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.

butterflymum, is your hearing bad enough for you to need hearing aids?

I have had stapedectomies on both ears now and have normal hearing, how fab is that? It took me a long time to decide about having the ops though.

Hi mousiemousie.

That is fantastic that both were a success.

I have hearing aids for both ears, albeit as I am a SAHM at present, I don't need to use them all the time (at home on my own most of day, use subs for watching TV and hubby and the boys usually talk fairly loud for me to hear . Doing a part-time college course one morning per week though and having a few problems with acoustics in the room we are using there. Started in September and they are still trying to sort out a suitable portable loop for me to use my T switch with! I am OK hearing lecturer, but having difficulty with hearing the others on the course. They have promised to sort it out soon though.

Thanks for your wishes for tomorrow folks x

Hope things went well for you today koreshi!

Butterflymum I felt I needed the op for my work - if I had been a SAHM I wouldn't have opted for the op as my big problems were at work not at home...but I would advise you to think about it as the payoff is so fantastic!

I think your consultant seems quite cautious...I would find a consultant who does LOTS of these operations and ask his/her advice before you decide the op is not for you as its a life changing operation. Surgeons who do lots of these have a much smaller failure rate, and most failures can be sorted by a second op.

mousie xxx

Kokeshi my son has a severe hearing loss but hearing aids and a radio aid work well for him so that is where we are at. If you want more info on CI there is an article in the most recent magazine from the national deaf children's society which interviews a family I know where the daughter has recently had the op and the son is waiting for it. You may find it interesting, i'm sure if you email NDCS and explain why you want it they could get you a copy.

How did it go kokeshi?

Hi folks...ugh what a long day! Here goes, bear with me:

I saw lady ENT doc (Mrs C) this morning and she spent quite a bit of time with me taking my history, asking questions and such like. She did say that she was sorry that some of the things Mr S told me initially were in fact true. She totally understood though that the manner in which I was given this life-changing news was not appropriate. She will support my application for funding to LINK foundation for deafened people and the next stage is a cochlear implant.
She also wants me to have more scans done to check there's nothing sinister going on.

This type of Sudden Profound Sensorineural deafness is apparently very very rare, she has only seen 3 other people in her 12 years as a consultant with the same problem. My bloodwork came back and I have tested negative for lyme disease and negative for anti-cochlear antibodies. So, the mystery deepens. It seems so incredible that one of your senses can just stop working with no apparent cause. It is making it really hard to accept actually, and I feel I'm just being dragged along with all of this. I think I've realised that there's very little that they can do for me now, my hearing has gone. She did say that I could go back to see her just to chat as there are no hearing therapists in this area...or in fact anywhere in Scotland it seems.

My next appointemt with Mr S was equally as final in terms of what he can do for me. They are pretty sure that this is not reversible. What did surprise me was that he actually said that he felt really sad that he couldn't help me and he had to be the one to deliver this news. In his own words "I'm as much use to you as a chocolate fireguard!". He then looked like he was about to cry and hugged me. How bizarre I thought! But nice all the same. He's also filling in my application for a cochlear implant.

I've now been "escalated" to the senior audiologist and had an ABR. It was to prove I have no hearing! It means I don't have to go back for the brain stem test next week as they now know my hearing is non-existent.

However, she reprogrammed the hearing aid, I couldn't wear it as it was so noisy and made me feel dizzy. Plus the whole of the street could hear it except me! I have to persevere with it because apparently you have to stimulate the ear otherwise it "forgets" sounds. Once I get used to this one, they'll give me a second one. There's no way they'll do an implant until you've exhausted all the hearing aid options. So it'll be a few months yet before the implant possibly happens. Until then, as they've told me, I have to get used to the fact I am now prfoundly deaf. I know myself that it hasn't completely sunk in yet and it will take some time to adjust to this.

Meanwhile my Dad was discharged from hospital at lunch-time today, and had to call an ambulance an hour later as he was in so much pain. They've re-admitted him to the ward and he's back on IV antibiotics and stronger painkillers. Poor thing, he really isn't very vocal about how he's feeling (physically or otherwise) and I do think he was discharged too early.

So it's off to yet another hospital tomorrow to see how he's doing. I guess I'd better go and get some sleep now as I'm completely whacked. Thanks for being there guys.

kx

Phew Kokeshi, what a day. Hope you're getting some rest now. Sorry to hear about your Dad having to bounce straight back in.

Your appointments sound to me like good news, ie you're talking to people who have a bit more of a grasp of what this means to you, and I think that's a good thing, even if they're feeling a bit helpless.

