I’m interested to see other people’s experiences with SSD/monohearing and how it’s affected them throughout their lives.

My daughter was born a few weeks back and it’s caused me to have some reflection on my own childhood.

I’ve been deaf in my right ear since I was 5 following a cholesteatoma. I had an operation at the time but continued to have discharge throughout primary school until I was about 11 and stopped until I was 16 when the growth returned and the discharge started again. Operated at 17 to remove the cholesteatoma again and 3 more ops to try and improve hearing, all failed.

I’m now 32, no discharge since the last op, but still deaf in my right ear. The ear has a consistent ache to it and is slightly misshapen.

I was always a shy kid growing up, but have become a lot more outgoing as an adult and managed to have quite a successful career and a beautiful young family!

I struggled making friends as a kid, I’m unsure how much of my deafness was the cause of that. Whether it impacted my confidence or if the other kids looked at me as the weird kid with yellow stuff coming out his ear every few hours. Either way, it would have had some impact.

Being deaf in one ear has always been on my mind. From small things like missing parts of songs because my headphones don’t accommodate for one sided hearing only, to positioning myself in meetings so I can easily hear the room without a full head tilt. Not being able to hear a thing my mates are saying in the pub and now sleeping through my baby’s crying overnight (a blessing until I get an elbow in the side from my wife!).

Professionally, most people do not know I’m deaf, I don’t tend to share it until it’s necessary. And I do not like being labelled and treated differently as a result (I can tell a difference once they know).

I don’t use a hearing aid, the standard ones don’t do it for me. There was some talk of getting an osia fitted, but that seems to have gone quiet (waiting for specialist through the nhs).

I haven’t ever really put this one paper, so it’s been interesting reflecting on how ssd has impacted me growing up. I’d like to think it hasn’t had much of an impact, but I know it has.

Aren't I a dumbass? It never really occurred to me before and I've always been of the belief that being half deaf has never really affected me all that much but in reality it really has.

I find loud environments like clubs and pubs with loud music quite disorientating and I tend to detach myself from people and go stand in a corner or something. I'm not introverted or anything but I just find some environments hard to function in.

I know it's probably not a mind blowing revelation to people that are not idiots like me...better late than never I guess

I am getting the Osia 2 bone conduction implant. The surgery is coming up in just over a week, and then there will be about a 6-week physical healing period before I can get fitted and adjusted for the device. After that, I will go back into the audiologist for a calibration and delivery of the sound processor. I am curious about how the whole thing is going to go, but the following are areas where SSD feels like it has affected me most deeply:

Hyper vigilance around physical positioning in all social situations

Studying visual field constantly for body language, expression, lip reading

Constant baseline of anxiety / hyper vigilance about sifting through bad audio information (white noise)

Significant deficits in spatial awareness, sense of direction, orientation that feel, in some way, linked to auditory cortex

Delayed auditory processing speed

The brain is so fascinating, and I am sure it has “re-purposed” that whole section of the auditory cortex that is not getting any information from my deaf ear. But these 5 areas above are the ones that I’m most immediately aware of, and that I will be following most closely through the process.

Of course, I am keeping my expectations cautious. I am told that recovery from the surgery can be pretty rugged, and I expect to have some cognitive fatigue after getting the device for the first time. But I am generally trying to approach the whole experience with infinite curiosity and cautious optimism. What kinds of neuroplasticity is my 47-year old brain capable of demonstrating??

Today I had an audiology test for the first time in a couple of months and my affected ear (right) hears the same as my non affected ear.

For context, I did 1 round of oral prednisone, recovered some hearing, did 2 steroid injections, recovered even more, hearing dropped again, did another injection, and have been stable for the last 3 months. Had a follow up today which was the first normal hearing test in this whole process.

I feel so thankful to have gained my hearing back and wanted to add another positive data point for anyone searching for success stories, which was what I spent hours looking for when it first happened. Praying that it stays and this is all behind me, but ya never know!

