Hi betty They have only had afew trials of it and I dont think many people have been fitted here in the uk but its worth checking with the consultant. The man I saw was not my normal consultant, he was a specialist in Birmingham but he may know of someone to put me in touch with. I have looked on the net at them and do want to speak to someone who has had them but as they are so new it is difficult. Am slighty concerned as the battery life is approx 5 yrs so that means they would have to open my head up to change it that freaks me out! I also want to make sure that they will be a good improvement to hearing aids otherwise maybe it is not worth it, I know cosmetically they will be better as they will be hidden!

Hi jen,
thats great news that something can be done, I've never heard of these.
The website looks quite informative, can you get in touch with anyone who has one of these?
I found it a great help talking to people who had stapedectomys in order to make my mind up, and Im so glad I went ahead.
Maybe your consultant could help you find someone willing to chat?

How do you feel about it though?

Hi Betty
I am ok, I had an appt in birmingham and saw a specialist who thinks it is most likely genetic and it ownt get any better, it may get worse or 'bum out' as he said! He has mentioned implants, middle ear implants, which are not the same as cochlear as my hearing is not bad enough for cochlear. It is something I have to think about really. It involes the whole implant being inside my head so not sure how I go about changing the battery every 5 yrs!!!
here is the website.

Glad you are feeling better though and that things are going well. I bet you will look forward to having the other ear done now knowing it really has helped?

Hi jen, how are you?
Ear feeling fine now, thanks. Teleporting stopped unless I'm very tired.
Should be able to have the other one done in a year or so (fingers crossed).
Any progress on your diagnosis yet?

Ah so glad it has helped you, I bet you are really pleased. So its feeling comfortable too now then? When will you be able to get the other ear done?

Hiya Pod, good to hear from you.

I asked about the conduction test, as the 'rushy' headphones were on my right ear, with the with the piece that transmits sound behind my left.
I thought it seemed odd at the time when the audiologist said that what the end of the test.
I asked if she was going to test my right ear, and she said "Not today".
Then I had to wait an hour to see the consultant and forgot to bloody ask! [brain like a fishnet stocking emoticon].

But, yes it has changed things, although it seems 'normal' now, like it's always been this way IYSWIM.
I can definitely hear better tho, a friend shouted my name, way down the street the other day - and I heard it first time YAY.

Cant wait to get the other ear done, and hopefully chuck away the remaining aid!!!

I'm so glad you thought it was worthwhile!

My understanding is that a conduction test is about assessing the degree of nerve damage as opposed to middle ear trouble and I would expect that if you were having your right ear tested then the headpiece that makes the sound should be behind your right ear, and I think the headphones would be ON your ears and the rushing noise played so that you don't hear the noise via your middle ear transmission. Am not 100% sure I have got that right though!

Has it all changed your life much? Are you still wanting to get the other ear fixed? And how close to normal hearing range have you gotten with your "new" ear?!!

Love Pod x

Hi, things are going really well thanks.
The consultant told me I still have some nerve damage aswell, so hearing will never be 'perfect', but I'm very happy with it.

You know when you have a conduction test?
When they put the headphones on one ear with the rushing sound, then place the other small headpiece behind the other ear?

If I was having my right ear tested, what position would the headphones be in?

May sound like an odd Q, but something has been niggling at me and I cant work out if it's me being daft .

Hi Jenwa, don't look up stuff, the consultants are better than the web, you will just scare yourself silly needlessly! I'm glad they are checking you out properly and hope you are feeling better. Hearing problems are not fun.

Betty how are things now, are you pleased with your results?

I know I am terrible for looking stuff up . I hope things do get sorted though as I hate being like this, I can understand of it wont get better but just dont want it any worse

Glad you feeling well though.

jenwa, hi, Im good thanks.
Sorry to hear your hearing is getting a bit worse, but good news on the MOT .
I think everyone presses the button at inappropriate times (did I hear that??, Yes I'll press).

STOP GOOGLEING MEDICAL STUFF!! It'll only get you worked up.

betty Hi there. Appt ok, was so nervous and messed up on the test as kept pressing the button I could not work out if I was hearing things or not as also have tinutis and each time a noise happened it seemed to leave an echo! Anyway, they did get a reading and it has deterioted a little more. The good thing though is I am going to have an MRI to have a look in to things further as I am also getting headaches and my right eye has been playing up a bit, he whas referred be to opthomologist for eye test, ENT specialist in Birmingham and Rheumatologist to see if there is any inflammatory condition going on as there is a condition in my family called anklosis spondalitis (sp) and this could be linked. So basically I am having an MOT Gutted its got worse but glad they are going down lots of other routes to check and see what is causing it. I have been looking on the net and keep seeing tumours!!! I know I should not do it but I am preparing myself for the worst!!!!

How are you doing? How do you feel?

Hi Jenwa, how did your appointment go?

betty I read your message yesterday but never got time to reply sorry! It did make me think though as I as feeling like being confident and actaully wore my hair up and thought 'stuff it'. I totally agree that anyone who takes the piss is not worth it, its just having the confidence I think.

So scared about appt today, feel sooo shaky already!

