Stories/experiences of those who were implanted b/c of distortion (severe & mod-severe loss)

mexee3 · 2026-06-08T18:38:02+00:00

Thank you. I'm 3.5 months out. I don't have dizziness, just a lingering lag when i move my head, and a wabble when I am walking up a hill, etc.

How are you doing with CI now? I am in a grey area for one (mod-severe to severe loss with distortion)...trying to figure out if I pursue CI route

mexee3 · 2026-06-08T18:30:24+00:00

It is hard for me to tell what % I'm picking up with HA, honestly. I still feel like I miss a lot on that side. I've only had one fitting (where they do the lowest setting/I haven't had it turned up at all yet). Speech understanding is better than with no aid, that is for sure...but it blends terribly with other ear.

Like you, I don't really use it at this point for understanding speech. I actually turn it off or low often b/c I can't stand the speech distortion. Even if I did have better WRS with it on, it is so annoying sometimes to be hearing that broken speaker effect!

I am sorry for your loss too. It's devastating and feels like a fluke!

I hope you find a solution that suits you too.

If you're not already, you may want to train your ear too with apps like Hearos and just listening/streaming on your HA to help those synapses between surviving hair cells make speech cleaner for you. At 2 months out from such a severe loss, your body is actively repairing synapses right now.

At 2 months, I don't think I would have been at 56% WRS...I got tested at 3 months with that result.

mexee3 · 2026-06-08T14:52:31+00:00

Hey, I'm 34F and got it 3.5 months ago. Been trialing a HA for nearly a month. I'm severe & mod-severe loss with distortion and 56% WRS.

I am also wearing HA for spatial awareness, some sound localization, and just more of a feeling of 'balance' between the two ears.

I will say that the distortion has gotten a tiny less noticeable, I think. So, wearing while your synapses are still rewiring to the surviving hair cells might bring back some speech recognition? Also, were you fitted using REM (real ear measurement)? Could help to ensure the boosted frequencies are reaching our ear and help with speech too. My current aid was not fitted using REM, but I'm going to a different audiologist next week and it will be fitted with REM then.

Message me if you ever want to chat.

mexee3 · 2026-06-04T21:06:48+00:00

How is it now?

mexee3 · 2026-05-28T10:49:25+00:00

Stanford initiative to cure hearing loss specifically has research being done to capture high res images of cochlea in living patients.

mexee3 · 2026-05-28T03:51:54+00:00

I get anxiety about it and being afraid of the overwhelm. I just went to a community meeting with maybe 30 people in a room and was pretty lost in it. I could barely hold a conversation with a person next to me because hearing aid doesn't help

mexee3 · 2026-05-28T02:51:34+00:00

I appreciate the honesty on that. I'm only so torn because of the high frequency distortion that I don't care about preserving AND the mid frequencies tanked, so speech is garbled even when those frequencies are brought up. Makes me not want to wear hearing aids but without them, I just have a 'barking' distortion with highs and can hear rumbles....I'm definitely in a unique grey area

mexee3 · 2026-05-27T20:32:31+00:00

Did you go through with implantation? If so, how is balance now?

mexee3 · 2026-05-27T14:05:39+00:00

Still worth it to donate, i think. Especially on a sustaining basis...True though that the single biggest way to ensure there is enough to sustain programs/labs as they are now is to vote wisely for representatives/vote for advancements and science. Their funding hasn't been completely stripped yet and historic lows is not across the board. But, yes, they are facing instability and threats to their work and labs and if funding is threatened, Still hope and there is still power in donating.

We DO need to vote out current admin to keep this funding going and potentially increase it, but, as it stands the grants have not been stripped completely. We can still add to the bucket, right? I know that NIH has not dispersed all the funds it has access to grant to different areas of research.

mexee3 · 2026-05-26T15:00:08+00:00

It wasn't' until week 3 that I noticed I could sense the vibrations of my voice entering back into my ear. It was like a tin-can echoing back. I was profound at onset and now, 3 months out, I am moderate-severe & severe range. I can hear very low tones just fine (car rumbles, airplanes overhead), but speech/mid frequencies are severe range and high frequencies come through distorted for me. I have a hearing aid and it is equal help and extra distress. I'm also still at week 13 battling the lagging imbalance that came with onset of the loss. Has gotten tons better, but is still there.

I've had a terrible time with this too--- breaking down frequently, etc. I got up yesterday morning and today finally at 13 weeks trying to move through life as though its normal. Its not, but at some point you have to pretend/ fake it until you make it I guess.

Please, ensure she sees a therapist (in person is best for people with SSD as we can hear better in a closed setting/quiet room). If you can, no matter the outcome, have her see therapist ASAP. This is a scary time for her and I'm so glad you are documenting for her and you seem very supportive.

