@Street Novelist, a small feasibility study on cochlear Implant patients is scheduled to start this year. It will be carried out with 3-6 participants.Any idea when the clinical trials are starting?
So, basically a study just to make sure it's safe? Will they even be conducting hearing tests afterward?@Street Novelist, a small feasibility study on cochlear Implant patients is scheduled to start this year. It will be carried out with 3-6 participants.
@Street Novelist, a lot of research and time has gone into this. I was part of the focus group back in the summer of 2023. Please take a moment to read through the thread.So, basically a study just to make sure it's safe? Will they even be conducting hearing tests afterward?
A new media piece on Rinri Therapeutics:
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A Landmark Year Ahead for Rinri and the Hunt for a Cure - HEARING LOSS JOURNAL
Inside the Cochlea (Courtesy C. G.www.hearinglossjournal.com
So, all of the participants have hearing loss severe enough that they will be receiving cochlear implants regardless."Rinri will recruit 20 patients from across the UK. 10 of them, aged 60-74, will have age-related hearing loss (Presbycusis), and the other 10, aged 18 to 74, will have Auditory Neuropathy Spectrum Disorder (ANSD), a disorder where hair cells are functioning but their signals don't reach the brain. All of them will receive cochlear implants along with Rincell-1."
I just hope we get some evidence that a solution is on the way.A new media piece on Rinri Therapeutics:
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A Landmark Year Ahead for Rinri and the Hunt for a Cure - HEARING LOSS JOURNAL
Inside the Cochlea (Courtesy C. G.www.hearinglossjournal.com
I'm not sure how, but the cochlear implant can objectively detect changes in hearing health. They have actually adjusted the trial design slightly. In 2023, the plan was to have a small cohort of 3 to 6 patients.went back and re-read page 1 of this thread, and it states that the researchers will measure hearing differences by asking patients to record data using their implants.
Because they already blur the process and any results with something that significantly affects the ear, it reminds me of how Frequency Therapeutics relied on a largely subjective test to measure outcomes, which ultimately proved useless. This seems like a similar situation.@DimLeb, why do you think that?
@DimLeb, there are several reasons for using these patients in the trial:Because they already blur the process and any results with something that significantly affects the ear, it reminds me of how Frequency Therapeutics relied on a largely subjective test to measure outcomes, which ultimately proved useless. This seems like a similar situation.
@LovableGamer, about 25% of patients have hearing loss primarily caused by the degradation of auditory nerve fibers. As I understand it, this is mainly age-related.Would this help someone like me with sensorineural hearing loss? I have Turner syndrome, which causes a gradual decline in hearing. Even if I could regain even mild hearing, that would be amazing.
Another thing I wonder about is how this would affect the brain. Would it adjust to hearing sounds again? If I could hear without hearing aids, that would be incredible.
Yeah, I really hope we don't have to wait that long either. I recently had an ear infection, which wasn't good for my mental health. It also made me worry that I had lost more of my hearing, which really scared me. So, I made an appointment with an audiologist.I have a lot of faith that this technology will be successful, even if it doesn't become the future gold standard for inner ear repair. But I also have this horrible feeling that progress through trials will be painfully slow, and it will take forever to reach the market.
I really hope I don't have to wait until 2040 to stop worrying about my ears every day.
By that point, we'll probably have bigger problems—like contending with giant irradiated ants.
I'm in the same boat. I actually have a counseling appointment tomorrow and a group session at another time.I really hope this is successful. The hearing loss is starting to stress me out even more than my tinnitus.
I know we can only speculate, perhaps even they aren't entirely sure of the outcomes until the results are seen, but I'm still unsure about exactly what this is supposed to repair.I'm not sure how, but the cochlear implant can objectively detect changes in hearing health. They have actually adjusted the trial design slightly. In 2023, the plan was to have a small cohort of 3 to 6 patients.
This treatment is aimed at repopulating auditory nerve cells, not synapses. There is sometimes confusion between the two. The auditory nerve carries the signal to the brainstem, while synapses are the connections between hair cells and auditory nerve cells.
Some information is here.
Nail on the head, @Scruffiey!I know we can only speculate, perhaps even they aren't entirely sure of the outcomes until the results are seen, but I'm still unsure about exactly what this is supposed to repair.
So it's being injected into the auditory nerve, which I assume should remyelinate it to improve transmission. Is the hope that it will repair the entire olivocochlear efferent system, meaning it could potentially help with issues like hyperacusis as well? Or is it just expected to enhance hearing level and clarity by reattaching nerves to synapses and hair cells while possibly making certain issues like hyperacusis worse?
