Anyone here with cochlear implant(s) / hearing aids ?

[MAvic_South_Oz]

Yes I get very bad vertigos of spinning and a lot of throwing up and balance issues lose my hearing temporarily from one ear when I get the attacks of meniere's disease. I am very glad for you and I pray you do well thank you for your response

Oh no, sorry to read you’re dealing with this.
I noted in Google results that there’s no cure but treatments that help, mainly anti vertigo medications.
I hope these work when needed for you.
Praying back your way they can some day make a breakthrough with better treatment or a more permanent cure.

I have this life philosophy that one should always have a positive view of things that come our way in life, as no matter how bad things seem there is always someone somewhere in a worse situation / dealing with a lot more.
I think it has helped me immensely in life to know this.

2 Fridays back at first surgery follow up, I was having surgery related balance / nausea issues, wife with me as I had no chance of driving safely that morning.
Sitting there feeling a bit of a misery guts, waiting for doc to call me in.
A young guy passed by being pushed in a wheelchair through the waiting area.
He had some sort of motor neurone type of disease, and pretty much fully dependent on his carers (most likely his family).
Like a good slap as to how lucky I am, knowing my problem was more or less very temporary.

Hopefully more will be discovered about such things in the near future.

 

[Drone_Pilot]

Are you controlling it with diet and/or drugs? Some can and some have to have surgery.
A quote from the national institute on deafness - "Scientists estimate that six out of 10 people either get better on their own or can control their vertigo with diet, drugs, or devices. However, a small group of people with Ménière’s disease will get relief only by undergoing surgery."

Yes I've been taking medication but this last attacks happened 5 days in a row I'm under steroids for the next two weeks

Are you controlling it with diet and/or drugs? Some can and some have to have surgery.
A quote from the national institute on deafness - "Scientists estimate that six out of 10 people either get better on their own or can control their vertigo with diet, drugs, or devices. However, a small group of people with Ménière’s disease will get relief only by undergoing surgery."

Yes I've been taking medication and I've been able to deal with one attack every so often but this last attacks were back to back for 5 days straight. So the doctor put me on steroids for the next 2 weeks. Some people will have to get their balance cut from the effect ear that is the only way they will resolve the issue I pray I do not have to go through that.

 

[MAvic_South_Oz]

Well, the 3-1/2 weeks went quickly since the surgery, and I now have the cochlear implant all operating.
I'll recap on that below in a sec.

Firstly, I just wanted to note that over the weekend I accidentally put both iPods in to take a phone call, and noticed putting the right one in there was the faintest sound perception . . . meaning either some of the cochlear hairs survived the electrode insertion and perhaps recovered a little, or the fluid may have affected that little remaining hearing and obscured it.

So definitely better now using the iPods for phone calls, and the cochlear earpiece etc don't get in the way at all when using the iPods, putting them in or taking them out.
Likewise, leaving the cochlear on seems to not bother me with the ambient 'noise' that is putting into my brain via the direct input.

The iPhone will be paired with the cochlear next session in a week, so I can get used to the sounds I'm hearing, and be more prepared to adapt to that.
I might even wait a while to use the pairing, for when I get the left hand assistance hearing aid device, that will allow me to get both normal hearing aid type input, along with the new sounds from the cochlear.

So just a few little items here to allow people to see the components . . .

What's put into the head . . .



and the size of this . . .



The electrode array is in its straight form here.

So this was put into my head back on Thursday 17th Feb.
None of this is seen from the outside.

I'll post the xray I had post surgery in another post shortly, shows where it all sits.
____

Ok, the processor fitting and turning the cochlear on yesterday Tuesday 15th March.

This is the processor and microphone setup . . .



Went through the unpacking of a very neat backpack supplied with the system, all included in the cochlear installation etc.

Battery module and a couple of packs of the disposable batteries, 2 rechargeables, remote, spare bits and pieces, filters, ear hooks, special items, a drying unit to use nightly to keep the electronics moisture free, zip up case to hold cochlear and other hearing aid device / travel needs.

The device uses the larger hearing aid type 675 button batteries, 2 of them though, cochlears chew batteries apparently.
2 of these fit into a module that slides off / on the back of the microphone device.
Should get a few days out of these, on about a day now with the 2 batteries fitted yesterday.
They also come with 2 rechargeable modules, which give a good long day each, and a nice charger to use for these.

So with the one right ear cochlear, pretty well set up for a regular routine of using these.

The session setting them up was as expected, similar to new hearing aids, but a little different at times.
The external parts fit and are nicely secure over the ear, the coil / magnet just sits over the internal antenna / magnet.

