AMA
Q123R · 28/10/2021 23:57
I'm so happy for you, @Ibizafun!
Am interested about the hearing loss-dementia link. My mum had hearing aids ten years ago but only wore them for a few months; she was diagnosed with dementia earlier this year. If there is a link between them I'm getting aids as soon as I need them. I've had a quick Google but I don't suppose you could send me in the direction of any research into this, could you?
bollocksybollocks · 29/10/2021 00:00
@Ibizafun
I am always happy to chat to anyone whenever asked, I've had parents who are considering CI's meet my son and I've explained our story although I'm very aware that it isn't always as straight forward or such a positive experience for everybody. When we were considering implants we were put in touch with teenagers with CI's which helped us to decide. We've also been lucky to have a huge amount of support from the NHS so I'm always really keen to help anyone else make some sense of what is a really scary time.
Ibizafun · 29/10/2021 00:02
Q123R I will have a look tomorrow for you, but it is absolutely linked to dementia. It is vitally important to get aids as soon as you need them or not only does your hearing decrease but your brain’s ability to interpret speech diminishes over time.
Before the op, dh would say something to me, there would be a delay, then my brain would “understand” what he said.
bollocksybollocks · 29/10/2021 00:06
[quote purpleme12]@bollocksybollocks did you come across people it didn't work for then?[/quote]
Yes I've heard of a few children it hasn't worked for, i also know an adult who was born deaf and was implanted as an adult but because they haven't ever heard sound before it was of very minimal benefit, luckily most seem to benefit hugely though!
GroggyLegs · 29/10/2021 00:09
Fascinating thread OP. Thank you to everyone who's shared their stories.
Also following as I'm interested to learn about the hearing/dementia link. My Dad obviously struggles these days, but I think it's vanity or pride stopping him getting his hearing checked 
CherryBlossomAutumn · 29/10/2021 01:04
It’s really interesting, esp how sounds were hard at first, some sounds are still a bit distorted but overall it’s very good.
In response to you: CherryBlossomAutumn what timescale have you been given to know whether your child’s hearing loss is progressive or not?
My child’s hearing loss is recently discovered, so not sure how long he’s had it. He has complex needs and developmental delays. Not from birth. They can’t say whether it’s progressive but have hinted that this is a good possibility as no obvious external cause. He may not be able to tolerate investigations and on a long waiting list for consultants. He’s 10 years now so just preparing as his hearing is nearly on the severe level now. He has speech though (but was delayed).
purpleme12 · 29/10/2021 02:05
I have another question
Now you have the cochlear implant and you say you've got used to it, what level is your hearing at?
Is it still reduced hearing from normal? If so how much hearing loss do you have still? Or does it actually bring your hearing up to normal level?
Ibizafun · 29/10/2021 08:18
Hadtojoinin I doubt you would get one on the nhs as they look at how you manage overall but it’s always worth a try.
Hearingfriend funnily enough, accents were the first sign of my hearing loss. It is a faulty gene that i inherited. My dad Lost his hearing but not till he was in his forties.
I learned to lip read but wasn’t great at it.. try lip reading a table of ten people at once!
That’s a really good question purple. Volume isn’t an issue with CI’s as it is with hearing aids. I don’t have hearing tests now because I don’t feel I need them. The issue is they have different levels of success in different situations. I still struggle a bit in noisy environments but can usually hear the person next to me or opposite me.
musicmaiden · 29/10/2021 09:20
@Ibizafun I am 46 and in early exploratory phases of CI with similar history to you, although I 'manage', with one ear a bit better than the other with a hearing aid (can hear nothing without). It's definitely getting worse though. May I ask which model you opted for and also how you went about getting a second privately and how much that cost? I agree it is tough to only get one on NHS but I suppose it is a big expense.
Also, how long was it before you could recognise speech well and how is it in noisier situations? And does music sound actively unpleasant (so you avoid it) or just distorted? Thank you for your thread!
nomorespaghetti · 29/10/2021 09:29
Thanks for this thread OP! My little girl has implants, she was born profoundly deaf and got them at 1.5 years old. I have many questions but feel free to only answer the ones you want to!
