Inner Ear Hair Cell Regeneration — Maybe We Can Know More

[grate_biff]

Create a film about tinnitus and hearing

I agree. I have thought a lot about this myself. Problem is all my will to live and to be productive is gone. On hold, hopefully. I can´t even concentrate on a film or even the daily news anymore. Even writing this little post takes a lot out of me. Any way, I think this clip from the "Truman show" depicts in a way how life just stops when an intrusive sound enters your life (0:46). Something to build on, maybe...

 

[IvanRus]

What do you know about this study?
What kind of company is organising it?
Is it still going on?
http://www.isrctn.com/ISRCTN59733689

 

[jeff W]

What do you know about this study?
What kind of company is organising it?
Is it still going on?
http://www.isrctn.com/ISRCTN59733689

That trial drug is being tested in several locations I believe.

 

[jeff W]

Here https://cordis.europa.eu/project/rcn/193313_en.html

 

[IvanRus]

What is this research? Are they still recruiting people? What do you know about this?
http://entcolumbia.org/research/cli...-cgf166-patients-severe-profound-hearing-loss

 

[Frédéric]

NIH Grant to Fund Genetic Hearing Loss Research at University of Miami

The University of Miami Miller School of Medicine's department of otolaryngology has received a $3 million grant from the National Institutes of Health (NIH) for research on biological treatments and clinical diagnosis of hearing loss. With this new grant, Xue Zhong Liu, MD, PhD, a professor of otolaryngology, human genetics, biochemistry, and pediatrics and the vice chair and Marian & Walter Hotchkiss Chair in Otolaryngology who will spearhead the research as the principal investigator, and his team will expand their genomic and phenotypic deafness database for the clinical care of deaf individuals. They also plan to identify and characterize novel genes for hearing loss using state-of-the-art genomic tools, assess the impact of genomic testing on patients, and conduct preclinical studies of gene- and cell-based therapy approach of CRISPR/Cas9-mediated genome editing to treat hearing loss. Liu said in a press release that recent breakthroughs in genetic screening, gene or cell-based therapeutics, and gene editing for the inner ear can lead to novel therapies for multiple classes of hereditary hearing loss. "Together with our program for genetic hearing loss, these tools and strategies will create a clear path to clinical treatment and accelerate the advent of a new era of personalized medicine for hereditary hearing loss," he said.

Source: https://journals.lww.com/thehearingjournal/blog/breakingnews/pages/post.aspx?PostID=204

 

[IvanRus]

Stefan Heller, the head of one of the regeneration laboratories, is still very skeptical about the possibility of complete regeneration of hair cells.

He says that they have not understood anything yet. And, if one is to get some kind of regeneration in the coming decades, it would not be a full restoration, but a partial, so that people with severe hearing loss can use hearing aids.

Read this article - http://stanmed.stanford.edu/listening/scientists-hope-cure-hearing-loss-studying-birds.html


- "But in general, inner ear hair cell researchers are in this for the long haul."

Does his opinion run counter to the success of companies like Frequency Therapeutics. He says strange things. And this does not create optimism.

 

[jeff W]

Stefan Heller, the head of one of the regeneration laboratories, is still very skeptical about the possibility of complete regeneration of hair cells.

He says that they have not understood anything yet. And, if one is to get some kind of regeneration in the coming decades, it would not be a full restoration, but a partial, so that people with severe hearing loss can use hearing aids.

Read this article - http://stanmed.stanford.edu/listening/scientists-hope-cure-hearing-loss-studying-birds.html


- "But in general, inner ear hair cell researchers are in this for the long haul."

Does his opinion run counter to the success of companies like Frequency Therapeutics. He says strange things. And this does not create optimism.

 

[IvanRus]

https://www.cnbc.com/2017/04/18/technology-that-can-help-millions-with-hearing-loss.html

Heller expects that progress will be step-by-step.

First, diagnostics will greatly improve over the next few decades, followed by breakthroughs in hearing aids and cochlear implants, drugs and maybe gene therapy.

It's not clear which will come first, and it could take as long as 100 years, but chances are, the deaf and hard of hearing will have many more options than they do now.

 

[JohnAdams]

https://www.cnbc.com/2017/04/18/technology-that-can-help-millions-with-hearing-loss.html

Heller expects that progress will be step-by-step.

First, diagnostics will greatly improve over the next few decades, followed by breakthroughs in hearing aids and cochlear implants, drugs and maybe gene therapy.

It's not clear which will come first, and it could take as long as 100 years, but chances are, the deaf and hard of hearing will have many more options than they do now.

100 years? It wont be that long. By far.

