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

[MAvic_South_Oz]

I'd better finish the final chapter, the immediate Post install segment.
This will cover up to now, and moving forward I will post up in regular timeline on the thread.
So . . .

4. Post install

Woke up last Friday morning and all good, still felt normal almost, just tired, slept ok (between 2 hr wake up checks for vitals) through the night, spent some of the 2 hr blocks on the web, slept others.
Yes, an xray this morning to check all ok with electrodes, finished a book I've been reading during hospital waiting room stays the past year, usually just get 10 mins on it, but today was done at last . . . Sir Edmund Hillary "High Adventure" a 1955 copy original, good read.
Also had some mags which I managed to get through, and along with the web, got through without boredom until 1230 when I was wheelchaired down for the xray.
Back to ward, now I can go home.

Well, not quite, after a couple of hours I finally discovered ENT has to go over xray and confirm all ok, and they should get to it by 1600 / 1700.
A long afternoon, still had a couple more mags in reserve, and the web.

Out finally at 1700 and got picked up by the wife, was good to get home.

Still no pain, managed to sleep ok, keeping off the RH side of course, any hiccup hurt deep inside the ear.

Saturday was a different experience.
Felt very disorientated, equilibrium terrible, balance off, light headed and through the day at times a bit nauseous.
Of course the ear and its health affects peoples balance immensely, so knew this could happen and to possibly expect some side effect like this.
Though I thought I had got through ok with nearly 48 hrs behind me.

Unfortunate, as I had to fix a car today !
Dropped of Wednesday before I went in, do whenever I can when out.
Set up cars, gear, couldn't do it, leave it until tomorrow.

Sunday (yesterday).
Wake up and feel similar, but will try again,
It's a slightly hail damaged Subaru WRX sti (to be fixed by PDR) and although a job I might have normally finished in about 5 - 6 hrs, I had to stop now and then and go lay down for half an hour, then half an hour on, back and forth.
During this, I had a Berocca and a Panadol (about the 3rd taken in my life !) and by days end I was up to taking the dogs for a couple of km walk with the missus.
I did get about half the car done, rang the detailer (where it was going next) and the client, no problems, take my time, don't really need until Wed morning now, phew.

Today I feel about 80% ok, so should sail through, but now I'm not booking anything for hail / other car repair until I feel totally ok.
Will do my glass work as it comes in and that will keep me going along with plenty of rest, which I feel I have to admit, I REALLY NEED.

Must be getting old, I feel it right now.

This had better be worth it, I feel it will be.

 

[Atkas]

The Bose SleepBuds 2 somehow helped Atkas, not sure how, or if they might also help others.

These were recommended by my audiologist, who has also had success with other military veterans using them. Previously to sleep I would use tinnitus sound apps/music and the fan is always on for the noise. As we all probably know, tinnitus is basically created by the brain because it feels the need to have a noise there. Not sure about others, but silence is a curse to me. But then there's other triggers...sneezes, baby crying, car keys rattling...from those I'll usually get a huge burst and the ringing intensifies, sometimes enough to double me over or bring tears to my eyes.
Mine is bad enough that at normal listening levels of music for others, I will hear differently because of the exclusion of tones/frequencies. Quite bizarre when you know the lyrics, know the song, but all the harmony is wrong until you turn it up?!
Another thing that certainly helped was giving as much info as possible to the audiologist. Download any one of the frequency generator apps and work yours out if possible. With that I was able to determine my ringing is around 6khz, and using the volume you can bring it up to a level where YOU can start to hear it, meaning below that is what you can indicate to others that you hear...if that makes sense. It was all this info and obviously the knowledge of my career that the audiologist loved and helped us get the best solution first time.

I do hope this can help someone, I know how bad this can be. And I know others that have it worse. This can literally be a "not-so-silent" killer, or be very isolating at the least.

 

[Atkas]

Today I feel about 80% ok, so should sail through, but now I'm not booking anything for hail / other car repair until I feel totally ok.
Will do my glass work as it comes in and that will keep me going along with plenty of rest, which I feel I have to admit, I REALLY NEED.

Must be getting old, I feel it right now.

This had better be worth it, I feel it will be.

Great to hear it's starting to sit well with you. And thanks for keeping us updated and allowing us all to offer our own stories and support you also.

Keep those updates coming, and get the rest you need.
The work will be there waiting for you...unfortunately

 

[MAvic_South_Oz]

Great to hear it's starting to sit well with you. And thanks for keeping us updated and allowing us all to offer our own stories and support you also.