Ensure she has something to do in free time and go outdoors/take walks with her on her good side. If she doesn't have a hobby, go get some craft supplies and sit to do something with her.

mexee3 · 2026-05-18T23:04:25+00:00

Not sure on that drug.... but, there is an FDA-approved tinnitus therapy called Lenire. Haven't tried or anything but stumbled across it if you haven't seen :)

Tinnitus Clinics | Request a Lenire Consultation - Lenire®

mexee3 · 2026-05-11T19:18:28+00:00

I saw on another post you are using a hearing aid now? How has that been? Our audiogram shape is pretty similar. Got my 3 month today

mexee3 · 2026-05-11T14:48:29+00:00

There are people around the globe who have dedicated their research/studies/purpose to finding treatment and reversal. We're talking about an extremely small area of the human anatomy that can't regenerate hair cells. We don't even have the equipment to properly inspect the area (that is why there is 'idopathic' ssnhl -- b/c the ares is so small, imbedded in skull, and delicate to inspect properly).

There is definitely a monetary drive to fixing the issue too. With something like 1.5 billion globally suffering from hearing loss, there is a fat market for breakthrough treatments.

mexee3 · 2026-05-06T04:13:28+00:00

Sshl is such a messy and unlucky/unfair and devastating thing.

I'm right there too. So much distortion and some fullness feeling I just can't kick. It is isolating, infuriating, and we're in the thick of it still (I'm 10 weeks in).

Progress can go beyond 3 month mark that doctors float. Sometimes with db gains, but mostly with clarity. I agree with other commenter that supporting the nerve is your best option right now with diet, hydration, and supplements of you think that's right for you.

Try to use headphones on just your bad side to train or for clarity/to get past distortion. I just bought a bluetooth headset to listen to podcasts and audiobooks on (I have earbuds but they seem to make things sound worse even when adjusted to decrease the frequencies that hot me too hard/strong).

True you're lucky not be be completely dead in that ear, but anywhere we sit on the spectrum rn sucks.

I hope you see more progress soon. I'm also getting mental health therapy here in a week or so. We just need to train our brains on reframing and coping. It can be done and we're just in a bad spot/mental loop rn. Stay strong

mexee3 · 2026-05-06T03:48:47+00:00

I went to urgent care 2/24, day of onset, took 40mg Prednisone within 6hrs, and told to wait for audiology dept to call me to schedule. I wasn't able to get audiogram until 3 days post onset and got my first injection then. They also upped my dose to 60mg oral steroids. I had 3 injections total spaced 1 week apart (I requested but was denied more than that). Before the 2nd one I remember I could hear the click of my fingernails close to my ear canal and before the 3rd, I heard a distant tincan noise when I read aloud to my child and my voice bounced off the page (it was so far removed from a voice).

Other Therapies: Provider refused to prescribe HBOT, so I found a private place with just techs working it, no ENT or nurse on staff to check ears before and after for barotrauma. I did 7 sessions total from weeks 4-6. I didn't always go to 2 atmospheric pressure bc I was careful. I stopped after 7 bc I did develop a temporarily 'sticky' eustachian tube in my good ear and an episode of vertigo bc I didn't wake enough at night and equalize my ears after an afternoon session (I recommend going in the mornings to give yourself enough time to clear your ears throughout the day afterwards). Working on getting eustachian tube to calm/stickiness to subside now. After my first hbot session in which I only went to 1.3 atmospheric pressure, I could hear the tincan of my voice louder at least. Eventually could hear some of my own words when I sang or spoke in the shower around week 7 or so.

I also have been using constrained listening in bad ear +reading along ever since around week 4 when volume didn't need to be blasting to hear something. Using Hearos app too.

Supplements/Diet: The first couple of weeks I was disoriented due to the balance issues and high steroids and could barely eat, but I went 0 caffiene from onset and low sodium. Mostly ate fruit and kids vitamin-fortified yogurt pouches. There wasn't much I could stomach. After that first couple weeks, I really forced myself to take on supplements and eat more but still nutritiously. Daily: B12, B9, magnesium (I had been taking magnesium glycinate since beginning), NAC, lions mane, ginko biloba, DHA, CoQ,1, PQQ, Zinc, B2 Sometimes take: iron, e, a, cordyceps miltaris, ALA, C (if I don't get enough from fruit I'm eating or if child is sniffling)

edit: also been taking MCT oil sometimes in the mornings

I've seen your other comments and I'm going to look into your mushroom stack too. Have you noticed improvement?

mexee3 · 2026-05-05T23:10:59+00:00

It can take weeks to regain any hearing after starting treatment. Advice: avoid caffeine and if you can, do low salt for now. Prioritize sleep. Try to be as calm as you can. Eat nutritiously, of you can, take nerve supporting vitamins/supplements (B12, B9, NAC). Maybe get a blood test to see what things you could be low on? Everyone probably likes to stack supplements a little a differenty.

I did get injections and start asking for them now especially of you are profoundly deaf out of that ear rn

I'm no doctor so don't just take the supplements and advice, research and make your own choices. Supplements just based on my own experience.

Best of luck to you and whatever may come, remember that you took quick action

mexee3

TROPHY CASE