Mumsnet Talk

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.

Bumping 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

I'll bump the thread for you

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

Mousiemousie has some good advice on this thread.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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!

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!

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.

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?

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

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.

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!