What are the most challenging listening conditions for you?
Are your friends/family deaf aware? (I don’t seem to be able to get it through to my family that they need to get DDs attention before talking to her, even though she’s been deaf all her life!!!)
Do you need quiet when you first put them on in the morning? Do they feel uncomfortable/too loud?
Do you use a radio aid or anything like that? If so, do you find it helps?
Spodo · 29/10/2021 09:53
A very uplifting story with a happy ending. My deaf journey was similar and I was offered implants when I was almost 40, after nearly 20 years of degeneration. I had loads of information given to me, but I opted for an operation and stronger hearing aids. I am so pleased it worked for you when you made that big decision. I laughed at your music time warp, I am in a 60/70's warp, ha ha ha. Thank you for sharing your story, it is so lovely to hear of people in the same predicament, and what they decided and how it turned out.
Ibizafun · 29/10/2021 09:59
musicmaiden I opted for Cochlear for the simple reason of vanity. They do a model called Kanso with no words which you literally just throw on under your hair.
I don’t need quiet to put them on at all, I put them on when I’m ready
For the private op with all the audiology appointments, I’m not sure exactly but I think it was around £50k so not cheap. I had the same surgeon in the same hospital.
nomorespaghetti ask as many questions as you like. The most challenging listening conditions are lots of people speaking around me at the same time, or noise in a restaurant. My children grew up insisting I looked at them when they spoke.. it was strange for them then not having to.
I don’t need quiet to put them on in the morning, I just put them on when I’m ready to hear and start my day. I don’t need a radio aid, I not even sure what that is.. I just put them on and hear. I am so pleased your little girl was implanted so early. How old is she now and how is she finding it?
nomorespaghetti · 29/10/2021 10:38
Thanks Ibizafun. She’s doing fabulously! She wasn’t actually diagnosed until she was 13 months (passed the newborn screen even though she was profoundly deaf, can you believe), and she had her first operation (she had them sequentially) at 17 months. The implant centre were incredibly on the ball! She’s 5.5 now and such a high flier, popular, kind, bright, joyous and just brilliant! I’m so grateful every day that I get to hear her wonderful little voice, and that I can raise her with my own language and have the kind of deep and meaningful conversations with her that I don’t think I would be able to if I was raising her with a language that I wasn’t fluent in. We’ve also been successful in getting her a lot of support at school, and the school understand that she doesn’t just need to keep up, she needs the opportunity to meet her full potential.
The radio aid is like a little microphone one can wear that sends your voice directly to her processors. The teacher uses it at school, but we get to bring it home as well. It’s great in noisy environments, or when she’s 20m away from me across a playground!
Ibizafun · 29/10/2021 11:20
nomorespaghetti that is just so amazing, sounds like she’s doing exceptionally well for a child even without hearing issues!! How absolutely lovely to hear how happy and contented she is. I just don’t understand how anyone wouldn’t want that for their child now we have this technology.
Spodo, if you don’t mind me asking, what operation did you have? I am not aware of an op for degenerative hearing loss. I too would have opted for stronger hearing aids but there weren’t any powerful enough without distorting the sound.
Spodo · 09/01/2022 18:04
@Ibizafun sorry for the really late reply, I'm hopeless at this lark and couldn't find how to get back into it, ha ha ha. With the help of my daughter I've just seen your question.
The op I had was called a stapedectomy. My hearing loss is due to the 3 small bones in your ear hardening and strangling the nerves. Those bones were replaced with teflon, but it doesn't restore the hearing loss, just stops it getting any worse. I was already very deaf, but with the help of stronger aids I could hear a little bit better. At the time (1999) CI's weren't as advanced as they are now, and I didn't feel like I wanted them. Maybe a stapedectomy wouldn't have been any good for you. It sounds like you are doing great with your implants. How do you cope with people wearing masks? I find it a nightmare! X
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