moral fibre on your part - you've nothing to apologise for. Don't say, "I'm sorry, I'm deaf", say "I'm deaf, could you speak more slowly please?"

Going to stop there as I see this is a very big 2p, don't want to bore you into a coma. Will write more about CI soon.

I guess I can only try the deaf clubs though eh? It was actually someone from the RNID who said that Deaf Clubs are mostly BSL users. I also have been referred to a Sensory Impairment Social Worker (so many new people to deal with) who told me that BSL isn't probably something I should worry about learning at this stage. She said that it's a huge undertaking, and anyway, who would I sign with? I live in the hearing world and have been a member of that for 30 years...it's not going to change. I guess I can see her point.

I did have a look at the NADP website when I was first diagnosed (I was seriously up all night) and although I did get a reply from the chairman it was the sort of well, buck up and get on with it. They have lots of useful information though and I will get back to them.

I'm hoping to start a lipreading class on Friday, which should introduce me to new people. I'm a little apprehensive but I'm sure they'll be accommodating. Just out of interest has anyone else been to a lipreading class, or is it just somethings you pick up in time? Because I hear nothing it's very difficult to decipher some words especially b,p,m and -ing worgs. Actually any sound that's formed at the back of the mouth is indistinguishable. But hey ho, I'll persevere.

I really bizarre thing happened tonight. An ex-P came to the door, after 2 and a half years of not speaking to me and started to question my availability. It's was so weird, I was so shocked I just blurted out that I'd recently become deaf. I've now found a great way to get rid of unwanted guests on the doorstep Annoying because I never got the reason for the visit.

Thanks again guys...

PS to hear your Dad is not well, hope the antibiotics and oxygen sort him out quickly.

Thanks for that welliemum, that's great advice. I have been finding myself apologising because I do feel awkward about it. But you're right, it is up to the individual to communicate with me if I explain. I have my trusty notebook with me at all times. Funny, I was thinking that I could, in the future, use it to write something about my experience.

My family are understandably upset but have been great for the most part. I'm sure that once I feel more comfortable with myself I'll be able to stand up for myself. I'm not a wall flower but I've found it easier to be passive recently.

Thank you welliemum, all your posts make so much sense! Thanks for taking the time to sahre your experience with me.

kx

Oops sorry for the typos I usually preview. My Dad is improving I think, he's still on the IV antibiotics and he went for another scan today. He still has a blood clot on his lung so they will keep him in for a bit yet. I finally realised today how alike my Dad and I are. He was laughing and joking and pretending things were fine. I never saw it before!

Kokeshi, only just seen this. I have absolutely no experience but couldn't not post. So sorry you're having to go through this. An acquaintance of mine has been deaf since birth but never learned to sign, not sure why, but I think it was because her parents wanted her to be able to cope in the hearing world. I have to say that so long as people face her when speaking to her, she rarely has to ask anyone to repeat what they say and I've never seen her ask anyone to write things down, so I guess it is possible, though obviously she's been practicing for years!
I think you're being incredibly strong.

Thank you chipmonkey...I like your new incarnation! Actually, I've drawn a lot of strength from the kind posters on mumsnet, so I can't really take much credit for that. So good of you to think of me.

Better head off to bed now...good night and many thanks kx

Not all deaf people use BSL. There was a 'fashion' to get rid of it and make deaf people speak and lipread instead. To some extent I think that Deaf (with a capital D) activism is an understandable reaction to that.

Also I think it depends on your age and what health authority you live under as to what treatment/help will be deemed suitable for you.

ie at the start of this thread christinathe astonishing told me that her ds had had testing on the nhs to find the cause of his deaness ,but we have never been offered it (I'm going to ask for it now ,thanks christina!).
Also my ds is deaf but is not allowed to sign. I desperately wanted him to learn BSL but it is refused in my area (south of England).He will be allowed to learn as an adult however.
Its the current fashion to include deaf kids in mainstream schools. I am a bit ambivalent about that but again I have no choice.
He has had help with lipreading when he was very young ,only about 6x1 hours appts. It was very basic and pretty much what I was already doing with him at home.Its like anything if you practice you improve.