Keep those updates coming, and get the rest you need.
The work will be there waiting for you...unfortunately

So glad I posted this here, obvious there are others out there who know the hearing loss story, and pleased / hope it helps everyone in some way, reading or sharing.

Will do, hopefully every few days I will now do a recap, and leading up to the big day March 15th.

Yes, somehow the hail work inquiries are coming through faster now than even, our big storm hit back in October last year !!
Must be going through the auctions more now as some of them are very badly hit (what we call push for paint jobs).
Still I know this game very well, so can help out with advice and just hope they didn't pay too much at auction, most do.

 

[Deleted member 119987]

The Bose SleepBuds 2 somehow helped Atkas, not sure how, or if they might also help others.
The sound therapy I posted about before sometimes helps apparently, but read it takes quite some time to do so, and many might get frustrated and stop.

Tinnitus must be a curse. ringing, beeping (or is that the balsted controller !), whooshing, many different sounds that various people hear with it.
Now I have a soft ssssshhhhhh in my right ear, probably there all along, and normal hearing I had left masked it.
With cochlear in and hairs damaged, virtually hear a few clicks in that one with an old hearing aid in, so will just wear a left aid for now to help me through a few more weeks to C-Day (cochlear processor fitment).

I tried the sound therapy with hearing aids and at night with white noise machines for probably 2 years. I have very high pitch ringing in both ears 24/7 Sometimes, If I can match the pitches, my brain will concentrate on the produced sound... like a roaring rapids in the river.. etc. but once that noise is gone, back to normal ringing.
I have noticed that the high pitch of the mavic air 2 blades will produce that effect as well. Keeps me flying and in VLOS .
I've learned to ignore it most of the time. I'm still aware that it's there, but its not bothering me like it use to.
I will say this though.. anyone with tinnitus should try any kind of therapy your audiologist suggest and never ever fall for those pill scams promising a cure. I will look into Bose SleepBuds Thanks for the information about them.
They are working on magnet therapy, transcranial magnetic stimulation, but I don't think they are ready for prime time yet. But when they are... I'm first in line .

 

[Deleted member 119987]

I'd better finish the final chapter, the immediate Post install segment.
This will cover up to now, and moving forward I will post up in regular timeline on the thread.
So . . .

4. Post install

Woke up last Friday morning and all good, still felt normal almost, just tired, slept ok (between 2 hr wake up checks for vitals) through the night, spent some of the 2 hr blocks on the web, slept others.
Yes, an xray this morning to check all ok with electrodes, finished a book I've been reading during hospital waiting room stays the past year, usually just get 10 mins on it, but today was done at last . . . Sir Edmund Hillary "High Adventure" a 1955 copy original, good read.
Also had some mags which I managed to get through, and along with the web, got through without boredom until 1230 when I was wheelchaired down for the xray.
Back to ward, now I can go home.

Well, not quite, after a couple of hours I finally discovered ENT has to go over xray and confirm all ok, and they should get to it by 1600 / 1700.
A long afternoon, still had a couple more mags in reserve, and the web.

Out finally at 1700 and got picked up by the wife, was good to get home.

Still no pain, managed to sleep ok, keeping off the RH side of course, any hiccup hurt deep inside the ear.

Saturday was a different experience.
Felt very disorientated, equilibrium terrible, balance off, light headed and through the day at times a bit nauseous.
Of course the ear and its health affects peoples balance immensely, so knew this could happen and to possibly expect some side effect like this.
Though I thought I had got through ok with nearly 48 hrs behind me.

Unfortunate, as I had to fix a car today !
Dropped of Wednesday before I went in, do whenever I can when out.
Set up cars, gear, couldn't do it, leave it until tomorrow.

Sunday (yesterday).
Wake up and feel similar, but will try again,
It's a slightly hail damaged Subaru WRX sti (to be fixed by PDR) and although a job I might have normally finished in about 5 - 6 hrs, I had to stop now and then and go lay down for half an hour, then half an hour on, back and forth.
During this, I had a Berocca and a Panadol (about the 3rd taken in my life !) and by days end I was up to taking the dogs for a couple of km walk with the missus.
I did get about half the car done, rang the detailer (where it was going next) and the client, no problems, take my time, don't really need until Wed morning now, phew.