Also, I'm not expecting to get my tinnitus cured and then run to the front of a concert (the thought honestly makes me feel ill), but I'm curious about how sturdy these repairs might be. Will we still have fragile hearing after treatment but just hear better, possibly without tinnitus? Or is there hope that it will restore some resilience so we wouldn't need earplugs in a restaurant and wouldn't have to worry about needing another treatment 10 years down the line?
My hearing was as tough as nails—until it wasn't. I just had my audiogram today, and my left ear is nearly 0 dB across the board, which frankly defies logic. Meanwhile, my dodgy right ear has a 30 dB dip at 6 kHz, which isn't even where my tinnitus frequency sits.Nail on the head, @Scruffiey!
Even before my first tinnitus onset, I had to live with very sensitive hearing. After I developed tinnitus, my hearing sensitivity worsened—hyperacusis or reactive tinnitus, I think it's called.
So, I did my best to live a sheltered life over the years.
Recently, I was exposed to a smoke alarm and a fire alarm (unfortunate, but that's life), and a day or two later, I experienced a tinnitus spike like nothing before. My biggest fear is that this will become my new baseline level.
Sad story and all that, but in a conversation with my social worker a month or two ago, he mentioned that he had tinnitus—but no hyperacusis. Compare that to many on this forum, where there are plenty of posters dealing with hyperacusis.
If a breakthrough treatment comes, chances are it will be quite different for those with hyperacusis compared to those with tinnitus alone. Will the former have to visit the ENT every six months to get their synapses, stereocilia, or hearing nerve "fixed" again?
A recent poster here was wondering if constantly wearing earplugs and earmuffs was causing his brain to increase his tinnitus level.
As for me, after my recent loud noise exposure from the smoke and fire alarms, I'm thinking I've been doing the right thing all these years—ducking down and living a sheltered life away from loud noise.
'Nuff said. I just hope the researchers hurry up.
From what I gathered from this podcast episode, their Rincell-1 treatment is supposed to replace broken cells, and later, with Rincell-3, regenerate hair cells. So maybe it will help with hyperacusis.Even before my first tinnitus onset, I had to live with very sensitive hearing. After I developed tinnitus, my hearing sensitivity worsened—hyperacusis or reactive tinnitus, I think it's called.
So, I did my best to live a sheltered life over the years.
Recently, I was exposed to a smoke alarm and a fire alarm (unfortunate, but that's life), and a day or two later, I experienced a tinnitus spike like nothing before. My biggest fear is that this will become my new baseline level.
Sad story and all that, but in a conversation with my social worker a month or two ago, he mentioned that he had tinnitus—but no hyperacusis. Compare that to many on this forum, where there are plenty of posters dealing with hyperacusis.
If a breakthrough treatment comes, chances are it will be quite different for those with hyperacusis compared to those with tinnitus alone. Will the former have to visit the ENT every six months to get their synapses, stereocilia, or hearing nerve "fixed" again?
A recent poster here was wondering if constantly wearing earplugs and earmuffs was causing his brain to increase his tinnitus level.
As for me, after my recent loud noise exposure from the smoke and fire alarms, I'm thinking I've been doing the right thing all these years—ducking down and living a sheltered life away from loud noise.
'Nuff said. I just hope the researchers hurry up.
All we can do is speculate! I'm sure even they won't have all the answers until data comes back from the trials. But I'm with you on the optimism, otherwise I would not be willing to subject myself to experimental surgery if I have the chance to participate.From what I gathered from this podcast episode, their Rincell-1 treatment is supposed to replace broken cells, and later, with Rincell-3, regenerate hair cells. So maybe it will help with hyperacusis.
Maybe hyperacusis is just overactive outer hair cells, and this treatment could fix that as well. I really do not know, but I hope for the best. I have developed very mild hyperacusis, and even that is annoying. I cannot even imagine how terrible it must be to live with full-blown hyperacusis.
They hope the treatment will be a one-time procedure, but if you damage your hearing again, it may be possible to repeat it since it is a minimally invasive surgery.
In the distant future, they hope to develop a universal cure for all types of hearing loss. I know it sounds like a fairytale, but with the AI boom in biotech, maybe we will hear perfectly at least by the time we retire.
I know my post contains a lot of hope and maybe even some wild speculation, but please do not blame me for being optimistic that we will one day get rid of tinnitus, hearing loss, and hyperacusis one by one.