They have CT scanned me but cant see anything, they really dont know what it is I wish they could fix it though as its a real pain!

Glad you enjoyed the head submerging

betty I read your message yesterday but never got time to reply sorry! It did make me think though as I as feeling like being confident and actaully wore my hair up and thought 'stuff it'. I totally agree that anyone who takes the piss is not worth it, its just having the confidence I think.

So scared about appt today, feel sooo shaky already!

They have CT scanned me but cant see anything, they really dont know what it is I wish they could fix it though as its a real pain!

Glad you enjoyed the head submerging

Hi Jenwa, sorry to hear you're feeling low.
I always hating being tested too.
Have you asked if they can do any different sort of testing to determine what the problem is. Must be awful not knowing.

I used to get embarrased wearing aids too, til one day I thought, 'well, the people who take the piss and stare, are not really people I would like as friends. Therefore, my aid is a good thing, as it sorts the aresholes from potential friends for me' So I tied my hair back (hate it on my face, so has been in boring ponytail for the last 100 years) and if they said anything I came back with "Actually, I'm thinking of having it diamond encrusted" (or something equally ridiculous).

Dont let them grind you down and stop you being you. Crossing my fingers for you on wednesday.

And, yes, submerging my head was bloody lovely .

Hi there

podrick Been off work as feeling low with hearing and driving me mad, have consultant appt weds so will see if it has got worse or not. I am so scared and hate having the tests I have so little confidence now and still am embarrased wearing my hearing aids. I am going to try to make an effort to put my hair up and wear them.

betty Glad things are going well. I hope you enjoyed submerging your head

Feeling really good, thanks. Not nearly as tired as I was, and teleporting is much better, just when yawning or hiccuping but not so violent IYKWIM.
Off for a bath now. Am ridiculously excited at being allowed to submerge my head at last!!

Great news that your surgeon is pleased! How are you feeling in yourself?

Hi, went for hearing test today and surgeon is pleased. Not quite back to 'normal' level yet, but should continue to improve, will retest in 6 months.
I cant have the other ear done for about 18 months as he wants to keep an eye on it, so that kinda fits in with LO going to school, or at least nursery.
Cant wait to hear in stereo .

Hi jenwa, nice to hear from you, how are things with you?

Betty good luck for today - and I know what you mean about the water thing! Beware hairdriers for a while, especially at the hairdressers as a hair drier aimed down your ear might be unpleasant - it was for me for several months.

About getting the other ear fixed - if the results are good on this one and your surgeon is pleased with it then I would suggest that you go for it! Just so long as you can get someone to help you out at home again during the op and post op.

For me I had the worst ear done first and then waited until the better ear deteriorated. But you already have an aid in your other ear so I am not sure what would be gained by waiting. With hindsight I would have done my second ear earlier as it is suprising quite how much better 2 good ears are than one - something I didn't know and couldn't judge before the second op.

podrick ohhh You that sounds fab what you descibed. I am so of you but also so for you getting it back. Those are exactly my feelings at the moment, wishing for sounds that annoy others!

betty good luck for tomorrow, I hope all is well. I think depending on the results you will decide what to do abut the other ear but I think whilst your DS is young it may be better to go ahead now? I think if it could be done then I would go for it and have the full whack

Dont know yet how well it's worked. I go to hospital for hearing tests tomorrow. <nervous>

Dont think I have stereo back yet, as left ear still crap and rely on aid, may find out tomorrow when I can have that one done.

Not sure whether to go for it ASAP or wait a couple of years til DS2 (23mo) is at school and understanding a bit more. WWYD?

Tell you what though, I cant wait to lie in the bath and submerge my head!!

After the first op I liked being able to hear people approach my desk from behind me, I liked to hear other peoples' converstaions in the street, and I loved knowing for sure what people had said to me first time around, and also not having to turn the TV up! I liked hearing sounds that irritate other people, like my neighbours playing music at night because it meant I could hear those sounds! I liked not needing to watch peoples' faces when they spoke to me. My social confidence increased like mad and I hadn't realised how much confidence I had lost until I got it back!

Second time around I could finally hear in stereo for the first time in years so listening to music was absolutely divine - I got my CD collection out after many years of it staying in boxes. And with my hearing completely normal again, I knew that if I hadn't heard somebody I could happily ask them to repeat what they said and it wasn't because there was anything wrong with my hearing - it was them that hadn't spoken loudly enough and not me with bad hearing... Have you got stereo hearing do you think?

I have a positive legacy from the misery of otosclerosis which is that I am now an expert at body language reading and I can spot a lie at a thousand paces - you may find the same thing yourself.

Hiya Podrick. Just a quick update - feeling much better day by day.
I didnt wear hearing aid in the right ear that was done, but still wear one in the left.
Friends come to visit and say "But I thought you had your op, why have you still got your radar in?" Lots of people didnt realise that I was deaf in both ears, but too vain stubborn to wear both .

Noticing definite change in watching TV, have to turn it down now, instead of up! And trying to rely on subtitles less.
Teleporting getting better, although I am getting some odd looks when I say Ive been teleporting, lol.

