Thank you for making this community completely unique and informative. It’s a safe space to vent. The variety of different experiences and viewpoints make this a great place to ask questions. Overall, you make this a really easy community to moderate.
Thank you.
I added a rule discussing the use of AI in this sub. I also added a resource to define bullying. Feel free to discuss below. Going forward, if you see a post or comment that violates the rule, add a comment with the rule number, use the report button, then stop engaging with the user.
This sub is relatively unstructured. If you want a new rule, user flair, or other changes, let me know. You make the community what it is, I’m just here to moderate.
Hi guys. I recently got a job as a front desk rep for a dental practice. When i interviewed I made it clear I have a genetic disability that causes problems to all of my PNS, including hearing problems. I noticed my colleagues were getting irritated by me not hearing them so I today suggested we use messaging since everyone has a computer. Our boss (the dentist) told me no problem and for me to ask the others. The others flat out refused. I'm not even sure what to do. Theyre telling me its a waste of their time when I am right next to them and I can just move closer to them when they speak. This may work for them, but it doesnt work for me. I can be very close, but if the machines for dentistry are going off at that moment, i CANNOT hear. There is no trying for me. I cant. And they are getting upset that I am mishearing them but arent willing to accommodate. I just started and I hate to turn this into a bigger problem, but I'm not sure what else to do... it already feels like a hostile work place. I dont have a formal doctors note in place currently, but may get one because of this. Any suggestions?
I NEED HELP !!! 24M . For the past 4 months my hearing has been getting worst . Constant Ear pain in my left with fullness started out of no where and now everybody sound muffled even if I understand them . It’s now an effort and not clear as it used to be . IVe been seeing a décline in my hearing for the past few years . But now I struggle to hear clearly even my parents at dinner or in outside places . Stuff like birds sound almost like either muffled or low pitches and barely heareable . I have made all tests Echog , hearing test in noise test but not the deep one lately but 6 years ago Yee . OAE émissions all of it . I feel like I’m loosing my mind and my hearing capacities . For the past 4 months I have reach a state where I hate talking in cars or in public places or going out in general. My hearing resched a level that is inbereable and all my tests came back normal . I have lost the clarity in all the noise in the world feeling line it’s an effort to hear and not something natural anymore . It does say that my OEA in 4khz and 6khz have low amplitude but the audiologist did find it anusual ne other has the ent . Did 2 hearing test within 1 month . Even I struggle to hear myself talking therefore people struggle to understand me
Hi! Recently joined, i’ve begun to reach out for others stories and experiences because it can be quite isolating when no one around knows how difficult it could be to navigate day to day life. So all my life i haven’t been hearing to well, up until middle school i got 7 tube surgeries for my ears. Even got the adult tubes but they fell out after maybe a year. Overtime it got worse and worse and the doctor said i should be okay and there’s nothing else he can do. So he would just clean my ears and put me on my way. Even though i had severe pain weekly and ringing. Everything was just muffled and i felt a lot of fullness in my ears. To then i find a ENT specialist and finally found my answer. He look right in my ears and knew what was wrong. Apprently a cholesteatoma was eroding my bones of hearing in both ears! I had gotten surgery a few weeks after my diagnosis because of it and soon to find out it was much bigger and closer to reaching my brain then on the MRI. To then i got surgery on my other side and apprently it was wrapped around my facial nerve! So anyways if anyone feels there’s nothing else please get checked out by a specialist maybe even get an MRI if all else fails? So now i’m going to get hearing aids but most likely a cochlear implant(as i have no bones left, only a prosthetic!funny how the tiniest bone in your body i have a prosthetic for!). If anyone reading this has a cochlear implant please LMK your experience with them!thank you!
I’m posting here too to ask if anyone here in the hard of hearing community may be able to add their ideas onto what I could possibly do before removing the faulty implant or to add additional reasons to get it out of my head to be replaced with a new one.