Hi everyone. I am deaf in my right ear due to a cholesteatoma that I had as a kid. I have been deaf in that ear ever since. My parents refused to get me a hearing aid because they were terrible people and claimed I didn't deserve one.

Anyway, I finally am at a spot in my life where I can get one. I went to the doctor today and I am getting the Resound Enzo IA hearing aid. I am obviously so excited but also a little nervous because I genuinely do not know what I have been missing. I have been deaf in that ear since before I can even remember so I don't remember a life before when I could hear.

For those of you who have a hearing aid for one ear, what has been your experience in getting a hearing aid? Did it help completely? Was it like entering into a new reality? Or was it overall underwhelming? What are some things to expect?

hi! i am having my left inner ear removed. has anyone ever applied for a hearing dog with ssd? if so, what organization did you go through and what was your experience?

I went 100% deaf in one ear 5 weeks ago. Had all kinds of tests (MRI, CT, lumbar puncture, blood), but all came back normal. Started oral steroids within 24 hours. Took them for 10 days, then tapered off. My first audiogram showed 100% deafness. After 4 weeks I had my second audiogram and it showed a tiny bit of improvement, although the Ent doubts if it is true hearing or feeling or even hearing by the unaffected ear. All I can describe it as, is robotic unintelligible "sound", but I only pick it up when the volume on headphones is turned up to the max. Ent decided to try ITSI. He was honest about the changes of it doing anything, but I am willing to try everything.

Had my first intratympanic injection yesterday and want to share my experience for those who haven't had one yet. It went ok.

First my eardrum was numbed by an injection. Just a little prick and the numbing started almost straight after. Had to wait for about half a minute and then the steroids were injected in. After that I had to stay still (no speaking and swallowing) for about half an hour. This part I found a bit unpleasant because of the enormous amount of saliva I started to produce. Of course not being allowed to swallow the saliva I used up endless amounts of tissues. I felt a burning sensation in my ear, but it was doable. Every now and then I felt my ear plopping.

After about 40 minutes in total the procedure was done. After getting up my ear lost a bit of fluid and a tiny bit of blood, but that soon stopped. I did not drive home myself. It felt a bit like an ear infection for about 1.5 hour and after that I felt fine.

I write this the next day and I am fine now.

Hopefully this post will be helpful to others.

Hi everyone! I’ve had single-sided deafness (SSD) for about seven years, and my right ear is the one I hear with. I still haven’t found a pair of headphones that I’m completely happy with.

My last pair was a set of Sony WH-CH520s, modified to output both audio channels in mono through the right side, but they’ve recently broken.

I know about Yuni and 2E1 headphones, but since I live in Italy, I’d prefer something available in Italy or elsewhere in the EU to avoid expensive international shipping and import fees.

My budget is around €100. Given my situation, what would you recommend?

Thanks in advance!

Hi everyone, title pretty much covers it - I know this isn’t just for VS-havers, but after his surgery, he will very likely be completely deaf in his right side and will need cros hearing aids. If anyone in here has had the surgery, what was recovery like? What helped you heal better; or feel better? I’m talking all the details - down to maybe if crunchy food made you feel dizzy. I want to give him the best care I can and I’m freakin out 😅🩷

I do know he needs a button down shirt after surgery but that’s about it. Eye cover for the car ride home? Hat for some pressure? Let me know!!!

Hi all. I’m curious if folks experience overall fatigue from being on the phone or in loud spaces… Basically anything that really puts the working ear under a lot of stress.

Howdy, I'm wondering if anyone knows of a hearing aid resource they could share. I'm looking to invest in one for my right side hearing but can't find a comprehensive comparison that talks about the different kinds of HA, the various features and what they're good for or why you might want to consider them, the different styles/how they fit in the ear etc. etc.

I've come across tons of HA info websites that might go into detail about one type or brand of HA or have a few features mentioned but doesn't explain why someone would want them.