I dont think you have to choose to be soley in the hearing world or Deaf community. You can keep a foot in both camps anmd try to get the best of both worlds

Hi Kokeshi - so sorry to hear how serious your hearing loss is. I hope the implant assessment will be quick and that you'll get one soon. I think they only do one CI on the NHS. Two CIs are getting a bit more common than just experimental but I only know of a couple of children in the UK who have two and a just a handful of others in the USA. The Portland Hospital (private) do bilaterals, the whole thing costs ~55K (assessment, op, rehabilitation).

It takes a while to adjust to hearing aids. They may need re-tuning or maybe starting at a lower volume if the sounds appear just too loud for you. Don't give up on them yet. You have the huge advantage (over a born-deaf child) of knowing what language is about and you can make good use of them. But having them adjusted properly is important. I used to listen to my son's aids myself (with a sthetoscope-like tube, available from Connevans-they have a website), maybe your DH could do this for you, just to check they are working OK.

I have tried BSL classes but I have to say I gave up. It's a complete new language, different structure, syntax etc, I found it impossible to learn without someone to practise with.

We have all learnt the finger-spelling alphabet (this one takes only about 10 minutes to master) and use this occasionally with DS when we only need a word or two, or sometimes we only fingerspell the first 2-3 letters and then he gets the rest. This is useful in background noise or in the dark when he can't have the help of lipreading. More handy than a notepad too.

DS is quite good at lipreading but when his aids don't help him much (e.g. glue ear to worsen his already profound deafness) we realise that he really can't rely only on it.

I used to get very worked up about d/Deaf politics but I really don't care much about it all now. DS lives in a hearing world and as parents we'll just have to make the decisions for him until he's old enough to make them himself. He can always learn BSL (maybe he's got more talent at this than me) but he can't learn spoken language if not exposed to it in the first few years of his life. You can't turn back time.

It must be such a bewildering time for you now. One of the best pieces of advice I received in the early days with my DS was not to make any major life changes in the heat of the moment. I was considering giving up work - to have more time for his problems. I think that kept some normality in our lives and DS's deafness didn't become the centre of it.

Please keep us posted on what's happening.

I hope your Dad gets better soon.

Thanks for taking the time to write all that, it's so helpful to have other's experiences to refer to.

I'm going for Reiki tomorrow...started a thread on other subjects but have had no response as yet. Hey you never know right?

I'll respond in more detail tomorrow, well, I guess later on today!

Goodnight kx

Morning.

I've been thinking a lot about this cochlear implant assessment and although it sounds hopeful I still have my doubts.

I guess I don't want to get my hopes up in case they find out I'm not suitable so I wanted to ask about the criteria which you must meet to qualify for one.

I know that they implant people who have suffered my type of hearing loss (sensorineural) and have memory of sound/speech. Any ideas as to why I wouldn't be suitable? I was wondering if they had psychological criteria, as well as anatomical/physiological.

I wonder if LGJ is around? Or anyone's childrean been implanted? Thanks, I really appreciate it. kx

Just noticed this thread. Going back to jabberwocky's post re otosclerosis, thought I would post this experience for you kokeshi.

After my first son was born when I was in my early thirties, I returned to work. It became obvious to colleagues that I wasn't always hearing them (whilst home on mat leave, I had noticed a few problems hearing people on the phone etc). Anyhow, initially I was diagnosed as having glue ear (even got to stage of having day appointment at hospital and both ears being cut open internally, before consultant decided that it wasn't glue ear!), then sensorineural deafness was suggested, but eventually (after a further pregnancy and various tests/appointments) they settled on otosclerosis (most likely triggered by the pregnancies). Both ears are affected and I also have associated tinnitus.