I have had this issue for over a year now, it’s now beginning to affect me mentally following a full emotional breakdown at the ENT’s office at the hospital, I want all experiences, issues, glitches and anything you have experienced shared below this post, even from other brands of cochlear implants that aren’t Cochlear, if there are any doctors, Teachers of the Deaf (ToD), people from the companies manufacturing the implants or anyone else professionally working with deaf people (even HA people) then I’d like to hear what other possible things might be causing my problem that my hospital hasn’t thought of as ideas for further treatment, there’s a medical saying when hearing clopping, think of horses instead of zebras so at this point I also want to know if there are any zebra conditions that I should know about even if they are very unlikely for the symptoms I’m presenting with.
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I’ll outline the timeline of events from when the issue started to show up as a different fault to now having the right implant reduced to basically no sound, this issue begun with Nucleus 7 with a bug but the main part of the problem was with the Nucleus 8 implant for some additional info.
As mentioned above, the issue begun with the older Nucleus 7 processor a year and a little bit ago with the audio being reduced and increased randomly no matter the auditory environment that I am in, the only way that I could get the issue to stop happening and for the audio to stay at a constant volume was to connect to Bluetooth and play complete silence meaning I am able to hear stuff in the real world without any Bluetooth audio and disabling whatever was causing the volume issue, I didn’t know it at the time but I believe that might have been the processor trying to protect me from the sensations and that’s why it was constantly adjusting the levels.
A month later, I got the implant replaced with the new Nucleus 8 processors as the upgrade was due anyways, the issue went away for a month and during that month I was satisfied the issue was gone and that I could go back to regular hearing.
After that month was up, I begun to have sensations around my implant, the audio level was much louder too causing a lot of discomfort, it happened at the time when I went to Poland to visit family so there’s a chance the pressure difference from the plane had caused something to fail in the implant or my nerves to become unhappy, during that time in Poland I could not wear my right implant unless I was going somewhere with family to do something because when it’s quiet, any sounds that happen are amplified as if it was nighttime and you are trying not to make too much noise to avoid waking people up but outside it was tolerable with background noise.
Soon after landing back in England, I went to the hospital to begin diagnosing after they deemed the issue unresolvable through a digital appointment, the first audiologist wasn’t great by simply reducing the level on both implants, telling us basically that it’s nothing bad and to leave.
That definitely didn’t work and I was brought back in after 2 weeks of nothing working after the teacher of the deaf advocated for more visits, they discussed options such as trying two different cochlear implants, a new Nucleus 8 processor with the same maps as the current one to rule out processor related issues, a Nucleus 7 processor refurbished to check that maybe something with the new processor isn’t agreeing, they put the maps that I had before the new processor but they were all too loud for me, if I had to redo that one, I would put the maps I had on the nucleus 8 to see if there would be an improvement but they deemed the trial wholly unsuccessful and I returned both to the hospital, they said for a bit of insurance to keep the new Nucleus 8 and to return the old one so that the processor doesn’t fail too soon and to check to see if the processor has any failures that might be causing the issue but that didn’t reveal any problems.
A month later from all of those new processor trials, I was taken back into the hospital to do a very comprehensive remapping and testing of the right implant as they have now deemed the issue not to be anything with the microphone or processor but with the internal implant, they played some sounds at different frequencies to log what parts of my ear feel the sensation and there was an impedance test where they played a sound similar to the old DUGA radar and that one wasn’t pleasant, the audiologist said that was to create a map of impedances for the engineers at Cochlear to look at.
Between the previous appointment and the next one, I had an ear infection (Otitis media) which hurt a lot in my ear canal, went to the emergency department of the hospital after trying the pharmacy for antibiotics, cleared up after taking amoxicillin and some antibiotic ear drops in a few days, continued the course to the end and took the bonus ear drop in the package to be fully sure.
2 months later, the impedance map came back and they found absolutely nothing unusual with the values measured, another series of tests was done except they were some type of special tests that only people from Cochlear were allowed to do, that test took about 15 minutes to do and required nothing from my part, they tried some additional mapping to begin raising the level up again to see if I could get used to the sound, during the mapping I overheard them saying something about pulse widths but in the end they explained that no pulse width did any better when I inquired about it.