The audiologist does some checks to see how many electrodes are actually working, as sometimes some are lost to damage during insertion, although this doesn't usually affect the assistance terribly much.
She was pleased to show me the diagram with all 22 electrodes functioning

So some setting up pairing to a remote, where I can change up to slightly stronger programmes, and a final one muting it . . . plus you can do a 10 stage volume up / down in any of those to suit fine tuning.

Then she said she'd turn it on now and for me to tell her what I hear . . .

Ok, cochlear is different, kind of expected this, it's not sound as you or I know it, but electronic signals directly to the nerves in the cochlear that takes those signals to the brain.
The brain has to learn what the heck it's 'hearing', and what is sent can vary from person to person, even the sounds and volumes are different between recipients.

But this is REALLY different, kind of like a voice synthesiser sound they people have fitted to replace a voice box, lost to cancer or whatever . . . a little like Dalek speech from the Dr Who series.
Probably a little less clear though !!
So yeah it will take some time.

The audiologist made some basic vowel and consonant sounds, and yes they are 'played' in different tones / noises, squeaks etc in what seems like my ear, but really it's from or within the brain.
Very odd sensations as much as sounds.
Scratching on her desktop, unwrapping things from the gear held in crispy plastic, all quite discernable.
Some words are very distinguishable.

Watching youtube vids, where I can see someones lips moving, subconsciously read that and yeah I can discern some words, will pick more up as time goes by I'm sure.
Typing this, I can hear a series of squeaks high tone as I hit the keys, likewise the indicator click on the car module when using turn signals, that is kind of very satisfying for some reason.

I just have to wear it as much as possible now, talk to people using combination of my residual hearing left ear, cochlear, and lip reading to work through what's being said, and let the brain learn to work it all out.

More to come perhaps between now and next appointment Mon 23rd if anything comes up mentionable . . .
Other wise will update on next visit process.

edited the usual 'too fast a typing' errors

 

[MAvic_South_Oz]

My Xray . . . you have to look to the 1/3 lower corner to see where the end of that squiggly wire, where fine electrode array curls into the cochlear, all those little dots.

Click to view full size image . . .




Have to find out what that ball electrode does, it might be an Earth, lol !!

 

[MAvic_South_Oz]

Update.
Found out that other electrode is bone conduction, it picks up that sort of sensation too.

Since the last update, I have had 3 main events . . .

1. This Tues 22nd, first follow up, 1 week after the turning on.
Adjustments really helped with bass and sounds generally a lot better now.
Still was very handy to have lip reading ability, but with stupid mask mandates still in place it was still a battle at times.

Got a call later in the afternoon, the left ear assistance hearing aid has come in !
Typically just too late to get that in for the appointment above, but scheduled for setting that up tomorrow.

2. Wed, hearing aid fit up.
Now this makes a huge difference, enabling the left ear with decent low to mid range hearing pick up a lot more, and then the cochlear seems to make more sense, kind of confirms what I'm hearing in those clicks and tones.
It should help learning the sounds (or rather signals) I'm getting through the cochlear.

The regular audiologist managed to get me a bluetooth TV streamer to allow that to stream directly to bother hearing aid and cochlear, not in a hurry to set that up, don't watch much TV nowadays.

Couldn't pair up the two hearing devices, this has to be done with the cochlear software.
Then I can stream to it . . . phone calls, music, tv etc and it will go into both devices.

So, I make call the hospital audiology section, and what do you know, they have a cancellation for tomorrow at 1100

3. Pairing up devices, today Thurs 24th.
Easy job, and the audiologist I was with Tuesday for adjustments does this, she runs me through all sorts of menus in the extra app for the hearing aid, and shows me a shortcut for the iphone, which opens up a control panel.
This allows me to adjust programs, volumes, bass, treble, quite handy on the fly.

The phone calls seem pretty clear !
And that is probably the highest priority I had, to enable me to make business etc a little easier to do.

Next step is the second follow up and finer tuning as needed in 2 weeks today, and coinciding same day a few hours later with a cochlear surgery follow up, to see how that has finished up . . . should be last post surgery visit I think, the wound has healed up nicely, think the doc just wants to see how I'm finding it all too, and maybe check if I have had any more problems with fluid around the ear canals etc.
I haven't had anything really noticeable with that for a few days at least.

Main thing now wear them as much as possible, keep the learning curve going, source probably a remote microphone, a small device about half the size of a matchbox that can be clipped onto a shirt or placed on a table near someone, their voice will stream to the devices when activated.
Will probably be awesome for the car, wife sitting next to me etc, and help overcome road noise etc.

More to come when I have some new feedback.

 

[MAvic_South_Oz]

Been a busy few weeks.
Still getting advances in the cochlear input, understanding speech and other sounds.
Maybe every few days I can notice a positive improvement, especially one on one conversation, watching videos on YouTube, or streaming music etc.