What were the things you liked to do/listen to after your ops?
Might sound strange, but I love to sit in the garden at night and listen to how quiet it is. Now I hear better, the thing I like best is silence!?!

Hurrah about the driving - and a hilarious snoring episode!!! We are in a semi and I started to hear our neighbours! Dp couldn't believe I had never heard them before!

I guess you are different to me in that you have had aids and still have one whereas I was noticing the difference from unaided (presumably worse) hearing. I could notice stuff like not having the TV up irratingly high for other people any more.

Hope you have a good day and don't do too much teleporting!

Well, took DS2 to playgroup yesterday, by god IT WAS NOISY!!!!
And drove into town today (without crashing, and everything )cos my car tax had run out, and it was fine.

Really starting to feel much better now - as long as I have my afternoon nap .But, yes, coping fine, really.

DH woke me up snoring the other night and it took me 10 mins to work out what it was, I was lying there thinking "Who in the hell is revving a car engine at 3 in the sodding morning" ha ha.

Wanderingsheep it really was like a miracle - both times! Would cochlear implants ever be an option for you do you know? I have heard that they are a fix for nerve damage but not sure who they suit and who they don't exactly...is your hearing much the same as it has always been or has it deteriorated at all?

Betty how are you today me old mucker?

My deafness is caused by nerve damage, which I was born with, so nothing can be done. Never mind, I quite like the fact that I can turn my hearing aids off when DP is nagging at me, lol!

Podrick, I'm glad that the operation worked well for you! It must have felt like a miracle!

!!! The teleporting feeling happens less and less with time until only when you sneeze and then eventually not at all!!! The taste disturbance lasted 2 or 3 months though.

Interestingly this was just for the first ear - which had a very good result for hearing improvement in the end. The surgeon used a slightly shorter prosthesis in the 2nd ear because of my experience first time around, which meant no sickness, no teleporting/dizziness at all for the second ear.

LOL at feeling teleported, that's exactly it !!

Thanks wanderingsheep. Is there nothing that can be done for your hearing loss?

Oops, meant to say wishing you all the best, Betty!

Hi, hope you don't mind me joining in! I've been Reading this thread with such interest.

How amazing that you have been able to have this op. I bet it feels wonderful, maybe not ATM, when you're still feeling a bit rubbish from the op but when you are able to hear properly again.

I have been partially deaf since birth, so have had to wear two hearing aids all my life. I'm pretty well adapted as I've never known any different but I can imagine how awful it must be to lose your hearing as an adult! Very frustrating! I've always been used to wearing hearing aids so find them comfortable (feels more weird without them, if that makes sense), but I bet they're awful if you're wearing them for the first time.

For me the dizziness was occaisional not all the time, and felt like I imagined it would feel if you had just teleported in from somewhere else! Very disconcerting.

Ooh I can't remember... Sometime after the packing cAme out...def not before.,. Just take it a day at a time, your body will take as long as it needs and try to go with it, don't expect too much and then one day you will wake up feeling like your old self again I promise. Try not to put pressure on yourself and really try to take it easy and have naps.

Podrick,how long till you could drive?
Dont feel quite up to it yet,but have MN meetup on monday.

jenwa I found work the hardest situation to cope with - particularly in meetings where for some individuals I just never knew what they said . Impossible really.

Betty a week and a half is nothing, and don't feel bad because it won't help you recover. I took four weeks remember!

podrick yes DH is great and I am working but it is proving to be difficult at times

betty oh you should not feel bad for asking for help, I am sure people will do it for you knowing this is such a big thing to have gone through and that you will be soo much better after. I bet your mum really does not mind.

Hi,not feeling too bad, thanks. Really wierd if I yawn though,go dead dizzy most bizarre!

Oh yes,nap while little one has his nap,dont think I could cope without.
My mam is coming for a couple of hours tomorrow so that will take the pressure off a bit.
Feela bit crap that Im still asking for help,it's been a week and a half and thought I'd be pretty much back to normal now.

Hope you are coping OK today - can you have a nap with the kids at all?

And how are you feeling?

DH bolognaise was nice, but then,I had written down my recipe in a simple way, cant go wrong really,except it was up the kitchen wall a bit . He had cooked enough pasta for about 17 people though!

DS2 is 23mo,so quite hard work sometimes.DH back to work proper this week, so have no choice but to get on with things.

Definitely take it as easy as you can! My tiredness didn't gradually lift - I was chronically shattered every day for 4 weeks - and then I woke up with my energy back all of a sudden one day.

What did you think of DH's bolognaise?

Hope you manage alright with DS2 today - how old is he?

Surgeon seems happy with how it all went. Everything is still sounding a bit muffled, and still wearing hearing aid in left ear.

Not so bone wrenchingly tired the last couple of days, although I havent really needed to lift a finger thanks to wonderful DH.
He even cooked bolognaise from scratch the other night, 1st time he's cooked in 13 years together!!!
He had to go into work today and we have nobody to help out with v active DS2, but Im coping ok.
May even treat myself to a glass of wine tonight.

Is your surgeon happy with the results so far although the op was tricky? I think you willstart to notice improvements over the next days as the swelling goes down and the brain retrains. Take it easy, glad your dh is helping you. Keep the updates coming!

