Welcome from another newbie! I am in Australia too. Glad to hear your daughter is doing so well with CIs. If you don't mind me asking, I am curious to know how you decided on MedEL implants for your daughter? I am just staring to learn about CIs and the Australian experience of them and am keen to know what options we have here. I have recently acquired SSD in my left ear by the way - hence the curiosity!
Hope you have a good weekend
@Mary Beth @Daniel the Stranger Thanks for your comments
Mary Beth I have heard of the ADHEAR but not tried it, thanks for the suggestion. As you said, in my case it is sensorineural total hearing loss on the left + tinnitus and excellent hearing on the right.. I am told my left hearing nerve is in good condition (from the MRI).
I am yet to find an audi who has any real interest in rehab - so far I've been told I'll just get used to SSD, or I should get a CI, or CROS, BAHA or install lots of carpets in my home!! None of them seem to want to spend much time with me talking about those options, beyond testing my hearing. I am trying another audi in a couple of weeks for a rehab only appointment so I will ask about the bone conduction options then. I am not so keen on the CROS as the idea of putting MORE sound into my already overwhelmed right ear sounds horrible! While CI sounds good in the sense of potentially reducing tinnitus and hopefully restoring hearing to the left, I am cautious of going straight to a surgical option. I feel I have already been so unlucky as to develop SSD I am not sure I want to test my luck with surgery just yet!
I really appreciate all of your input, it has been such a sudden thing for me and I feel so fortunate that you guys are willing to share your knowledge and experiences
@Mary Featherston I totally agree that more people should use them, they will definitely help prevent hearing loss. Sometimes it takes losing your hearing though to realise how precious it is. I did wear ear plugs to music events before I lost hearing in my left ear, but only in recent years. As a teenager and young adult I listened to plenty of very loud music (the louder the better) without any hearing protection. I wonder what I was thinking now, and hope it doesn't cause me to lose hearing in my right ear later in life. With my kids I am starting them early with earmuffs whenever we are listening to loud music or doing anything loud in the garden - start good habits early!
@Mary Beth, @Mary FeatherstonThis is the website I looked at when I searched Neuroth hearing protection, it does allow you to select English as a language. I hope that's the right one @VeroNika?
Hi @Little_chooky Caroline,
Happy to reply! :) Oh well, browser-stuff like that happens every now and then... (btw: a little later it turned up again but I had already rewritten it ;) )
Yaaay, so you now some German, that's awesome! :D Well our official language is also "German" but "Austrian German" - and our German is quite different than the German's German - at least spoken. Written it's quite the same and we understand them easily when they talk but our many different dialects kind of give them a hard time! ;)
I sort of hear regular on my right ear - I say sort of as I also have tinnitus on my right ear (due to acute hearing loss in my right ear in 2016 which happened due to Lyme's disease, no detectable tinnitus on my left ear) and, simliar like yours, it reacts to noisy environment, so I'll include tips for that in my top 5 for SSD (for that I am not considering the CI, but rather how it is without it):
1. when talking to people I like them to be opposite or on my right side (so that my "good" ear is closer to them speaking), I am also aware of lightning (wanting there face to be nicely in light, so that I can do lip reading more easily as well as better reading their body language, which also helps), the room itself, carefully choosing where I sit or stand when talking to people (also, like when going to a restaurant I like to be proactive and choose the seat that's best in regards to hearing)
2. letting people know - I feel that trying to understand in noisy environments often is quite difficult at itself and I feel that when I let people know they are more understanding but - somewhat even more important - it eases my personal stresslevel in these situations (however: for important talks I would carefully chose the sound setting, I would not have important talks in noisy environments, or with a lot background noise or in rooms with bad acoustics)
3. In Austria we have a hearing aids and hearing protection company called Neuroth - they make these amazing hearing protection pieces, that are custom made to fit your ear and then you can put little filters in these pieces that will for one protect your ear and eardrums from too much noise and two (which is the amazing thing) will also help with understanding, as they sort of turn down nasty noises while still letting you understand speech clearly as well as letting you enjoy music or so. I use these a lot (I also have one set for my deaf ear, as I feel that I still want to protect my eardrum - this may sound weird to some people, but it's just my way of taking care of my deaf ear too, which is important to me :) ) in like restaurants, in loud cars, when on a plane (not while starting / landing due to the changing pressure, but when at flight hight I like them), train/bus stations, etc. -> AND: for me they come in super handy with my tinnitus, as usually when I'm in loud hearing situations my tinnitus turns up afterwards. When using these for me the tinnitus doesn't get as loud later. -> These handy little Neuroth-Protection-Pieces were somewhat pricey but I love them. Maybe that is something that could help you cope with your tinnitus as well? I'm certain that Australia would probably have something simliar! If you want, I can photograph them for you so that you can get an idea of these things. :)
4. Taking care of my hearing ear. Protecting my hearing ear from loud noises is very important to me. But also taking care of it in the way of getting some "hearing rest" during the day. Like for example when I am on a full day training course, where I have to listen a lot, I like to take the breaks not to talk or listen to others but rather to relax my ear, go to a quiet room, go out in nature (I find the calm of nature and nature sounds very relaxing to my ears), or whatever feels comfortable.
5. Being patient with myself and my hearingloss and aknowleding that with it a regular day takes me more energy than it may take a person with regular hearing. So I like to make sure I get enough "hearing-breaks" and relax my hearing so that I have enough "listening-strength" throughout the day.
I hope you find these top 5 useful - let me know, if you'd like more info (for example on strategies I use to sort of be able to detect the origin of sounds, cell phone, etc.)! :)
In regards to CI stimulus/regular stimulus and how my brain copes: it does just fine! ;) Yes, left cI-ear is a little different but me and my brain don't mind - I feel it even helps me in telling where sounds come from. Also it's not like super-duper-different, it's just that - to me - on my left ear I don't just "hear" sounds I also sort of "feel" them - but it's hard to describe. I know that there still are many concerns out there about SSD and CI and how does it all work - I can only speak for myself, but all I can say is that it work's just awesome and I personally love my CI and would every day choose it again! :)
cheers from Graz, Veronika
Thanks for your reply. Don't you hate it when the browser eats all your typing and you have to try and remember what you said!
Thanks also for your English - I studied German for my whole time at high school but I am ashamed to say I would not know where to start trying to speak it now Is German your native language? I have a feeling there are a few different ones spoken in Austria?
As to hearing loss, I would love to hear your top 5 tips for coping with SSD ! For me the worst thing at the moment is the way the tinnitus seems to react to noisy environments and become even more noisy. Hence I not only have to cope with half (or even less) of the hearing I'm used to but also try and hear over the top of the tinnitus. Do you have tinnitus from your deafness, and is it helped by the CI?
For now I am not sure if I am eligible for a CI - I don't even know what the assessment process involves as I am very new to all of this. I will save most of my questions about living with CIs until I know more about my situation. However I am very interested to hear what it is like having normal hearing in one ear and digital hearing in the other? Does your brain learn to blend the two types of hearing quite well or is it quite obvious each ear is 'hearing' differently?
I am sure I will have heaps more questions but will leave it at that for now!
Hope you are having a lovely weekend