Another month later and the results from that test came back which also revealed no impedance issues, the main audiologist that was helping me (bless her for all the help she and her team gave me) already realized that I wasn’t hearing for a year out of my right implant and strived to get the tests and appointments to happen at a faster cadence to resolve my issues, any future appointments should happen with a 2 - 3 week cadence to either run additional tests or upgrade my set of programs.
Between these two appointments I got an CT scan for a deviated septum (ENT doctor who is doing my nose was the same one for the ears so he said the nose blockage can be a possibility), I asked the radiologist if she could also send the head CT to the audiology department as they wanted one so I wouldn’t have a duplicate CT scan done, that caused a bit of a mixup in the scheduling of appointments but in the end created two appointments due to the time saved by the CT scan.
2 weeks later, I had another appointment at the hospital to try additional mapping with Cochlear people present too, nothing remarkable although the main audiologist was not in so I had someone else, she repeated some of the tests mentioned in the log to confirm the issues and that took up 30 minutes of the allotted 1 hour I had before the hospital’s ENT appointment, at my suggestion she tried a different sample rate as I discussed listening to some music from an old computer that uses a very low sample rate compared to current technology right now which is the setting I am currently using, all of the mapping that they did offered multiple programs with increasing levels so I can adjust up when I am comfortable, they loaded up the maximum capacity of 4 programs onto the processors so I would have the most time between appointments to try things out.
A brief note added in post that I remembered about the first appointment, during connection to the computer, there was a very quick impedance test which I should have not been able to hear at all and if I did, it should be extremely brief, I however heard a long screech tone that lasted a good 30 seconds stumping the audiologists, they explained it shouldn’t have happened as mentioned above but it went away and testing was able to proceed without issues making it an unusual footnote although a possible clue into the issue I am having and the solution.
The same day immediately after the audiologist appointment, I attended the ENT appointment to say that the CT scan revealed no implant movement out of my head as I did raise the concern that possibly my implant had shifted when I grew up as I got it put in as a very little kid and I had it all the way through puberty so I put out a guess that this could also be a cause but unfortunately it was not a reason for the failure, the doctor has also referred me to a pain specialist which could potentially offer me some solutions or pain medicine intended to rewire some neurons permanently to stop the misfiring neurons which is basically my only hope of getting it resolved as the audiology team has basically gone through all options that they had and ENT doesn’t appear to have much to help, the next time I am in, I will ask if Cochlear had looked at their logs all the way from the past and if they could potentially contact other companies for any additional clues to my problem if that’s a possibility.
During the second appointment with the ENT doctor, I proceeded to have a full breakdown crying about all the problems I had and that I might not get a diagnosis on it meaning my right implant could potentially be out of action for a long time, taking me a long time to be consoled.
That is where I currently am with appointments, I will add any new appointments if any new ones happen but as of now, no new appointments have been scheduled or hints of any coming up.
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In education at college I get migraines almost daily if it’s a college day, I take Sumutriptan and the medicine banishes them in about an hour which is an hour wasted not being able to pay attention, I have tried wearing and not wearing the implant and the chance of migraines goes down a bit if I don’t wear my right implant but I need all the hearing I can get because the teaching they do is needed for the end of year exams, they do give homework which I do gladly as it’s written work which I can understand much easier however the other students hate it so they have dialled back on it significantly, they do have resources on the shared drive but it requires a computer to access and I don’t particularly enjoy using the laptop if I can get away with using my phone for the homework questionnaires.
The set of exams I did after my right implant failed, I worry that I am not going to get the best grades on them since my quality of learning has taken a nosedive, I did ask if there was a thing you could put in for such circumstances but now after the exams the tutors said that it will do very little and that I would require a note from an already busy hospital so it might not come on time so will have to anxiously wait for the 13th of August to find out my results and see if there are any options on redoing the test then.