Hearing aids: yes, they take a lot of getting used to, as you can see here.

I've had a fair few and each time it's been a shock putting a new one in. It can be quite hard (even if you're an experienced HA user) to know whether a new aid is wrongly set up or just new.

Anyway, stick with it and you might be pleasantly surprised. I have really terrible hearing (worse than yours) and I wear a hearing aid. It distorts everything such that I can't really recognise sounds, but I get a lot of useful info from it nevertheless.

A word of caution: I had the full CI workup in the UK and then sat on the waiting list for ages, despite being high priority, because the funding was completely inadequate. In the end I emigrated and 2 countries later, I'm finally in the countdown to surgery!

I don't mean to discourage you by saying that it might take a bit longer than everyone thinks - just be aware of this and don't pin all hopes on having the op right away. Then if it does happen it'll be a nice surprise.

I see you're going to have lipreading classes and I wanted to cheer when I read that, because I think that's the single biggest help you could have right now. It will make such a HUGE difference when you can lipread well.

CI, as you know, doesn't give you back normal hearing - it's intended to complement lipreading - so, think of it as preparation time for your implant.

Oh, and as Cristina mentioned, it's very useful to learn to fingerspell and teach family/friends. We do that and works well.

What else? oh, yes, someone mentioned a CI users' group - great idea. You can meet people with an implant and hear about their experiences. Where I used to live (in the south), the CI group had regular meetings with speakers on various topics, and there was a note taker typing what everyone said which was projected onto a big screen, so you could just read all the discussions off the screen. It was great.

Sorry, have written another novel, well done if you've got this far!

Hi again...I just got up to get a drink and thought I would check. Hi welliemum and is that you californifrau!? I think I should be getting myself a christmassy name...have to jump right in there methinks!

welliemum...I didn't realise you'd gone down the CI route as far as that. Do you mind me asking the cause of your hearing loss? You have given me some absolutely invaluable advice and I really want to thank you for that.

I do hope you get some good news soon. I think it's a lot to process for me and I know I don't want to jump in head first without knowing everything there is to know about it. I think at least 6 months will be needed for me to really get understand the implications of what has happened. I also want to try some other "alternative" things. I'm not pinning my hopes on anything kookie or "way out there". I know I can have a healthier lifestyle and it's probably a good time for me to take stock.

I think I was also very resentful of the Hearing Aids...like some sort of badge to say that I don't work properly. I know how ignorant people are, myself included. If I can get some useful information, especially environmental (to stop me getting run over by a bus) then that's great!

Anyway, thanks again for everything. It's something I can come back to whenever I need reminded that it's not the end if my life...merely a new chapter.

night night x

Very pleased to hear that the hospital appointment was an improvment on last time and that you are feeling more positive

Hi Kokeshi - I am so, so sorry that your hearing loss is so severe and definitive. I hope you'll get some good use from the hearing aids and that the CI money & op come through quickly.

Here's a link to various equipment that may help you (vibrating alarm clocks etc) equipment , see their catalogue. Many TV programmes are subtitled nowadays. For live broadcasts the subtitling is done phonetically and there can be some funny errors.

Taking stock of your general health sounds like a good step too (I'm paranoid about DS's eyesight). When you try alternative therapies at least you won't hear the awful muzak they tend to have in the background!

Thank you for updating us. Please feel free to email me at any time: cristina at augood dot co dot uk. I really feel for you. As you say, life goes on and you will get through this and learn to live with it. How are your kids and partner dealing with it?

Morning,

Thanks again for that link Christina, the Social Work Dept have been quite good at getting the basics...I have a textphone (still getting to grips with that!) and the vibrating alarm clock and a light up doorbell. They're coming back to fit a flashing smoke alarm in every room. We have fun playing with all the gadgets at the same time...kinda like being at a rave!! Not so good if you're photophobic

Thanks so much for giving me your email address. It's been an absolute lifeline for me to speak to those with experience. I was resentful that I'd so little help from professionals, but now I see my case is pretty exceptional...thay have no precedents. Hopefully they've had a bit of eduction too!

My family are coping OK I think. It's hard when someone shouts on me and I don't respond. It takes a lot of getting used to for everyone else too. I read somewhere that loved ones of deaf people find they've lost their voice. Quite apt I thought. We've all been pre-occupied by my dad being in hospital, which has been a good thing in that it takes the spotlight off me IYSWIM. I'm being forced to interact with others when I may be tempted to isolate myself.

