Any hearing impaired mums? Anyone had a Stapecdomy?

[BettySwollux]

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.

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.

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?

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!

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.

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!

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!

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.

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

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!!

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

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.

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,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.

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!

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.

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?

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.

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

And how are you feeling?

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.

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.

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

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.

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.

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.