Hi,had packing out today,still feeling quite disorientated, but surgeon explained that I have narrow ear canal,that the bone was tricky to get out and the implant needed repositioning a couple of times, so it's to be expected that I will take a little longer to recover.
He also gave me eyedrops to put in my ears, apparently they are a bit gentler.
Hearing is wee bit better,go back in 2 weeks for tests.
Will keep you updated.

Betty did you get your packing out today? How are you?

Pegotty it seems very bad luck to have otosclerosis in both ears AND underlying nerve damage both sides...do you think itwould be worth a second opinion?
Jenwa sorry you are having such a hard time. My problems affected my social confidence so I know what you mean. Do you have a supportive partner, and are you working?

Hi all. Still feel a bit crap and very disorientated. I am completely shattered,but DH has been unbelievable and done everything for me.
If I didnt feel so crap,I'd feel like a queen .

All gatecrahers welcome

Peggoty,sorry the surgery isnt viable for you but good luck with your laser eye surgery,my friend had it done and she said it was amazing.

Jenwa,that is exactly the symptoms of my hearing loss,I also avoided social situations unless I knew it would be a quiet one.

podrick I have difficulties in noisy places, ball pits with the kids and pubs with the adults I dont really go out much anymore as I have got myself worked up about it. I actually saw a dr today and have been given AD's as I have got myself so low recently about it all and everything has got on top of me I find tv and phones hard and when people talk to me as they are walking away from me hard. What is really annoying is when people whisper and I say pardon and they then mouth it but over emphisise it, I need volume! I do wish I could get it fixed!

peggotty I have gate crashed this thread I have digital aids too. Are yours nhs? I have phonak ones now from specsavers so smaller but still behind the ear open fit. Sorry the stapedectomy is no good for you. Sorry about your eyesight too, its so unfair when you have more than one prob, why cant people be dealt things equally! Hearing loss is enough on its own to deal with

hello I hope noone minds me joining in this thread?! I was on the old thread that was linked too earlier as well. I have otosclerosis and have had digital hearing aids for over 2 years now. Unfortunately the stapedectomy is not an option for me as my inner ear is also not particularily great and even if I had the op i would still have to wear aids . Good to hear of other success stories though! Jenwa, I agree about it being depressing to have awful hearing - hearing aids are just not the same, and I find it difficult to contemplate wearing them for the rest of my life. To make matters worse I also have terrible eyesight - aargh my senses are all failing! As soon as I can afford it I am going for laser treatment though, at least that is something I can have some influence over!!

Jenwa it must be hard not having a diagnosis as such. What are the worst situations for you?

Just read Friday is the day! They will retest your hearing I imagine in few weeks so you can tell how much of an improvement there has been. The brain needs time to retrain itself after the packing is gone, like when you first get hearing aids. Try to take thongs as easy as you can and listen to your body to help with the recovery...it can be a bit emotional as an experience, or at least it was for me.

Hi betty, hope you are ok, please give us an update! When is the packing due out? It's very normal to feel shattered and your taste wil l go back to normal although this took maybe 2 or 3 months for me. I can't wait for you to get the packing out! It will be wierd when you do but your hearing will then improve like mad over the following few days! Stick with it, the op and recovery aren't fun but so incredibly worth it!

betty I hope you feel better soon, I am sure it is just after effects, I bet it all feels very weird.

I am under the consultant for regular tests to keep an eye on it. He thinks its strange to have this loss early and not really know what is causing it. I just hope its not really serious and that I dont loose it all and am freaked about bone anchored aids too hoping I dont need those!

Yes I have packing in my ear,see consultant on friday and I think it will be removed then.I am so tired, have been sleeping lots.I feel so disorientated, like a bad hangover or being on wierd drugs and very very dizzy.
Half of my tongue is numb with strange taste.but I guess this will improve in time(small price to pay even if it doesnt)

jenwa it may be worth asking for repeat tests,as mine came back with different results which varied between sensory and conductive loss,and eventually was decided it was otosclerosis/conductive.

It's awful having to struggle to hear.I really hope they can do something for you.

Hi podrick I dont know what is responsible for my hearing loss, they cant seem to work it out! Much the same in both ears (slightly worse in right) I just wish they knew really as when you are told at 30 you have the hearing of a 60yr old its quite depressin . Yes I wera hearing aids, have now got some private ones although they are still behind the ear and open fit. I really struggle at times and it is really depressing. Its been 2 yrs since I have worn them now and I am still (sad) about it!
I am so glad that you have had your probs sorted, I would love to be able to have it fixed but not sure it will be. I am sort of hoping it turns out to follow the otosclerosis pattern so I can have it done!

OMG Betty!
You did it!!!!!!! I am so thrilled!!!
I am assuming you have "packing" in your ear to help it heal and that you need to get it removed in /?14 days or so? If so then once the packing is removed you will notice a HUGE difference, also the swelling needs to die down from the op, and even after the packing is out your hearing will continue to improve as your brain retrains itself to hear the sound.

I only had dizziness on my first op, and this got progressively over a few days but still was wierd when I sneezed for some time after...how is your sense of taste?