Work has been continuous, and another good cochlear adjustment done a week ago.
Several new progammes to allow for different settings put in place, so can scroll through to reduce background noise in different environments, or at home I can let it work at full sound spectrum.
There is also an option to have just the sound from forward 180 degree zone to cut out noise behind.

Several accessory devices ordered, that work with both the cochlear and assistance hearing aid simultaneously.
2 different microphones, a micro mic someone can wear on their shirt / collar and this transmits their voice stright to my devices, handy on the car, or one on one in a noisier place.
The other is a multi mic, a little larger device which can do the same thing, but also when laid down on a table automatically transmits multiple voices at say a dinner table, or meeting etc.

The other device is the phone clip, which allows true hands free phone use, so I can leave my phone away when busy, or in the car etc.

The micro mic has come in and works well, only had it a day some still experimenting with that.
The other 2 devices should be in next week, possibly mid to late week with Easter Monday thrown in.

Another check up and adjustment in 2-1/2 weeks, then I'm off to Queensland for a few weeks, visit and work with one of my brothers, fly the drones as much as possible, plenty of places I've had in mind to check out for a while.

 

[MAvic_South_Oz]

Not much to report, have had a few update sessions where they tune up perception of signals as my brain adapts to the new ‘sounds’.

In Queensland now, a state about 2100km drive NE, not sure maybe 1900km flight.

Helping brother in his auto crash shop for a few weeks.
Can’t wear hearing devices effectively, too much noise so just wear class 5 earmuffs most of the time.
Think this will be my last time doing this, as much as I like auto repair (40+ years off and on), it’s just too hard to do with hearing loss effectively and keep in touch with my clients by phone.
Missed calls through the day.

Mark F sent me this link, I wonder if hearing aids and even cochlear will be made obsolete in the coming years ??

Reversing hearing loss with regenerative therapy

The MIT spinout Frequency Therapeutics uses a new kind of druggable regenerative therapy that targets progenitor cells to create hair cells of the inner ear and reverse hearing loss.

news.mit.edu

You can see type of result in the before / after first research stage below, left pink areas missing where cochlear hairs are dead, right side where pink shows them regenerated, in particular in the larger outer areas where the high tone goes particularly quickly with noise.

More later on progress.

 

[MAvic_South_Oz]

Tune ups done 2nd May, and most recent one 6th June.

They go through the 22 electrodes in turn, putting that signal into the device, turning it up until you tell them it's at a loud but comfortable level.
It's kind of like turning up hearing aid output, but there's no sound, only signals.

Every tune has been somewhat better in how it works, but particularly after the last tune, I've noticed a huge improvement in truly understanding speech more, even with masks !
You still rely on seeing peoples faces somewhat, to read lips (subconsciously), and noisy environments, big groups of people etc, are still challenging, but these are for many people with normal hearing ability too.

Next appointment is 3 months from early June, sometime early Sept.
The visits get less frequent, until they are happy they've done all they can in setting up.
Very impressed with the efficiency of the audiology people here.

 

[Mavic Merrick]

Just in hospital ward after having cochlear implant surgery today.
Went well, should be home tomorrow.

3-1/2 weeks wait for processor fitment and turning it on.

Very open to hearing (no pun intended) your hearing loss experiences, and sharing my journey in more detail.
I believe the info here for prosperity would help many others in the future.

Not easy posting at the moment, see threads I’d like to help out somewhat, but just hard on the phone pad and seeing right with glasses skewed a bit on bandaged head !!
Oh heck, don’t make me laugh

More in the coming days and beyond.

Editing . . . constantly while I do updates, will link below to the post containing that section info.


1. (below) My background story on my hearing loss. Preventative advice.

2. Hearing aids through to Cochlear. < link to post

3. The Cochlear surgery. < link to post

4. Post install < link to post

Turning them on, tuning, results and my personal experiences, I will simply post to timeline when / as things happen.


1. Background The story begins when I left school at 17yo, took up a trade as a panel beater, someone who fixes accident damaged cars, restores car panels, also picked up spray painting fairly easily, so I could do full jobs start to finish.

After 12 years my wife said one day I should have a hearing test as I was struggling sometimes in the car etc hearing her.
Did so, and found I had a 14% loss, quite a high loss at just shy of 30yo.
It was mostly very high frequency loss, due to heavy use of grinders, sanders etc.

In those early days, there was no OH&S (occupational health and safety) as such in many places, even trade school didn't mention it or have hearing protection there.

So I got onto a private workplace insurer and obtained a hearing aid, a single in ear type, right side as this was the stronger ear at the time.

I recall walking out of Laubman & Pank audiology store in Rundle Mall Adelaide, and having to turn it off with all the lades high heels clicking on the pavers outside !