Oh Cristina...about the eyesight. I've been having this irrational thought that I may go blind as well. It's terrifying. Being deaf is bad enough but deaf and blind? I think sometimes you can't help being morbid and possibly even fatalistic when situations and outcomes don't adhere to what you believe to be possible.

I've had a lovely email from someone who had read my initial email plea for help. She is a hearing therapist and deaf herself, and has also given me a fantastic insight into life after deafness. Amazingly she has offered to meet me today as she's up in Glasgow on business. Daily I've been given hope and encouragement from such kind and thoughtful people...strangers to me with no ulterior motive. At the risk of sounding corny, it really does restore faith in humanity.

This is really helping too, thanks again kx

Hi kokeshi, sorry, a bit of a delay getting back to you.

I don't in the least mind discussing the cause of my deafness - except that no-one knows. I had a lot of tests and all results were negative. In fact, I put a stop to the testing because once the treatable causes had been excluded, I felt there wasn't much point.

Good luck with trying alternative therapies - my feeling is that in a situation like this, you need to be a bit creative about finding things that work for you - and then whatever works, do it.

FWIW, I think you're coping amazingly well. If you're feeling desperate at times, that's a perfectly logical response to a really hard situation. I've talked to many deafened people over the years, and the fact that you've been posting here, asking questions and wanting to learn, suggests to me that you'll get on top of this sooner rather than later.

When my hearing went it was ye oldene dayes before the internet. I didn't know anyone else in the same boat and the health professionals I saw kept telling me how unusual I was, so I felt very alone.

I've since discovered that although most people aren't as deaf as me, anyone losing their hearing is battling with similar problems, and hearing loss is really common. So there's a big community out there to tap into.

Must run, but here's my email too:
wellliemum at hotmail dot com

More later!

'lo again

welliemum, thanks for continuing to post. I know being able to exchange ideas with those who have been in my position has really kept me going.

Can I ask if you have the same diagnosis as me (profound sensorineural deafness)? If so, how long did your hearing take to go? Most of the people I've "spoken" to have experienced gradual hearing loss, over a good number of years. I think because I had no transition into it, and I was unaware of the outcome, it's making it harder to process.

I had a lovely evening with the lady who is a hearing therapist. It was my first meeting with a deafened person, and my first social outing since my hearing loss. So quite a big deal! She was fantastic, very assertive about her deafness. We went into a cafe, then for dinner and she explained to the staff as soon as she arrived what she needed them to do for her (switch on the loop, speak slowly and clearly etc). Amazing.

She's also written a book called "Impairment to Empowerment" which she gave me a copy of...so kind.

So, things are progressing on a daily basis. Today I'm going for a counselling session to Deaf Connections, and then a lipreading class in the evening. The lipreading teacher is deaf himself and has emailed me to give me some great advice.

Thanks folks.

Hi kokeshi
I am thinking of you, was just reading all the threads and becomming upset myself as I too was diagnosed with hearing difficulties recently! I saw a consultant who told me I had nerve damage and basically blame my parents!
I am 30 and have no idea how bad it will get and it is so upsetting to think it could go. I feel for you as I still can hear but have no idea for how long.
My consultant was also not so good as he was straight to the point with no real compassion and spoke to me with his hand over his mouth so I could hardly make out what he said. He said i could be referred for aids but I cant have discreet ones unless I go private or get funding through work. I am going to try and get a second opinion though as I felt very let down by the whole service. You are told such sad news and expeceted to deal with it there and then without any sympathy or reassurance.
I am thinking of you and hope all goes well for you.

Hi kokeshi
I am thinking of you, was just reading all the threads and becomming upset myself as I too was diagnosed with hearing difficulties recently! I saw a consultant who told me I had nerve damage and basically blame my parents!
I am 30 and have no idea how bad it will get and it is so upsetting to think it could go. I feel for you as I still can hear but have no idea for how long.
My consultant was also not so good as he was straight to the point with no real compassion and spoke to me with his hand over his mouth so I could hardly make out what he said. He said i could be referred for aids but I cant have discreet ones unless I go private or get funding through work. I am going to try and get a second opinion though as I felt very let down by the whole service. You are told such sad news and expeceted to deal with it there and then without any sympathy or reassurance.
I am thinking of you and hope all goes well for you.

Hi jenwa, sorry to see you're going through a similar experience. FWIW, the more people I meet, the more it seems our experience of ENT and audiology is very common. They are not equipped to deal unless they can give you a pill or cut you open.