Today I feel about 80% ok, so should sail through, but now I'm not booking anything for hail / other car repair until I feel totally ok.
Will do my glass work as it comes in and that will keep me going along with plenty of rest, which I feel I have to admit, I REALLY NEED.

Must be getting old, I feel it right now.

This had better be worth it, I feel it will be.

I am glad that everything is going along smoothly for you with the exceptions of side effects. Like you said, unfortunately the ear does do a lot with balance and awareness.
Hopefully, those effects won't last much longer. Thanks for all the updates. Your experiences and the way you communicate them here should be published in other places as well
I just found out today that using Xylene can lead to hearing loss as well. Didnt know that. I used my fare share of that years ago.

 

[MAvic_South_Oz]

unfortunately the ear does do a lot with balance and awareness.
Hopefully, those effects won't last much longer.

Me too, I am an avid bushwalker, do lots of local day walks with mates, lots of interstate and overseas epic walking trips, and we have some great treks planned for the coming years.
I would miss that tremendously if balance was too bad to do it safely.

We'll see, hopefully it's just a passing thing, today is a lot better and will take a day at a time now.

I just found out today that using Xylene can lead to hearing loss as well. Didnt know that. I used my fare share of that years ago.

Yeah, that's highly ototoxic, and one of the first cases I read about was a large Brazilian printing company (they use Xylene a lot in the inks) was studied, 2 groups, one not exposed to certain chems but exposed to noise, and another exposed to both the chems and noise, and the double exposure group had 11 x the average loss over the extended period.

Ototoxicity - Wikipedia

Benzene is an interesting one, lots of studies on petroleum industry workers having issues with ototoxic hearing loss.
Lots of common drugs too, pesticides, but for many workers it's the chemicals that are an issue.

I discovered the term and background on Ototoxicity in about 2007 / 2008 when my new problem hit (extra 10% loss in a year), and my then audiologist said she'd done her thesis at uni on ototoxic chemicals, so my discovery of that subject started.

Still have a 'Hearing' folder full of 2003 - 2008 era reports on ototoxic checmicals, when it started to become very well known.
Also loads of MSDS for many of the chems from the time, and no mention of ear related issues.
Apart from (interestingly in your case) for Xylene, it says could cause ringing in the ears.

Nothing at the time about ototoxicity on our state govco workplace safety websites either, there is now thankfully.

 

[MAvic_South_Oz]

Yesterday MUCH improved over the weekend.
Still, gave real work a miss and did some light duties.

This morning almost feel normal, but yet to get up so we’ll see.
I can get this car fix done today I’m pretty sure.

So Tuesday, 3 weeks today until I see how good this new gear in my head is

 

[MAvic_South_Oz]

Tuesday went well, finished the car I had to do, and felt pretty good.
Wed very much improved again, today almost 100% and did some posts in the back yard for a main beam for bearers where I'm putting some decking through the back garden.
No more cars until Sat morning !

Tomorrow (Friday) back to hospital for a wound check, think the stitches are all but dissolved and out now, felt one come out an hour ago when I touched it.
The wound looks clean, healing well, not sore at all.

Tomorrow morning I will see one or the other of the surgeons, maybe both, and they can let me know what's next . . . another check, or just to the audiologists in about 2-1/2 weeks time for the processor fitting and turning on the unit.

 

[Deleted member 119987]

Tuesday went well, finished the car I had to do, and felt pretty good.
Wed very much improved again, today almost 100% and did some posts in the back yard for a main beam for bearers where I'm putting some decking through the back garden.
No more cars until Sat morning !

Tomorrow (Friday) back to hospital for a wound check, think the stitches are all but dissolved and out now, felt one come out an hour ago when I touched it.
The wound looks clean, healing well, not sore at all.

Tomorrow morning I will see one or the other of the surgeons, maybe both, and they can let me know what's next . . . another check, or just to the audiologists in about 2-1/2 weeks time for the processor fitting and turning on the unit.

Glad everything is going well.

 

[MAvic_South_Oz]

After the positive report Thurs late pm, I woke up Friday ok I guess, but by 0930 equilibrium was screwed up, very unbalanced, dizzy, again a bit nauseous.
Got the wife to drive me the the medical appt and come up with me, managed to hobble along holding onto whatever I could to stay steady.

Didn't get to see either of my surgeons, but the doc I saw says normal, fluid build behind eardrum causing this, should clear with time (days - weeks).
Equalising the ears I can hear like water bubbling when I pop them, just the right cochlear side.

The wound is healing up very well though.