Thanks for any direction you can offer!

Cheers

Had an event that caused ssnhl, and started prednisone 60mg taper on day five of the sshl. Today was day 2 for the steroids.

I'm worried. Had tinnitus for 20 yrs. It sux in the deafness of the sshl the tinnitus rings thru loud

Had a CT scan audiogram & tympanogram wait now until the report is ready.

What foods to stay away from?

Love to hear advice from others, the prednisone is causing creepy feelings.

TYIA.

I have a yeti mic but I can't seem to get the noise cancelling apps to work well with it. It's an old mic too. I've been trying to find something that can either rest on my ear or near my mouth. I have extremely sensitive ears and constantly getting bad ear pain from headsets. Right ear doesn't has like 15% hearing left I also like to use desktop stereo because I can still hear both left and right with my left ear with some sound deviation. I looked online a lot but didn't see anything that really jumped out at me so I figured I'd ask you guys.

Hi All - I am in my second SSHL episode. My first happened in February 2025 and I recovered in six weeks after being treated with prednisone and injections.

This current episode started in April 2026. I did a course of prednisone and injections as soon as it happened and had some eventual improvement. I then took a nose dive six weeks later and after following my doc’s “wait and see” advice for two weeks, did another three injections. I suspect that this was actually another distinct SSHL event and we missed a vital treatment window.

I have had dramatic fluctuations throughout these three months. My last two audiology tests over the last two weeks showed moderate to severe loss in the low frequencies, the worst loss I have ever had. I seem to have stayed there with terrible fullness and tinnitus that fluctuates a little but never goes away. Most of the time it is very bad to the point where I have a hard time sleeping.

I’m on a daily diuretic, limiting sodium, hydrating and trying to get enough sleep etc. My doctor suspects cochlear hydrops but hasn’t formally given that diagnosis. I’ve had vertigo here and there but not for a while now.

Has anyone else in a similar situation recovered their hearing? It just seems like a really long time to fluctuate. I can’t imagine living like this for the long term. It’s so hard and I feel depressed a lot of the time. The doctors I’ve seen (neurotologists in a leading ENT program) have basically given up on me.

Hi! I'm 16 and have SSNHL in my right ear. I've got my diagnosis two years ago. I've lived most of my childhood without anyone knowing i'm HoH. When i first mentioned to my parents that i can't hear properly all of a sudden, they dismissed me, saying that my yearly pediatric checkups were fine and that i SEEM to hear normally, so i just kind of, as a dumb kid, went with it and pretended nothing is happening.

Just 2 years ago i started bringing this up, because i realised this is indeed not at all normal and since i wasn't a little kid my parents thought that maybe i wasn't kidding.

Turns out that i have moderate-severe hearing loss, so now i wear a hearing aid, but to be honest it really doesn't help much, if i had to guess, it only ups my hearing by less than 10% and only makes noises louder, not understandable.

What i have also noticed is that if i don't focus on my right ear i don't hear anything except tinnitus, like at all. Someone would have to scream right next to my ear for me to hear something, but my test results say i hear better than that???

I think this was caused by me loosing my hearing at such a young age, and without any compensation for it, i just stopped using it completely, which leaves me even worse off.

Sucks.

I would love to know people’s experiences of parenting as a single sided deaf parent - I lost my hearing suddenly in my right ear when my second child was 9 weeks old. Other than the mental health aspects I have adjusted to life somewhat well. I didn’t go down the path of cochlear implant and have decided along with my ENT and audiologist that it wasn’t the best choice for me, I know it does suit a lot of people. I’m contemplating another baby - those of you that are single sided deaf, have you had families and children and how many children did you have? What is life like and what are your challenges? One of my main worries is not being able to hear my kids in the night as teenagers. I sleep with the baby monitor currently and so far have had no issues hearing my kids in the night (it must be mother’s instinct!) Would love to know how life has looked for you as a single sided deaf person, how you’ve managed over the years and how many children you had

June 30th around 8:30pm I had just gotten off work and was doing my normal household chores, thinking it was a normal night. I bent down to look at something under the chicken coop and suddenly was hit by tinnitus and loss of hearing. I figured I’ll go to sleep, and in the morning it’ll be fine - maybe a migraine, I get those… it wasn’t. I never got hearing back.