As for tiredness, that varies hugely for individuals. I feel SHATTERED for 4 weeks then one day I woke up totally fine again!!
But most people would recover faster than that, 2 weeks might be average.

Keep posting, I am so excited for you!!!
Lots of love Podrick

Jenwa didn't want to ignore you, what is responsible for your hearing probs? Big sympathy to you, I found it quite miserable to have my hearing problem and also found other people to be less than understanding and supportive much of the time . Do you have aids, and do they help?

have been reading this thread as I have bad hearing altough been told its not cureable I have a high frequency loss and they dont think its otosclerosis (sp) as its not following same pattern, it really does get me down though and I feel so out of it at times. I really wish I could have something done. I am so pleased you got yours sorted and that your hearing has improved. I bet it is strange hearing noises you dont recognise? Although Hearing aids are like that to begin with so I imagine over time it will be ok.

Hiya Podrick, had my op on thursday, got home last night. OMG,soooo dizzy!!
Surgeon said it was quite tricky to get the bone out and replace it, so I may have more dizzyness than usual(room is swimming if Imove my haed a littlebit) but at least I dont feel sick.
Good news is I could tell a major difference as soon as I came round, and it should improve with time.
How long did you feel dizzy/v.tired for? We are trying to organise a MN meetup for 4th august which would be lovely to go to and actually hear everyone.
Everything sounds odd ATM,stilltrying to work out what some sounds are,but itsgreat.

Just want to say thanks again for taking the time to chat and support me.

Hurrah!
Am excited for you! Getting your hearing back after it has been lost is magical

Eek, I have my date for the op. 23rd july.

Shit that's only a fornight away!!

Sounds like you are ready to go! I didn't have the hand thing last time but might have done for my first ear, hard to remember now it was around 8 years ago!

Hiya, Surgeon said he would go in through eardrum. I have had general a few times but not for a good while, and have always been fine re vomiting.

DH says he will be on hand for a week or so to help with kids. If he has to go to work, my mam or his will likely help out.

Hi Betty
You should expect not to vomit unless you have a reaction to the anaesthetic - if you have had a general recently you will know if this caused nausea - and if it did you just tell the anaesthetist and they will make sure it doesn't happen again.

I am wondering if your surgeon is going to get to the stapes via the back of the ear rather than through the ear hole - did he say anything about that?

I would plan for some help with the kids if possible at least for the first few days.

Keep posting! Good Luck! I cannot tell you how delighted I am that I finally took the plunge for my own ops - the results were life changing for me

Thanks Podrick, will let you know how it goes.
Keep your fingers crossed for me.

HI Betty
Metallic tast for a few months on my first op
Vomited after anaesthetic on 1st op but aanaesthetic drugs had improved by the 2nd op and no nausea
Temporary moments of dizziness - again 1st op only
No graft - suspect this is to patch up behind ouotside of ear

Well, I saw my consultant today, and I'm on the waiting list to have my right ear done. Should be a couple of months-ish.
Podrick (and of course any other stapedectomy patients) did you suffer much dizziness, numb tongue/loss of taste or nausea?
I cant bear feeling sick - makes me feel ill LOL.
I was told today that he will take a small vein from my hand to help graft the implant (or summat??) did this happen to you?

Babyjamas I would second get another consultant and reconsider the op unless you really are "happy to wear hearing aids" - is anybody really happy with that?

I can hear our neighbours sometimes now my hearing is better - AND dp snoring - and I really honestly don't mind at all...a miniscule price to pay for the gift of hearing in my book - surely this wouldn't really put you off, would it??!!

sparklefrog greetings to a fellow stapedectomy mumsnetter at last! Glad it worked for you!

More about the op - I am tinnitus free. I forgot about the hair washing thing - I washed my hair with my head tipped to one side over the sink and got my mum to help me. I wouldn't trust a hairdresser and the hair dryer will probably be unpleasant for a little while after the op if aimed at your ear. Keeping it dry is to reduce the chance of an infection to the external wound.

I beleive that the normal way to operate is through the eardrum but a very few surgeons go in from behind the ear.

One thing that is annoying about the op is that you don't always get more than 2 weeks notice of the date and the op can be cancelled the day before which is difficult to make arrangements for and a pain psychologically.

I have a date to see surgeon, 26th june, so I guess I will get date for the op then. YAAAAYYYY!!! .

babyjamas, have you thought about a different consultant? Yours sounded like he couldnt be arsed. If it's what you want, then pursue it, if you're happy with your aids, great, if not, ask to see someone else.
LOL at the snoring, Im dreading listening to DH again.

Sparkle, have you ever considered having the other ear done?
I thought the routine way to do the op was through the ear drum. Is there another way?

I have been warned about water in ears, so have decided to treat myself to hair appts for wash and blow dry while its healing. Twice a week should do it with dry shampoo spray in between if it's looking a bit skanky (love that word ).

Will keep you updated.

I had a stapedectomy in 1988. Only ever had 1 ear done, but hearing again is wonderful. I was dizzy and nauseous for a few days if i remember correct, because surgeon entered my ear via the eardrum, so messed with the fluid in there.