So, just wanted to say, if you still have any doubts about your diagnosis, keep asking questions of your consultant.

Regarding anatomical criteria - I think there'd be few things that would make it impossible, e.g. not having auditory nerves (obvisouly not your case). I know of one boy who had an absent nerve on one side and a v thin one on the other and he still qualified for a CI (on the v thin side). Big gamble, but it works. Even in cases of severe cochlea malformations (again, not your case) CIs can still be done. They used to do mostly Med-El for this but perhaps the other two devices are done nowadays too. You get the CT and MRI scans so the surgeon can check for this, as well as the track of the facial nerve so it doesn't get cut during the op. Central deafness - but I don't know much about it.

Psychological - perhaps if you were likely not to use it, not your case. Children with additional disabilities also get implanted, so ability to use it (phsyically/technically) isn't the main criterion. They assess that you have realistic expectations from the CI, e.g. in our case that we don't expect DS to hear on the telephone as soon as he's switched on, or become a violonist or opera singer (although deaf implanted children do get enjoyment from music).

You might find that the main barrier is one of cost, your health authority may only fund X number a year, so the funding site may take a few months to come through. But you might be fast-tracked, e.g. children deafened by meningitis are (as the area would become inoperable as it hardens with time).

butterflymum have you gone for stapedectomy?

Hi there, kokeshi! I hope I'm not butting in, as I don't really know about deafness, but I do read about dogs for deaf people. Hearing Dogs is a charity which provides people with a fully trained dog to do quite a lot of hearing duties. I can try and find out more, and will post if I come across more information. I hope you are bearing up, you brave brave woman.

Hi there, kokeshi! I hope I'm not butting in, as I don't really know about deafness, but I do read about dogs for deaf people. Hearing Dogs is a charity which provides people with a fully trained dog to do quite a lot of hearing duties. I can try and find out more, and will post if I come across more information. I hope you are bearing up, you brave brave woman.

NOt sure I can really offer any advice, but sending you hugs. I can't imagine what it must be like to go through what you are and you are dealing with it all so bravely.

I am hearing impaired. My loss is moderate on average depending on frequency. I need subtitled for tv, can't cope with mroe than two or three people and depend heavily on lipreading. I was born like this, so picked up lipreading naturally. Good luck wiht the classes, it is possible to communicate entirely with lipreading. I have met quite a few deaf people through my father who has level 2 BSL I think. BSL is like learning a whole new language, the grammar is very different to spoken english. It might be something worth considering in the future.

Hi again folks, thanks for all your kind words.

So I went to Reiki today - what a fantastic experience. I felt so relaxed and peaceful afterwards. I'm definitely going to go back again.

Christina - thanks for answering those questions about the CI you've been really really helpful. No-one has told me anything specific, I think they didn't want to overload me with info but it's been on my mind a lot. It does sound quite hopeful that I may be suitable, I guess we have to wait for the results of the tests.

Hi MrsOhhu, nice to see you! Thanks for offering. A dog was something I did actually wonder if I'd be offered but no-one has mentioned it so far. I would be very grateful if you would look for some info for me.

Thanks also butterflymum and kelly1978 for sharing your own experiences. I've learned so mcu recently which can only be a good thing. I have 2 appointments on Friday with different ENT consultants. I'm hoping my new lady ENT will be slightly less abrasive!

I hope you're all well too. kx

Here's the link for Hearing dogs: \www.hearingdogs.org.uk/dogs-partnerships.php\here!

this

mousiemousie, no, discussed this a year or two back with my consultant, but decided against same. My loss is quite bad in both ears and he felt that if for any reason the op didn't go well, I would be worse off because of the other ear. That said, my sister in Scotland had it done at the start of the Summer and it seems to have been a success for her. Have you had it done or are you considering it?

Ooops, forgot to say, hope your appointments go well on Friday, kokeshi.

Best of luck tomorrow, kokeshi!