I called and got super lucky getting into ENT the next morning, within 14 hours. They diagnosed it as SSHL of unknown cause (I hadn’t been sick in a few months) and prescribed 60mg prednisone for 8 days, tapering off to 40 and 20 for another 6. It didn’t help much. I started injections the next week and am on my second one but it hasn’t helped much either but I do believe there’s been some improvement. I get one more on Monday.

My test with audiology came back and they’re recommending a hearing aid. I never would’ve guessed insurance doesn’t cover hearing aids.

Is there any recommendations anyone can give me on what to try next? I know there are a lot of similar stories out there! Did any one else have similar test results and get more hearing back later?

Here's a little story that will be familiar to many of you.

I had SSHNL 1/11/26. Starting about 2 and a half days ago, I had some vertigo. At night, when I put my head in 2 oclock position, I would get BAD vertigo. This is the same symptom I had with the loss of hearing in my right ear. Panic ensued.

I was able to get into my ENT today and they did a test to confirm that my hearing in my R ear has declined a bit more, but left is holding steady. I do not appear to be having another bout of SSHNL in my "good" ear as I feared.

But the anxiety last night was tremendous. I'm so tired from lack of sleep and stress.

Now I feel better after getting some objective data from the ENT. Always get objective data from your ENT when possible.

My SSNHL loss event was Feb, 2025. I initially lost everything, but did gain some back... but its mostly distorted. SO! Cochlear implant surgery is next Friday.... honestly, I'm posting this here because i'm SO NERVOUS and also cautiously hopeful/optimistic!!

That's it! That's the post! 😄

I have had single-sided deafness my whole life. It is complete, meaning there is no chance of improving things with hearing aids, cochlear implants, or any other technology going into that side. The only possible treatment has been to try to “move” the sound over to my good ear. Up until not long ago, that was something that could be done through a “relay” device where you wear two hearing aids and the one on the bad side relays the information over to your good side. Then, they realized that your skull is designed to conduct sound. (This is a pretty amazing feature of your skull.) From this came the first “bone-anchored” devices, which were literally titanium screws that were screwed into your cranium, sticking out through your skin. A receiver was mounted on the screw, and the sound travelled through the receiver, into the screw, into your skull, and was then carried over to your good ear. At age 47, with three young sons, I was finally desperate enough to try this. But when I met with the audiology team a few months ago, they told me that there had been another advance in the technology. Now, rather than drilling a screw into your cranium, they could slip a transducer right under your skin. This would sit against your skull and pass sounds along by vibration. Attached to the transducer, by magnet through your skin, would be a sound processor. And this system, they said, would provide 360 degree hearing to the single-sided deaf.

So, I’m going to try it. I go in to get the transducer implanted on July 31st. It takes about 6 weeks to heal and settle, and then I will go back to get the sound processor calibrated and delivered. It feels like such a wild thing to do that I would like to occasionally post about it here and share my experiences with anyone who is interested. Not only do I expect to go through some really major learning curves, with all the attendant anxiety and fatigue that might come with it, but I also am very interested in how this new capacity to hear on all sides will affect my overall cognition, if at all. After 25+ years working in special education teaching, policymaking, and leadership, I am also eager to document this next phase of my personal disability journey. Follow along for occasional, likely irregular notes during the lead up and aftermath of this procedure.

Matt

https://substack.com/@mattholloway1/note/c-294044274?r=7a8c4&utm_medium=ios&utm_source=notes-share-action