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.

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.

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

Ooh, Im in Durham, is that anywhere near?

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?

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.

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

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

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 .

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 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 .

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'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!

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 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.

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.

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?

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

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

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

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.

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!

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

Shit that's only a fornight away!!

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

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.