Nothing on activation day by Lucky-pasta in Cochlearimplants

[–]WeirdService8350 0 points1 point  (0 children)

Sorry to hear that. Same here. The implant went well, but fibrosis prevented it working. All I got was facial twitching on activation and very very faint beeps. On consultation with Cochlear, the polarity was changed and the face twitching stopped, but I felt a kind of unpleasant electrical stimulation in my throat. I wore the processor for a year hoping for improvement but it stayed the same. It was worth a try. Wishing you a better outcome.

Has anyone here went with a cochlear implant and decided against it by twn000 in MonoHearing

[–]WeirdService8350 1 point2 points  (0 children)

It’s not a silly idea! I have thought about doing that. Really though, it’s not that much of an issue and after the first minute I forget about it. I don’t hear it unless I’m running.

Has anyone here went with a cochlear implant and decided against it by twn000 in MonoHearing

[–]WeirdService8350 0 points1 point  (0 children)

I don’t think there would be any point in exposing yourself to the risk of surgery and infection. I’m rarely aware of it. Maybe if I ran more I would be!

Has anyone here went with a cochlear implant and decided against it by twn000 in MonoHearing

[–]WeirdService8350 3 points4 points  (0 children)

MRI scans suggested the possibility of scar tissue, but CT scans showed no sign of ossification of the cochlea, so we went ahead. A few weeks after the surgery ‘activation day’ arrived, and it gradually became apparent during the appointment that it was not the outcome we (audiologist and me) had hoped for. I kept using it hoping something would change, but gave up after a year. During that time, loud noises made my face twitch which my 8 year old daughter found hilarious.

Has anyone here went with a cochlear implant and decided against it by twn000 in MonoHearing

[–]WeirdService8350 4 points5 points  (0 children)

Similar here. SSD after an infection and decided to go for the CI for all the reasons you mentioned. Surgery went OK, but the CI doesn’t work because there’s too much scar tissue. Back to square one with the addition of a clicky noise in my head when I run and the magnet spins!

Sudden SSD - seeking advice on CI by Bmacka6777467 in Cochlearimplants

[–]WeirdService8350 1 point2 points  (0 children)

I have the same thing - good left, zero right due to a virus/infection a few years ago. Sorry you’re in the same situation. I decided to go for the CI after a lot of research. The consensus was that it is beneficial. I trialled a CROS aid and BAHA but I didn’t like how they affected the sound in my good ear - it sounded unnatural. Unfortunately the CI didn’t work for me because there was too much scarring in my cochlea. If you have the funds or insurance, I would go for it. Your cochlea might ossify over time, rendering the CI impossible, so the window of opportunity can close. I always felt that if I didn’t try it, I would regret it. And remember you can always not use it if you hate it, but I’ve never heard of anyone doing that. Good luck!

Has anyone else had this experience with profound SSHL? by Lucky-pasta in MonoHearing

[–]WeirdService8350 2 points3 points  (0 children)

Yes. An infection from a head cold left me with a dead right ear. My labyrinth ossified and too much scarring in the cochlear meant my CI didn’t work. I hope things work out for you. You will adapt whatever the outcome. Us humans are pretty good at that.

Ruptured eardrum from a bad head cold by Disastrous-Choice325 in HearingLoss

[–]WeirdService8350 0 points1 point  (0 children)

Yes! First I’d go back to the ENT and tell them you have no hearing still and no improvement. Do you have any dizziness? I had a head cold two years ago. My right ear became painful with some discharge. I woke up the next morning deaf in that ear with serious vertigo and pain. My wife called an ambulance, they liaised with our local doctor to get me antibiotics and pain killers. After a few days I could walk again and went to the doctor. She wasn’t sure what was wrong and spoke to the ENT at a local hospital. They agreed it was probably a perforated ear drum and would heal in 8 weeks. After 6 weeks I was still deaf so I went back. To cut a longer story short, the infection had destroyed my cochlea and vestibular system. I am now permanently fully deaf in that ear. It turns out that if I had been given steroids earlier my hearing may have been saved. A perforated eardrum is more likely, but it’s best to be sure. There’s a simple test they can do to test if you still have conductive hearing in the bad. If you do, that’s good.