 

[JohnAdams]

What do you know about this study?
What kind of company is organising it?
Is it still going on?
http://www.isrctn.com/ISRCTN59733689

This is the same platform as fx322. The gamma secretase inhibitor.

 

[Contrast]

100 years? It wont be that long. By far.

they completely ignored frequency therapeutics and were primarily talking about a treatment for genetic deafness.
https://www.tinnitustalk.com/posts/365108/edit
TRT/hearing aid shills

 

[bell]

https://www.cnbc.com/2017/04/18/technology-that-can-help-millions-with-hearing-loss.html

Heller expects that progress will be step-by-step.

First, diagnostics will greatly improve over the next few decades, followed by breakthroughs in hearing aids and cochlear implants, drugs and maybe gene therapy.

It's not clear which will come first, and it could take as long as 100 years, but chances are, the deaf and hard of hearing will have many more options than they do now.

Heller and Rivolta said in 2005 and following years ( it can be found in a Google search) that with their own research in 2015 there wouldn't be deaf people. I was following their research for years but nothing significant occured. Why are they saying now this?

 

[Jim51042]

Why are they saying now this?

Humans can be inconsistent and make statements that aren't grounded in scientific fact. I think they aren't paying attention with the 100 years comment.

 

[JohnAdams]

Heller and Rivolta said in 2005 and following years ( it can be found in a Google search) that with their own research in 2015 there wouldn't be deaf people. I was following their research for years but nothing significant occured. Why are they saying now this?

Dont know. They restored hearing in mice. They proved the process can occur in vitro in human cochleas, and now they are testing the process in living humans with sensorineureal hearing loss. I dont get these pessimistic forecasting statements. We will maybe know when these trials conclude, which will be in a few months.

 

[RoaringMad]

So I woke up this morning and my ever present ringing, was if possible even louder. That lead to a morning on the internet again looking for that impossible cure! I stumbled on this forum while looking up reviews on a treatment and glad I did because it reminded me that most of what is out there is a scam! I just wish the inner ear and brain were not still such a mystery. You would think that a world that can put people on the moon or satellites out light-years away from earth with the ability to transmit, and with us having the ability to receive!! WOW! And yet we still know so little about how to fix the human body when it malfunctions!!

I was scuba diving in Costa Rica, got caught in a draft and came up with a plugged left ear. Four days later it "popped" while I was performing the 20 0r 30th jaw thrust and clearing maneuver, and my left ear has been very loudly ringing ever since!! I have been told that it is not nerve related (testing), MRI doesn't show anything, the ENT told me that even if they cut the nerve (making me permanently deaf in that ear) I would most likely still hear the ringing and the Audiologist says that they don't make noise canceling devices in that range (a little over 12,000 Hz). So, I have just been "dealing" with it. However, some days when life looks and feels like H#((! , and I can't tell what has me by the tail, the NOISE and the sensitivity goes off the charts! I just want to stick my fingers in my ears and scream! (sometimes I do! Ask my kids) But guess what....you know it, all of you tinnitus sufferers! IT DOESN'T HELP!!!!! Oh Well.....I'm not ready to push up daisies so I will just keep on ringing and screaming until our wonderful world of science and medicine figures it out!!

I found many post hear interesting. Some one posted that these forums just make you depressed. I suppose that could happen but it was good to find quick answers and sadly a little commiseration! So Thanks for Sharing!!

 

[IvanRus]

Audiologist says that they don't make noise canceling devices in that range (a little over 12,000 Hz).

What kind of masking devices are you talking about? Not hearing aids?

Yes, they do not cover 12 kHz or higher, which is so important. This could help a lot with tinnitus.
Even hearing aids are still in the Stone Age today.

But we hope for miracles.

It's scary that there is no medicine. It's just nonexistent. There is no other such disease on Earth that there are no medicines at all for. Only tinnitus.

 

[brt]

rain sounds might help as they consist of higher frequencies, it helps me.

 

[Juan]

What kind of masking devices are you talking about? Not hearing aids?

Yes, they do not cover 12 kHz or higher, which is so important. This could help a lot with tinnitus.
Even hearing aids are still in the Stone Age today.

But we hope for miracles.

It's scary that there is no medicine. It's just nonexistent. There is no other such disease on Earth that there are no medicines at all for. Only tinnitus.

Actually there are a lot of diseases with no cure.. ALS, alzheimer, diseases that attack nerves etc

 

[Contrast]

Actually there are a lot of diseases with no cure.. ALS, alzheimer, diseases that attack nerves etc

they have tons of support and research which is cross discipline.

We have an invisible illness that gets thrown under the bus and con men like Pawel Jastreboff.