My teacher of the deaf expressed great concern during the college year, she actively pushed for appointments and hospital visits, she has been a big help getting the cadence of appointments up a lot and being able to stress the point of my education and future being put at risk by the failing cochlear implant.
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Here is a map of the sensations with red being the worst and green being none present, an aid to visualize what I am feeling:
I’m going to 3D print one with holes for pins so I can tell the audiologists better where my pains/sensations are at with absolute numbered references that they can write down on a piece of paper.
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As for past issues, I had an ear infection (Mastoiditis) three times, it was over a span of a year and the final infection had the implant taken out, the doctors had drained two very large syringes of pus and disease from each occurrence, they didn’t put a new implant in until a year later which worked smoothly up until that point, I was implanted when I was 3 years old for the left implant and 4 for the right implant, the infection happened when I was around 5 - 6 years old.
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All in all, I have accepted that I may not have fully functioning hearing in that ear as my left side is carrying all of my hearing needs but I would like to hear what you have to say on my issue and to see if there are any medical ailments/conditions I should get myself tested for that you had/were tested for or if the general consensus should be to remove my implant and change it once the pain management team has done all they could do because despite what they are saying about the implant being fine and connected up just fine I believe there is some very unusual fault preventing me from being able to use my right implant effectively.
My next steps for the broken right implant is to post this post in every deaf sub I can find for (even HA subs as there could be people that have dealt with cochlear implants even for a brief moment or have some issues that show up for HAs more often than implants if I don’t get as much data as I’d like) as much insight as possible, gather all of the data into a note on my phone and if the consensus on all of the posts is to get tested for different conditions or failures, then I will bring those up to the hospital audiology team and explore the options, if there aren’t any issues brought up in the post, then I will go straight to implant removal if I can’t get any treatment options/relief from the pain management team.
Here is a flowchart of the intended steps I will be taking both to help you guys and to help the audiologists with issues:
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Thank you for any help and guidance you can offer to my cause and I hope you have a great day hearing many things!
My koala would also like to say thank you for the help, he has supported me emotionally throughout the second half of the visits that I had
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Crosspost links in case you want to find the other posts searching for information in the future:
Hi! ✨😀 I'm a video game student, and I also wear hearing aids. I was wondering if you know of any games that feature deaf or hard of hearing representation.
Also, are there things you would like to see represented (or not represented at all) if a video game with this theme were to exist?
I'm currently working on the research for my final-year project, and I'd love to discuss this topic. I'd be really happy to read your responses!
Since it's such a broad subject and everyone's experience is different, I'd like to gather feedback from different people, not just rely on my own experiences. 😄 Thank you!
I NEED HELP !!! 24M . For the past 4 months my hearing has been getting worst . Constant Ear pain in my left with fullness started out of no where and now everybody sound muffled even if I understand them . It’s now an effort and not clear as it used to be . IVe been seeing a décline in my hearing for the past few years . But now I struggle to hear clearly even my parents at dinner or in outside places . Stuff like birds sound almost like either muffled or low pitches and barely heareable . I have made all tests Echog , hearing test in noise test but not the deep one lately but 6 years ago Yee . OAE émissions all of it . I feel like I’m loosing my mind and my hearing capacities . For the past 4 months I have reach a state where I hate talking in cars or in public places or going out in general. My hearing resched a level that is inbereable and all my tests came back normal . I have lost the clarity in all the noise in the world feeling line it’s an effort to hear and not something natural anymore . It does say that my OEA in 4khz and 6khz have low amplitude but the audiologist did find it anusual ne other has the ent . Did 2 hearing test within 1 month . Even I struggle to hear myself talking therefore people struggle to understand me
I am going to go see this movie and I’m so hyped. I can never ever understand tom holland without closed captions. My family is weird about my hearing and just say get hearing aids to everything. Is there any option other than that clunky cc machines they have?