Coming out of hospital upon being discharged after all wadding was removed was quite scary tbh, since lorries sounded like aeroplanes, they were so noisy, but things soon settled down.

I couldn't get any water in my ear for a while, a few weeks if i remember right, so hair washing was a pain, but straight away it was worth it.
It is a curable form of deafness.
No one can tell I am profoundly deaf in one ear now, because my hearing is so good in the ear I've had the stapedectomy.

Think there is a slightly higher risk of tinnitus after a stapedectomy, but not 100% sure of that. I am fine.

i've been reading this thread with interest. i suffer from otosclerosis in both ears and have been wearing aids for the last 3 years. i saw a consultant about 3 years ago re: the stapendectomy but tbh he didn't seem that enthusiastic and pretty much said that if i was happy to wear hearing aids then to go with that instead. it would almost be weird to be able to hear normally again! one thing that does stop me pursuing the operation option is my memories of the 'good old days' when i would be unable to sleep due to dh's snoring. these days i just take my aids out and happily go to sleep. the quote about office gossip made me laugh - i think i missed out on years of gossip and am still catching up to this day (actually, think my hearing is deteriorating as i'm starting to miss things again even with aids turned up to the max). Betty - i'll keep an eye out for news of your op, it'll be interesting to hear all about it, and might just prompt me into action!

<<< twirls prettily >>>

Get them to imagine that when folk whisper the best office gossip in their ear they won't have a clue what was said but will have to pretend they have heard and act appropriately!!!

I tell them, if they want to know what it's like, to walk around with cotton wool or earplugs in for a day (of course they dont - well you wouldnt when you can hear would you?) But they say, "Oh, is that what its like then? Aww, poor you"

Cant wait for my miracle <<does a little dance>>.

It will be like a miracle, Betty - I think it is hard to know how much of an impact poor hearing can have on your life - I thought I knew but actually I didn't really realise how much until I got my hearing back...

I will, soon as I get a date.
My friends dont get what the big deal is, just kinda say, "Oh, that'll be good". But for me, this is HUUUUUUUUUUGGGGGEE .

That's brilliant - keep me posted with updates so I can share your joy of ditching the aids!

Well my family is complete, 2 beautiful boys, am defo taking the option to have the op, cant wait!!!! [excited].

You could ask the surgeon how many of these ops he has done and what his personal success rate is...that would be my main question and he shouldn't mind being asked.

I feel excited for you!

Most people with this condition do opt for surgery but not everyone does and of course it is a personal decision - there are other mumsnetters who ~I know have taken the hearing aid route instead of an op, or who are waiting until they complete their families, but I don't know any other mumsnetters who have had the op...maybe someone else will come out of the woodwork!

Well still havent got a date for the op yet, so ok really, I mean, it doesnt feel like anything has changed IYSWIM.
When I get a call to see the surgeon again, it will seem a bit more real.(And I'll probably star worrying a bit then).

3 hours away might be bit of a push, but thanks v much.

3 hours away so probably not the most convenient really...although not impossible! My most important advice is do some research on your potential choice of surgeon and their experience level of this particular operation.

How are you feeling about things at the moment?

Ooh, Im in Durham, is that anywhere near?

If you happen to be in the east of england I could recommend you a surgeon Betty.

I was wondering if the NHS has moved to offering in the ear aids yet since what is offered tends to improve over time with regards to technology. I was told that I would have been able to get in the ear aids had I not had the op, mainly on the grounds of my relatively young age - I was 32.

I think popping ears is not going to be a problem at all - check with your surgeon but I don't think it will be an issue.

My understanding is that otosclerosis tends to be inherited and tends to typically affect women in their 30's and above. It's progress can speed up with pregnancy hormones and this is what happened to me. However, there is no deafness in my family so I don't know why I've got it!! I think my dd will have a 25% chance of getting it too though unfortunately.

Everyone has their own decision to make and their own considerations and circumstances, but I would say that the benefit to be gained from this op is absolutely huge and life changing. I can't tell you how exciting and incredible it is to hear well again.

My hearing has got worse since I got first hearing aid, cant get in the ear model as cant get those on NHS and cant afford to go private, and I need 60db in each ear to compensate to normal hearing.

Its not so much blowing my nose, but sort of 'popping' them like you do on planes, although I do blow my nose a bit too.

Is anyone in your family deaf?
It seems to affect mainly females in my family.

Otosclerosis is progressive so it might not be wearing your hearing aids that makes it harder to follow conversations without an aid, it might just be that your hearing is getting worse . Can you get an in-the-ear aid instead?

Re blowing your nose, you are advised to keep your mouth open when you blow/sneeze for a week or two - why not practise and see if you can do this??!!!! I wasn't told this could dislodge the implant...but if it did, you would just need to redo the op to put it back in place.

I was scared of a total failure too. But 1% is a vvvv small percentage and if your surgeon has done a lot of stapedectomies your chances of a problem will be less than this. Find yourself a surgeon who has done hundreds of this particualr operation to reassure yourself. Hopefully catch you later, am off to pick up dd from school!