I took a glance at your introductory post, which says the onset was last summer. Most people seem to improve somewhat after the first few months. Back when I was learning the ropes, they used to say that if you still had it after two years, then it was considered chronic. So there is still hope that you might pull through, not unscathed, but with the tinnitus quiet enough that you can get on with the main event.My hearing was as tough as nails—until it wasn't. I just had my audiogram today, and my left ear is nearly 0 dB across the board, which frankly defies logic. Meanwhile, my dodgy right ear has a 30 dB dip at 6 kHz, which isn't even where my tinnitus frequency sits.
Despite that, I still ended up with hyperacusis in both ears once the tinnitus took hold. Thankfully, that aspect has mostly faded after five months.
However, I am not sure if these treatments will work like a factory reset, similar to the gene editing approach proposed by Dr. Zheng Yi Chen. I wonder if I will lose the sturdy protective mechanism I once had. Not that I would put it to the test, but I don't want something as simple as a dropped plate landing me back with tinnitus. I also worry that any miswiring in other areas of my hearing system could end up being amplified.
Now that we know efferent fibers tell the cochlea to turn up the gain in response to hearing loss, I wonder—if that system has been damaged, do we think it gets repaired at the same time? Or are we relying on the brain to figure it out?
Obviously, in a preexisting case like yours, you might need some kind of protective or efferent-calming treatment once the tinnitus is resolved.
It is life, but it is pretty cruel that a normal part of modern existence, combined with a faulty basic sense, can cause so much suffering. Hopefully, your current spike is just that.
I am happy to live a quiet life even after a fix, but it would be nice to know if I could go on holiday somewhere peaceful or even pop into the shops without worrying about leaving the earplugs at home.
I am hoping to jump on any future clinical trials if they will have me once the cochlear implant cohort is done!
Not even last summer, it was late October, and my whole progression has been so bizarre, filled with nearly every symptom in the book, that I can't tell heads from tails.I took a glance at your introductory post, which says the onset was last summer. Most people seem to improve somewhat after the first few months. Back when I was learning the ropes, they used to say that if you still had it after two years, then it was considered chronic. So there is still hope that you might pull through, not unscathed, but with the tinnitus quiet enough that you can get on with the main event.
I remember a medic in the US once talking about back pain. He said the jury was still out on whether it was caused by a single event where you strain your back or the cumulative effect of all the strain your back has been under over the course of a working life.
I wonder if the same could be said of tinnitus. If someone works in a band, has a loud full time job, and listens to music at full volume with headphones, does it all add up over time?
One thing is for sure. A loud acoustic event, an explosion or a firecracker up close, can lead to hearing damage and tinnitus.
Hang in there, bro. I hope work improves, and I'm praying for a cure or at least something that helps alleviate it.Not even last summer, it was late October, and my whole progression has been so bizarre, filled with nearly every symptom in the book, that I can't tell heads from tails.
It started as a normal "eee" but went absolutely catastrophic a couple of weeks in. Was this extreme anxiety from the nasal steroids, combined with them giving me patulous Eustachian tubes? Or was it just the natural course of my tinnitus? I'll never know. Five months later, it has now settled into an old-fashioned phone dial tone droning next to my ear, with some background power pylon electrical buzzing.
I find that hyperacusis is probably the worst part. If my ears felt settled again and were not worsened by something as simple as a taxi ride to the audiology department in earplugs or an accidentally clinked mug, I think I could begin to ignore the tinnitus and live a fairly normal life.
Yeah, I think my luck just ran out. I hit the straw that broke the camel's back, even though it wasn't an extremely loud event. I even survived a close proximity explosion 13 years prior with just a little high-end loss. Wish I had known back then that this stuff was cumulative! Maybe it was the combination of factors: the infection that had been blocking up my Eustachian tube beforehand, the aggressive pub band that gave me a brief ring after waiting at the bar two months earlier, winter allergy inflammation, or years of extreme stress leading up to it. Without all that, maybe I would have just ended up with regular old hearing loss.
As you said, I might still recover in time. It has generally moved in a positive direction, though it will not change much beyond my daily comfort. Maybe I can carefully reintroduce some small quiet pleasures, knowing that worse may be lying in wait and might one day deny me even the small comforts I still take for granted.
Yeah, me too. I honestly can't believe we're still stuck in the "think it better!" stage of medicine when it comes to this. I guess 30 years ago it just wasn't as urgent; the world wasn't quite as noisy. Still, for someone with a fairly broad knowledge base, I can't believe I'd never even heard of the condition! I would've been a lot more careful.Hang in there, bro. I hope work improves, and I'm praying for a cure or at least something that helps alleviate it.
Right now, I always carry a pair of 3M Peltor hearing protection with me. If I see something loud coming, I put them on. I'm not sure if that's the right thing to do, though.