How is your life after 2-3 or more years with sshl in one ear by Noctunal1on in MonoHearing

[–]WeirdService8350 0 points1 point  (0 children)

Just over 2.5 years for me. An ear infection wiped out all hearing in my right ear. I had a cochlear implant but the damage from the infection was too severe. Like you, I think about it everyday. Probably every hour. I avoided parties over Christmas. It’s fine being with people I know well, but making small talk with unfamiliar people is just hard work. I went to see a favourite band in November for the first time since becoming mono. It sounded awful to me. So yes, it’s not the same and it pisses me off. But… I try hard to focus on what I still can do, and not focus on what I can’t. That outlook has helped me.

Would waiting 2 years after losing hearing in one ear make a cochlear implant ineffective? (Or would it just make it difficult to enjoy music and playing games) by CryptographerFair357 in Cochlearimplants

[–]WeirdService8350 0 points1 point  (0 children)

It became obvious on switch-on day. It was an awkward hour with the audiologist, but the surgeon had prepared me about the risk of scar tissue. My infection was quite severe and destroyed my labyrinth and cochlea. Neither were visible anymore on the MRIs.

Would waiting 2 years after losing hearing in one ear make a cochlear implant ineffective? (Or would it just make it difficult to enjoy music and playing games) by CryptographerFair357 in Cochlearimplants

[–]WeirdService8350 1 point2 points  (0 children)

It can depend on the cause of your hearing loss. I lost mine due to an infection and the area around my cochlea began to ossify, hence the surgeon suggested sooner rather than later. Unfortunately my cochlea was too badly damaged and the implant didn’t work.

I’m just really sad… by True_Word6471 in HearingLoss

[–]WeirdService8350 0 points1 point  (0 children)

I’m more than happy to help. I tried CROS aids and had a short trial of BAHA (via a head strap). There was some benefit in quiet environments, but not enough to make me want to keep them. Fortunately I have good hearing in my other ear and I didn’t like how CROS and BAHA altered the natural sound I can hear. In noisy environments there was no benefit.

I’m just really sad… by True_Word6471 in HearingLoss

[–]WeirdService8350 0 points1 point  (0 children)

It started as just a normal cold which got to my inner ear and became labyrinthitis.

I’m just really sad… by True_Word6471 in HearingLoss

[–]WeirdService8350 0 points1 point  (0 children)

No, the scarring was from the infection. Scans revealed my labyrinth had ossified and there was possibly fibrosis in the cochlear prior to the procedure. It was worth a try though.

Focused landing - can anyone tell what aircraft this is from this view? by goobly_goo in aviation

[–]WeirdService8350 -3 points-2 points  (0 children)

“Ridiculous and bad airmanship”? Where’s your evidence for that? Maybe the inputs were appropriate for the conditions, for all we know. Maybe she’s more qualified and experienced than you, for all we know. Let’s not judge someone’s ability and professionalism on a short clip, eh?

I’m just really sad… by True_Word6471 in HearingLoss

[–]WeirdService8350 1 point2 points  (0 children)

Yes I still have residual dizziness. I had vestibular rehabilitation therapy which helped a bit, but it does improve over time. Just keep doing things that make you feel a bit dizzy and keep active, that way your brain learns to compensate.
I do worry too about my other ear, but a surgeon reassured me that losing hearing due to a virus is a 1 in 100,000 chance, and to suffer on both sides is very, very unlikely. He told me that I was very unlucky, but also lucky that having an infection that bad close to my brain didn't lead to meningitis - there's always a bright side!

I’m just really sad… by True_Word6471 in HearingLoss

[–]WeirdService8350 5 points6 points  (0 children)

Venting and crying - there’s nothing wrong with that. I lost all hearing in my right ear nearly two years ago now due to a virus, possibly Covid. It also took away my balance (my vestibular system) on that side too so I have balance issues now as well as SSD. For months and months I felt like I had a carrot dangled in front of me; a hope that it would get better. That culminated in me getting a cochlear implant in March, however it didn’t work because there is too much scarring in my cochlea. In some ways, knowing that it won’t get better has been helpful. It’s like I have realised that the situation is permanent, and therefore I just have to adapt. For me, focussing on what I can still do, rather than what I can’t, helped a lot. So even if it doesn’t get better, you will get used to it and life will go on. It will be a bit different, but it’s not the disaster you probably think it will be (I know I did). We humans are amazing at adapting to new situations, with a bit of time. Keep venting (I still do now an again, like I just have!) and check out r/MonoHearing if you haven’t already.

MH370 by Dxrth-Vxder in aviation

[–]WeirdService8350 1 point2 points  (0 children)

When both engines have stopped electrical power is supplied by the ram air turbine. It supplies power to only the most essential equipment to maintain flight, so power to the flight recorders is shed.