Im scared that it will totally fail.
I have a habit of blowing my nose a lot, and am trying to stop this, as I know it can 'blow out' the stape implant.

I'm supposed to wear 2 aids (got the second one a couple of months ago, had the first for around 9 years now) I still only wear one, as it sounds too echoey and distorted.
Also, I had my ears pinned back as a child (think love child of Prince Charles and Charlotte Church - LOL) so I have a ridge of scar tissue on the back of each ear.
When I got my first aid, it rubbed so badly that it blistered and bled.
Nothing could be done, apart from vaseline to ease rubbing, and I had to wait for it to callous over (took ages and was painful).
So, I dont really want to start with 2nd aid, as the discomfort was too much (I am a bit of a wuss )

Also, I think the more you wear a hearing aid, the more you rely on it. For example when I had none, I could manage to follow a convo to a half decent standard, now Im used to wearing one aid, if I take it out, I cant follow anything.

DS2 just woke from nap, have to go.
Thanks for letting me offload, be back tonight.

Also, how do you get on with your hearing aid, what are your feelings about it?

Getting your hearing back will be even better than you think it will be - although be prepared that 1 good/perfect hearing ear will make a big difference but will still be significantly worse than 2 good/perfect ears. And you will be able to hear night time crying but only if you don't sleep on your good ear! At my worst somehow I still heard most night time crying better than my dp who has no hearing probs at all!

Share your nerves with me - what exactly is it that is scary for you about the op?

Wow, thanks Podrick, that's so positive.
Have to admit to being very nervous, but also sheer excitement at the thought of being able to hear properly again.

Another issue might be that whilst stpedectomies can fix otosclerosis, if you also have other reasons why your hearing is poor, those reasons will still be there after the op...eg if you have nerve damage which is a seperate condition from the otosclerosis then the op won't sort out the nerve damage.

Your surgeon will have a good idea as to whether you have nerve damage from your audiology tests so he/she will be able to judge how much benefit they think the op can give you. For me I have hearing within normal limits and now that both ears have been fixed I can hear music in stereo again as well. After each op I was on Cloud 9 for weeks - you asked for details of feelings and mine were fear of the op initially, and then long lasting euphoria from the results!

Hi Betty, it's not a painful op, a few normal headache tablets will do the trick quite easily.

The op in 2006 was a shorter stay with less after effects than the first op due to progress in anaesthesia - you should expect to stay in hospital for 1 night only. I had disturbed taste for a month after the first op, and a little short term dizziness, but didn't get either of these when I had my second ear done. I was quite tired after both ops though, plus you can't hear brilliantly immediately because you will have packing material in your ear for 10 days to help it to heal over. If you can plan to have a bit of help at home for a while it will be good.

They normally offer to do the worst ear first and then the other ear at a later stage once the first one is safely done(assuming that you are affected in both ears - lots of folk aren't) .

I was told a 1% chance of knocking out the auditory nerve (the worst case which leaves that ear "dead") and a small chance that they would need to do 2 ops to get a result and not just one. And a small chance that it just wouldn't give me much benefit.

Having the op has boosted my confidence so much as I hadn't realised quite how much of an impact poor hearing was having on me.
If you have any other questions then ask away! Most people with otosclerosis opt for the op rather than for hearing aids, especially younger people, and most get life changing results. The risk of losing hearing in one ear completely is very small but it is a serious one and this is why they will not operate on your second ear until they are happy that the first has been successful.

Hope this helps!

Hi Podrick, great to hear <no pun intended > that your ops worked fine, can I ask how painful it was, if you had any side effects like dizziness and how long your stay in hospital was?
I recently had extra tests, and otosclerosis has been confirmed, so am eligible for the op (Yay). Surgeon said approx 1% chance of failure, but I had read via internet it could be up to 20%. What were you told?

Sorry to bombard you with questions, but I haven't met anyone who has had a double op before.

I just found this thread - I'm mousie reincarnated...I have now had stapedectomies on both ears in ?? 2001 and in ???2006.

This has saved me from wearing double hearing aids which was my other option - both ears have normal hearing again now and this is by far the most common outcome for stapedectomies.

Happy to answer any questions about the op if it would be helpful...I agonised over the decision to have the op both times but am so very glad I made it. Make sure your chosen surgeon has done loads of stapedectomies as this improves the outcomes significantly.

The test you had behind the ear was probably the bone conduction test.

They compare the results of the through the ear and behind the ear tests to determine if the loss is conductive or sensori neural.

Strangely enough I was talking to a lady I work with today who has otosclerosis who started having problems with her hearing in her 20s. She has had an staepedactomy on one of her ears and said it improved her hearing a bit but she still has to wear two hearing aids.

I think that the problem is that the calcification of the little bones which causes the otersclerosis can recurr meaning that the potential success of the operation can be short lived.

A year, Copper, god thats awful! When they throw you a lifeline (or so it feels anyway) you just want to move things along as fast as possible dont you?
I remember waiting a while when I got my 1st hearing aid, as they were just branching out into digital and everybody wanted one.
Hope you get seen soon.