 

[Contrast]

Actually there are a lot of diseases with no cure.. ALS, alzheimer, diseases that attack nerves etc

they have scientific explanations for the cause of there disease, tinnitus does as well. But tinnitus communities like to pretend no one knows anything about tinnitus. ENT's like to pretend hearing loss doesn't exist if it's outside of the human voice range.

 

[Juan]

they have scientific explanations for the cause of there disease, tinnitus does as well. But tinnitus communities like to pretend no one knows anything about tinnitus. ENT's like to pretend hearing loss doesn't exist if it's outside of the human voice range.

I agree with you, but the other diseases I mentioned before kill people and that's why there is more money and research into it. My personal feeling is that in most cases hyperacusis has to do with harm or alterations of the haircells, the neural synapsis that drive sound to our brains and help distinguish language and interpret sounds, or hearing nerve damage. None of these things can be fixed nowadays so ENTs do not even bother to try to explain it or find answers.

 

[Contrast]

I agree with you, but the other diseases I mentioned before kill people and that's why there is more money and research into it. My personal feeling is that in most cases hyperacusis has to do with harm or alterations of the haircells, the neural synapsis that drive sound to our brains and help distinguish language and interpret sounds, or hearing nerve damage. None of these things can be fixed nowadays so ENTs do not even bother to try to explain it or find answers.

ENT's that aren't are doing a disservice by not being informed on there own medical discipline.

Research suggest a small minority of outer hair cell nerves act as pain receptors in painful hyperacusis.
they also use the term "Noxacusis" to distinguish between hyperacusis with pain and recruitment. (amplificaition)

https://www.ata.org/news/news/hyperacusis-related-damage-nerve-cells-inner-ear

 

[Juan]

ENT's that aren't are doing a disservice by not being informed on there own medical discipline.

Research suggest a small minority of outer hair cell nerves act as pain receptors in painful hyperacusis.
they also use the term "Noxacusis" to distinguish between hyperacusis with pain and recruitment. (amplificaition)

https://www.ata.org/news/news/hyperacusis-related-damage-nerve-cells-inner-ear

I stopped reading a lot of that stuff, but from my own painful personal experience I can tell you over time, it is like something dies in your hearing, and that's the way my hyperacusis "improved" turning into some degree of hearing loss. I guess it is cells that get damaged or some sort of damage to the nerve. Maybe the nerve gets de-myelinated.

 

[Contrast]

The problem is hyperacusis & tinnitus experts do not exist.

Probably one of the best otologist in the world, Charles Liberman said clearly he is not an expert on tinnitus and hyperacusis, no one is. Obviously his and the research of others gives insight, to get to that point to provide treatments but were not going to see any help for atleast a decade or more.

Obviously the few scientist now that research these topics put a dent in things, that's why I'm saying fund research and less priortize the TRT/CBT if you want to save lives.

We have to accept we are living in dark times.

One day there is probably going to be mind blowing treatments for these conditions but as of now the world is shit.

 

[Contrast]

I stopped reading a lot of that stuff, but from my own painful personal experience I can tell you over time, it is like something dies in your hearing, and that's the way my hyperacusis "improved" turning into some degree of hearing loss. I guess it is cells that get damaged or some sort of damage to the nerve. Maybe the nerve gets de-myelinated.

you can't just guess whats wrong, and should always go with what researchers suggest.

 

[Juan]

you can't just guess whats wrong, and should always go with what researchers suggest.

Here I cannot agree. Taking tests like MRI or loud hearing tests can only make hyperacusis worse and it is very unlikely one is going to find any answers.

I do agree with you that no one is an expert on hyperacusis nowadays, so why losing time chasing more answers?

It is good to discuss this from time to time, but it is not good to overthink or overworry about it

 

[Contrast]

John Hopkins researched showed evidence that a minority of OHC nerves act as secret cochlear pain receptors in response to very loud noises. From there they hypothesised inner ear damage drops the tolerance level so everyday noises hurt.

I've have to find the paper.


the way i explain research so amateurily is actually bad, I'm not qualified to be discussing these topics.
i would rather be getting back with the life of mine that just began before hearing damage ruined it.

 

[JohnAdams]

Hopefully be regenerating the hair cells, the normal signals from the new cells override the dumb cells and provide a stable signal that stops the tinnitus.

 

[Juan]

Hopefully be regenerating the hair cells, the normal signals from the new cells override the dumb cells and provide a stable signal that stops the tinnitus.

I once met a girl who worked on these things, regenerating cells. What she said (I dont know if it is true or not) is that on the tests the lab rats were developing tumors, so they cannot run these tests further on people, they didnt get to that stage.

She said the cells were repaired but then a tumor appeared.