The lipreading class I went to tonight was very enlightening. First time in a room with others like me. I've had to get used to this very quickly...2 weeks ago I was adamant that I wasn't going to do hearing aids. Well, I'm wearing one now. For my hearing loss, I have to wear behind the ear aids because discreet ones aren't powerful enough. I've been told this wouldn't change if I went private.

The biggest prob I have at the moment is that the ear mould doesn't seems to fit right...which leads to loud whistling that everyone else can hear. It's very distressing actually. I don't need another problem to add to my collection!
I'm going to go back to audiology tomorrow and ask if they can do something about it.

Do you mind me asking how severe your hearing loss is at the moment? Is it sensori-neural deafness you have as well? Please join me here, if you need any advice. These ladies have been absolutely amazing.

Keep well,

kx

Jenwa,
Just wanted to add my thoughts. I've been recently diagnosed with otosclerosis and similarily to you, the consultant I saw just made the diagnosis, told me I shouldn't have the op that can help, at the moment (as I'm planning more children and pregnancy makes it worse apparently) then told me to get hearing aids. I wasn't offered any follow up consult, or given much opportunity to ask questions (of which I have loads!!) He also spoke very quietly, and often facing away from me. I think you should definately try to see someone else, and maybe contact the RNID for some support?

Kokeshi, sorry to hijack your thread, I have been following it and really feel for your situation also. It is difficult to come to terms with hearing loss, especially when it has been so sudden like yours. I am making the mistake at the moment of trying not to think about it, but then when I do feeling overwhelmed.

No problem pegotty, the more the merrier! Please do come and post on here. I would advise any one who's going through similar to seek support from others. It's so easy to hide away and isolate yourself.

Every time I wake I am reminded of what's happened to me and every time I go to do something that used to be simple, like go shopping, I dread it.

However, every hard of hearing, deaf or deafened person I've come in contact with over the past few weeks has given me hope for the future. Please don't feel alone.

I vividly remember going to see an ENT surgeon who sat at his desk with his back to me and asked me questions.

Operating skills and social skills don't go hand in hand, sadly.

To answer your question, kokeshi, yes, I have profound sensorineural deafness. I lost a chunk of my hearing very quickly, then the rest over years.

Unfortunately the "chunk" I lost first contained the speech frequencies, and for a while I was just totally at sea. I could not work out what anyone was saying. It was horrible.

I learned to lipread on my own through sheer necessity - I suppose it was a bit like a language immersion thing - and once I could lipread a bit, everything became so much easier.

So the interesting thing, to me, is that my hearing is now much much worse - but my daily life functioning is tons better than it was in those early days.

Very true welliemum. I think it's been necessity that's pushed me forward as well. I have to learn to lipread, I have no choice. When I still had a bit of hearing I was trying too hard to "listen" and I didn't get far.

I do think I'm improving on a daily basis though which is good for my confidence level. But I'm struck but how many people speak really badly...especially the broad Glaswegian accent.

Bloody ENT surgeons. Clueless. Harrumph.

Hi Kokeshi

My hearing loss in only minimal (at present - who knows if it will become worse) I have difficulty with conversation, television and in the car, background noise interupts and I cant make out what people are saying. I told my husband that I am sure it has got worse but he seems to think its the same but I am just more aware that I have the problem whereas before I thought people just mumbled!
I have no diagnosis, the consultant just told me it was nerve damage and would be expected from someone who was 60 not 30 and he had no idea what caused it and just blame my parents as it may be genetic! I was expecting him to at least run more tests or say he would see me again or look in to it seeing I was young with a hearing loss! Instead it appeared to be a rush out of the room so he could see his next patien (and prob give them bad news too and rush them out!)

I will def keep in touch as it is so nice to be able to talk about things with people who are going through simular difficulties and to find out how people cope etc.

I hope your hearing aids become more comfortable. Have you noticed a difference with your hearing? Does it make things clearer? I was told I could not have inner ear ones, makes me wonder who is intitled to them as they just dont seem to want to give them out! I know they may not work for you but I was told that they would be ok for me but more difficult when they are faulty as the whole aid has to be sent away. Anyway, I cant get them through NHS (I wonder who actually can!)
Anyway, take care of yourself and I will await my 2nd opinion!!!!

Peggotty

Thank you for your advice, Sorry to hear your bad experience too, I think consultants should have some training in empathy and how to deal with patients with hearing probs!

Will look in to RNID, just at the moment I always get upset when I start reading things and part of me wants to forget there is a problem!

Will be calling drs today to get appt for referral so hopefully will see someone soon!

Thanks and hope you are ok and also get things sorted.