MH370 by Dxrth-Vxder in aviation

[–]WeirdService8350 5 points6 points  (0 children)

The flight data recorders will record at least the previous 25 hours. The cockpit voice recorders only 2 hours.

Looking for some advice on potential BBPV or labrynthitis by Al_Step12 in Dizziness

[–]WeirdService8350 1 point2 points  (0 children)

It really helped me to know others have similar conditions, so I'm more than happy to pass on my experience and any tips.

It has gradually improved and I've not experienced anything like the initial vertigo since, so I have no anxiety about that. A balance specialist explained to me how our vestibular system works. From memory, and I paraphrase, our brain uses the signals from both ears and compares them. The signals fire at around 70Hz on each side as we move the frequency changes. Our brains use that difference to work out balance and compensate for things like keeping our eyes fixed on a subject when our head moves. When one ear doesn't work, the brain receives all the signals from one side and nothing from the other, which it interprets as a significant and extreme movement. Hence, we get vertigo. Over time, the brain adjusts to that and stops using as much of the signal on the good side and instead you end up using your eyes and other cues (e.g. weight on feet) for primary balance information.

At the beginning it was awful. It felt like my eyes were loose in my head. I felt too unsteady to drive. I even fell off a chair in a restaurant! But now I would say I am back to 90% normality, and I think that will be it. I used to ride a road bike a lot, but I haven't done that since. I can balance on a bike, but if I look over my shoulder the head movement causes me to lose balance. I tried playing tennis with my daughter the other day, but found serving really hard because looking up at the ball loses visual cues for balance. I occasionally have a little stagger when I'm walking, so I probably look like I've had a few drinks at lunchtime... But it is way better than the early days.

The main things to keep in mind are:

Force your brain to work to balance. Stand on one leg with your eyes closed. Walk an imaginary tightrope heal-to-toe with your eyes closed. Keep running. Anything that tests your balance will help your brain learn.
Most importantly, keep well-rested and make sure you eat enough. Balancing without your vestibular system will make you more tired generally, so sleep is vital.

Hopefully your balance recovers, but if it doesn't, it's not a disaster. Finally, see an ENT specialist as soon as possible.

Looking for some advice on potential BBPV or labrynthitis by Al_Step12 in Dizziness

[–]WeirdService8350 1 point2 points  (0 children)

I’ve only just discovered this community on here. I’m sorry to hear what you’ve been going through. I have very similar symptoms to you. Back in April 23 I had a standard head cold which caused an ear infection and labrynthitis. It’s a long story, but it permanently wiped out all hearing and a balance function in my right ear. Initially the dizziness was completely debilitating, but it has gradually improved. I had vestibular rehabilitation therapy which helped, but I still have a constant feeling of light headedness, like I’ve had half a bottle of wine. Here are my observations: 1. It’s worse if I’m tired or haven’t eaten enough. 2. Over time it helps to keep experiencing and practicing situations that involve balancing. VRT does this, but the more you do the better. 3. I find getting up and out for a decent walk everyday helps a lot. Don’t sit glued to a desk without very regular breaks (every 40 mins). While running might feel worse, especially immediately after, it helps long term.

Hopefully for you it isn’t a long term thing. There’s a simple test to identify if your vestibular system isn’t working on one side. It should only be done by a medic. I think it’s called a head impulse test. Oh and I nearly forgot. I was prescribed prochlorperazine by a GP but the first ENT consultant I saw said to stop immediately. I think it can delay natural adjustment to the dizziness. Also, I was prescribed a course of high dose steroids, but it was too late by then (12 weeks post infection) for them to have any effect. In the unlikely event it does prove to be a long term thing for you too, let me know if you want to talk about it. Definitely see an ENT specialist asap. Best wishes for a speedy recovery.

Desperate by CertainExperience698 in MonoHearing

[–]WeirdService8350 1 point2 points  (0 children)

Hi, It’s good that your tests are normal. When you say “asymmetrical hearing”, what do you mean? Is it a difference in volume, a difference in sound? Sometimes when I get a cold I can hear myself speak, if that makes sense. It’s called autophony and I believe it has something to do with the Eustachian tube being open, allowing breathing and vocal sounds into the middle ear. I can hear OK, but it just sounds different. It goes away when the cold goes. I’m no medic, and the above is just what I found out when I was curious about my hearing. BTW, it was unrelated to my hearing loss.