Managed some sleep in the afternoon, and felt somewhat better later.

So another check up in probably a week, I will get an appt letter sent in the next day or three.

At least I woke up this morning (Saturday) feeling fine, and did the 2 small vehicle repair jobs I'd booked in, and they went well.
I'll skip doing some more backyard deck building today, just rest and I'll do that tomorrow.

 

[Atkas]

Mate, great to hear it's generally going in the right direction. Thanks for the updates as always.

 

[Deleted member 119987]

After the positive report Thurs late pm, I woke up Friday ok I guess, but by 0930 equilibrium was screwed up, very unbalanced, dizzy, again a bit nauseous.
Got the wife to drive me the the medical appt and come up with me, managed to hobble along holding onto whatever I could to stay steady.

Didn't get to see either of my surgeons, but the doc I saw says normal, fluid build behind eardrum causing this, should clear with time (days - weeks).
Equalising the ears I can hear like water bubbling when I pop them, just the right cochlear side.

The wound is healing up very well though.

Managed some sleep in the afternoon, and felt somewhat better later.

So another check up in probably a week, I will get an appt letter sent in the next day or three.

At least I woke up this morning (Saturday) feeling fine, and did the 2 small vehicle repair jobs I'd booked in, and they went well.
I'll skip doing some more backyard deck building today, just rest and I'll do that tomorrow.

Try to take it easy for a while. Let things settle. If you can. Me personally, I am a bad patient. I try to do things more quickly than I am really supposed to .

 

[MAvic_South_Oz]

Mate, great to hear it's generally going in the right direction. Thanks for the updates as always.

Thanks mate, I'm still positive, it's just that nothing usually stops me, so kind of frustrating.
Just hoping the info might help anyone getting a cochlear some day.

Try to take it easy for a while. Let things settle. If you can. Me personally, I am a bad patient. I try to do things more quickly than I am really supposed to .

Thanks, and I know you’re right.
I simply love work too much, but am definitely going slower now.
I think the ear, fluid, balance thing would be with me either way for (hopefully) just a short time.
Feel good this morning again, so we’ll see how it is over the coming week, if no relapses I might be past that stage.

 

[MAvic_South_Oz]

Ok so no further problems since Fri 25th Feb balance issues, been almost 100%, still some fluid inside the back workings of the ear . . . will find out where this is on the next follow up, think it might be inside the cochlear).

3 days of this equilibrium problem, no particular pattern, expect it's over now.

Working full on as I like is great, so much hail repair work coming through, along with general bodywork and my other glass biz stuff as usual.

I have a follow up surgery check next Thurs 10th, the then the following Tuesday 15th is the big day !!
Processor and mic fitting, turning on, setting up for initial settling in . . . then over 3 weeks, 2 more appointments to tune it up and get the volume etc all good as I adapt.

More to come in the next week and a half.

 

[Deleted member 119987]

Ok so no further problems since Fri 25th Feb balance issues, been almost 100%, still some fluid inside the back workings of the ear . . . will find out where this is on the next follow up, think it might be inside the cochlear).

3 days of this equilibrium problem, no particular pattern, expect it's over now.

Working full on as I like is great, so much hail repair work coming through, along with general bodywork and my other glass biz stuff as usual.

I have a follow up surgery check next Thurs 10th, the then the following Tuesday 15th is the big day !!
Processor and mic fitting, turning on, setting up for initial settling in . . . then over 3 weeks, 2 more appointments to tune it up and get the volume etc all good as I adapt.

More to come in the next week and a half.

Good that you are recovering well. Looking forward to hearing (lol) how your future appointments turn out.

 

[Drone_Pilot]

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.

Can I ask do you have meniere's disease?

 

[MAvic_South_Oz]

Can I ask do you have meniere's disease?

Had to Google it.
No not at all (afaik), mine is purely NIHL, 42 or so years of work noise.

Meniere's seems like normal hearing loss but a lot more severe in other issues like the balance / nausea.
Thankfully no more episodes of that since last Friday.

I hoping it’s not something you’re (or close relative is) dealing with.

 

[Drone_Pilot]

Had to Google it.
No not at all (afaik), mine is purely NIHL, 42 or so years of work noise.

Meniere's seems like normal hearing loss but a lot more severe in other issues like the balance / nausea.
Thankfully no more episodes of that since last Friday.

I hoping it’s not something you’re (or close relative is) dealing with.

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

 

[Deleted member 119987]

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

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."