I havent had a bone conduction test as you describe, just a regular on where you have headphones on and behind your ear, but they said they could tell from this that the loss was conductive.
I think given the choice I would rather go for the stapendectomy, as then there is no need to wear an aid.
I have had mine for approx 8 years and still feel a bit self concious. But it is certainly something to ask about if it turns out that the stapendectomy isnt feasable for me, so thanks.

7 weeks? I've been waiting almost a year!! The only thing the audiologist said about waiting times was that as they have to follow govt guidelines for appointments for hearing tests and getting hearing aids, it has had a knock-on effect on other areas of ENT/audiology.

I'm in Cambs. I can't afford to go provate but will certainly look into finding out about how much longer I'm supposed to wait.

I was given my original diagnosis up in the NE, at the Freeman hospital. It seems like a lifetime ago.

p.s. it doesn't kill off any nerves as the stud that the hearing aid attaches to is only fitted onto the skull bone not right into the nerves in the cochlear.

No a BAHA is not a cochlear implant. That is used to treat profound sensori neural hearing losses.

If you have a conductive hearing loss then you must have had a bone conduction hearing test which enables the audiologist to determine what kind of hearing loss you have.

With a bone conduction test they put a little probe type thing on your head somewhere and the sounds are vibrated through the bones in your head to the inner ear where the cochlear is. They can tell from this test if the inner ear is working normally.

A BAHA transmits sounds through the skull bones to the cochlear. I am surprised it hasn't been mentioned.

My mum has a disease which has destroyed her ear drums and middle ears but her inner ears work perfectly. The reconstructive surgery she could have had to rebuild the middle ears was much more complicated than the BAHA operation. Might be worth asking about. See
here for more info.

Smartie, Ive never heard of BAHA, is it like cochlear implant? As I thought that they have to 'kill off' the nerves for that to work and there is no going back after that? Yes my hearing loss is conductive, waiting to see consultant to verify otosclerosis.

Copper, where are you and how long have you been waiting? I had appt last monday at ENT, they said up to 7 weeks to see consultant (although she would try to hurry things a touch, as she works some clinics with Dr) and a further 10 weeks after that for the op.
I am in the north east.
Have you thought about a private consult to speed things up? I think you could still have op on NHS.

At the time of that thread I was told that my hearing wasn't bad enough. It then got worse. When I got my digital hearing aids last year the audiologist who programmed them for me said that I would probably be eligible now. He made a referral to the consultant for me and basically I'm still waiting for an appointment to come through.

Is your hearing loss mainly conductive? (opertions to replace the stapes and mousies advice on otoscerosis would seem to suggest this.)

If so has anyone suggested a bone anchored hearing aid? (BAHA)You have a small titanium stud fitted on the mastoid bone behind the ear which the digital hearing aid attaches to and the sound is transmitted through the skull bones to the inner ear.

It's a very small operation done by way of a local anaesthetic. My mum had one done recently and it's wonderful.

I have also had a pupil with a profound conductive hearing loss who had one fitted and he could hear almost perfectly.

Thanks for the bumps and all your advice, esp the link to previous thread, mousie really seems to know her onions!
Copper, I noticed you posted on that thread, yet still havent had the op. Is there anything holding you back or did they not deem your hearing loss to be bad enough?

Im so sick of saying 'pardon'.
I hate that Ive had a hearing aid since the age of 26, that all my 'friends' took the piss when it was something that really upset me and dented my confidence.

I hate the thought of having to wear another aid, as it took me ages to get used to this one. I had my ears pinned back, years ago, and have scar tissue at the back of my ears, which rubbed badly against hearing aid and blistered till it calloused over.
Not looking forward to going through that again.

Sorry if that sounds really whingy, just feeling a bit low and uncertain about this.

Mousiemousie has some good advice on this thread.

I haven't had the op yet but have been told that my hearing is now at a level where they would recommend it. I was told that basically they would advise people to only have the op when there is very little hearing left to lose. I was given a figure of a 10% chance of the operation failing but I think that with the improved techniques this figure could be even lower now.

I don't know what my exact levels are but without hearing aids in I can't really hear anything. A second hearing aid should make a big difference IME.

At night time I mainly rely on dh but if he was away I would go with the alert options that PIJC suggests.

I'm sure there have been previous threads where MNers have had the operation and been very positive about it. I'll have a quick look to see if I can find it for you

I'll bump the thread for you

Betty - there is a thread going about this at the moment and I've posted links onto alert devices you can buy for things you have described. They should have told you about this at the ENT..it makes me so cross when they don't!

No experience of the surgery you describe but if you google RNID, you will be able to get more information and also look at their online catalogue of alert devices

Bumping for you.

How bad is your hearing loss, and how do you cope with crying at night?
I cant hear anything under 60 decibels, so have 1 aid, have just been told I should have 2, am getting this next week.
At night, I either have to take the monitor up next to me on full volume (even though DS2 is only about 12 feet away in his room) or rely on DH.
I was told yesterday that I may be able to have surgery to replace the stape bone, but this has around 20% chance of complete hearing loss.
Does anyone have experiance of this, either yourselves or someone you know?
Would love to get another perspective as google only tells you facts, not feelings, IYSWIM.