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.

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

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

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

!!! 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.

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!

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?

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.

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!

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!?!

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.

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

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!!

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

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.

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 .

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

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!!

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

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 .

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, how did your appointment go?

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?

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.

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.

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?

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 .