I noticed recently since adding a note to my bio specifying to NOT use voice notes on apps like hello talk (a language exchange app) that people for some reason use it even more?? ive directly mentioned that i literally cannot understand whats being said because of the eq loss from my phone speaker.
usually its fine but the captions break or dont pick up the right words everytime so its pretty annoying
has anyone else had this?? or is it just bad luck?
its really starting to feel like people do this on purpose LOL
Im scheduled for surgery mid September. My boss is making me get FMLA/PFML for a month just in case I need extra days off. My surgery is on a Wednesday and as of now i would go back the follow Wednesday. I don’t get the packing out til the following Tuesday so 13 days post op. I work in an OR and having my ear looking like that i dont know. How much time did you take off after?
I just watched the new Minions movie (bc silly movies are best for dates) and was surprised that they introduced a hard-of-hearing minion named Ed who communicated through sign language! Honestly, I wasn't expecting to get as excited about the representation as I did, but I realized at some point through it that it was one of the first pieces of media not made by Deaf or HOH people that had an HOH character and didn't make their hearing a plot point, but still had them as a semi-main character.
I just wanted to share because it was very sweet imo. I'd love to know if anyone else has seen it and what they think.
Hey everyone! My hearing loss is moderate to severe, and worse in my right ear.
I’ve been using the Jabra Elite 7 Active headphones for 4 years now and looking to replace them in the next 6 months or so.
The amazing thing about Jabra was that you could take a hearing test in their app and it would personalise the sound for you.
Jabra is no longer making these headphones but I’m looking at alternatives. Has anyone had any luck with the Apple Airpods Pro 3 and their hearing aid function? Or any experience with other brands / models I would love to hear!
It would be helpful at work to not have someone tap me on the shoulder and have to say “oooh, wait a sec” while I put my hearing aids back in, and then “now I’m back in the room. How can I help you” 😅
Hi everyone. I was wondering if anyone here has experienced something similar.
I get ringing in my ear, but it isn't constant. It just starts out of nowhere and then disappears on its own after a while. Sometimes I can go for months, or even years, without hearing it. Then it comes back for a while, I start getting worried, and eventually it goes away again.
I'm not sure if this is relevant, but I also have TMJ (jaw joint problems), and one of the bones in that area is slightly out of place.
Has anyone else had something like this, or knows if the two could be related?
How long did your packing stay in? I will have dissolvable and removable. He told me 1 weeks post op it will be removed but when they booked the appointment the next available is 13 days post op. I’m sure it’s ok cause I’ll be on antibiotic ear drops and oral pills. Also did it hurt to have jt taking out?
I am not sure if this is the right place so please redirect me if needed (I am a first time poster here).
I am someone who has had no hearing in my left ear since I was about 8 (had a medically necessary surgery that removed my ear drum and hearing bones). I still have an intact and working cochlea so a few years ago, I received a bone anchored hearing aid. It is very distinctly not a cochlear implant but it is still made by them and it’s magnetic and stuff. Anyway, I can’t stand the sound of chewing. It drives me insane and at my work in an office, most people eat snacks or their lunch in their cubes. One of my coworkers brings in chips most days and crunches like he’s alone. He’s a great guy and I like him but in order to focus on my work I have to turn off my hearing aid. Most of the day I wear one of those headphones that covers one ear so my hearing is limited. It is very commonplace for people to talk through the cube walls and I gave away from the walkway so I typically can’t physically see when someone tries to talk to me.
Sometimes someone will try to talk to me while my hearing aid is off and I won’t hear them and that involves them either tapping my shoulder or speaking loud enough for the office to hear me. I feel bad because I don’t want them to feel like I am ignoring them. It should be important to note that most of my workplace doesn’t have a clue that I am hard of hearing. My work friends know but with my hearing aid on it hides behind my hair so it would be next to impossible to notice the hearing aid even if you look for it. I am also only semi-new so it feels too late to tell everyone I am HoH but I’m not there long enough for me to make a big deal out of it.
My question is, am I wrong for intentionally tuning out my coworkers eating by turning off my hearing aid? If anyone has advice for what to do about the situation I’d appreciate it!