This was about 1992 and these devices were cheap, would have been lucky to last a year, and for the next 14 years I didn't have anything to help combat the loss of hearing.

Also, left the crash repair trade full time at that time, though my hearing did deteriorate further due to me doing whatever I did work wise to look after family etc.

Still had / have all my tools, and of course would help family friends with their car repairs when they came up.

During this time, I did use hearing protection when I used noisy equipment in general, but there were situations in some of the contract shutdown work I did that was probably not good for my hearing.
Confined spaces etc where earmuffs were unsuitable, the small plugs are hopeless protection.

In 2007, when taking up a particular job I was determined to make the best of it with a new set of hearing aids, purchased myself, only $2k or so at the time, still a lot for 16 years ago.

They were fine and helped a lot with bluetooth to phone ect.

I was struggling after a year, had a test and found a loss in that 12 months of another 10%, which was really a shock.
Shortly after I discovered this was due to ototoxic chemicals I was using in that job.

So now my only option was to get much stronger hearing devices, much more expensive too, so went through our workplace insurer Workcover to get these with future medical for updates periodically.

These new aids were for both ears, and around $10k a pair, so it was good to get them through the insurance fund, was a fight though !

Stopped using those chems, religiously wore hearing protection class 5, hearing really didn't deteriorate more than a % or so in the next 3 - 4 years.

Left that job in 2012 to do my own thing full time again in biz, so just on 50.

From 50, most peoples hearing naturally declines slowly, so over perhaps the next 4 - 5 years I was having more and more trouble getting the best from the hearing aids.

In that time I got a new pair, but really only wore them for a short time, the hearing aid journey was over as they just couldn't cope with the high frequency loss any longer.

Hadn't worn them for the past 5 years or so.

My loss now is about 73 - 74 % bilateral, mostly high end frequency, regarded as profound hearing loss.

I'd like to say to people now . . . protect what hearing you have, as best possible.
Once the hairs in the cochlear lie down when damaged by noise, that's it, it's all over, they die and don't come back.

Wear earmuffs, good ones like class 5 level.

If you are 30 - 40 yo or even beyond, it's certainly worth making a start looking after your hearing.

Younger people, please be aware of loud places, concerts particularly, keep your music through earphones / ipods etc down a bit, that will kill your hearing as good as industrial type noise, gunfire, and anything that makes you grimace a bit from the level of discomfort.
Lawnmowers and trimmers, all those petrol driven things, yes drag cars.

I was told too if your parents had a hearing loss, you are more likely to suffer from it.
It is hereditary in a way.
My dad was a blacksmith, hammer and anvil work etc, and he was deaf as a post in his latter years.

Ok, enough background, can answer any questions re this, happy to hear your story.

Next chapter will be a new post in this tread, and linked from the contents above when done.

Thanks for reading, just posting up chapter 2, will do some more in the coming days.

I don’t have hearing problems but I am super happy for you and how you will be able to hear again

 

[MAvic_South_Oz]

I don’t have hearing problems but I am super happy for you and how you will be able to hear again

Thanks mate.

I see you're young, and now whenever I meet anyone young, or working in places where NIHL (noise induced hearing loss) is a risk, I try and at least offer this advice . . .

Look after your hearing through your life, career, especially if you will work in a noisy environment, or around ototoxic chemicals.

Lots of loud concerts, ipod / headphone use too loud can also impact your hearing long term.
If you have any relatives, dad, granddad, uncles etc that have NIHL, you are likely more at risk.

I still know lots of people my age I worked with in my youth, still in the trade as I was / am partially now still, and they do have slight hearing problems, but no where as bad as mine . . . not even 1/4 most likely, but any loss makes some things in life more difficult.
It can be isolating mainly, frustrating at times.

So, thanks again, I truly hope I can get the message out there when I can, and stop even one other person having the issues I have had for perhaps 20 - 30 years, half my life it's been deteriorating to the stage it is (was) at now.

But let me say the medical stuff they can do now has changed my life in a very positive way, and I'm so grateful.

 

[MAvic_South_Oz]

8 months since implant surgery.
7 months since the cochlear switched on.

Going really well.
Since my last post and the early June tune up, I’ve had a further adjustment Sept 6th.
The adjustments are getting more minor each time, indicating things are getting towards the most beneficial outcome.
The next appt is 6 months away early March.

So yeah, the RH cochlear and LH assistance hearing aid are working really well together, and making a huge positive difference in my day to day life. Ml

There are still situations where it’s hard to communicate.
Loud environments like busy restaurants, large groups where many are speaking . . . but talking to many others with more normal hearing they say they also have similar trouble.
So ultimately I’m feeling pretty comfortable now with them and the help they provide.

Anyone considering cochlear or hearing aids, my experience is it will likely make positive changes, and happy to follow up with any questions in the thread in the future.