To a practitioner, there's all the difference in the world between an approved evidence-based therapy and research. If it is approved, they'll offer it.
Frequency Therapeutics — Hearing Loss Regeneration
- Thread starter RB2014
- Start date
How could FX-322 cure tonic tensor tympani syndrome? In effect, FX-322 acts on the inner ear whereas the TTTS is a problem originating in the middle ear.
The person who was cured by Audion is perhaps a "legend", what do you think?
Audion still has not released the results which may be evidence of a lack of effectiveness of the treatment.
The person who was cured by Audion is perhaps a "legend", what do you think?
Audion still has not released the results which may be evidence of a lack of effectiveness of the treatment.
MemberI don't know where my lowest tinnitus tone is but I tried a sample 6kHz tone and it seems to be right around there (or more likely an octave, like 12kHz). If it bottoms out around 6kHz there then it should be good for me but it doesn't have to go much lower than that to hit them all. Even if all it did was knock out tones above 10kHz it would probably help me a lot as those are the hardest for me to mask.
- May 2, 2020
- 202
- Tinnitus Since
- 01/2019 T, 04/2020 H
- Cause of Tinnitus
- Headphones/Car Alarm/Immune Response?
The same thing happened to me. I was blown away. The guy was a neuro-otologist and when I asked what he thought about regenerative medicine he started talking about stem cells in chimpanzees. I think these guys spend years solving the same 7-8 common problems every day and get complacent about advancement.
- Sep 21, 2016
- 1,051
- Tinnitus Since
- 2011 - T, 2016- H, relapsed 2019
- Cause of Tinnitus
- noise-induced
Or does TTTS arise as a consequence of damage to the inner ear in the cochlea thus triggering middle ear symptoms? It seems like many cases of TTTS arise from acoustic trauma therefore repairing the cochlear damage might help alleviate it.
- Mar 14, 2020
- 180
- Tinnitus Since
- 12/19
- Cause of Tinnitus
- Noise Exposure + Viral Infection
I wouldn't worry about this too much. It's one anecdotal experience with a single ENT.
To be honest she doesn't seem like a good ENT either: how can you tell someone suffering that they shouldn't expect a cure while at the same time not bothering to be aware of current research?
Seems nihilistic an inconsiderate to be honest. Here you are suffering and she doesn't seem to care. "Don't expect a cure and I don't know anything about present research!". Ridiculous.
I have no clue why ENTs don't care about current research such as FX-322 and Audion Therapeutics.
You'd think they would keep up to date and when they see new patients let them know even though there might not be a cure now there are companies that are working on regenerating hair cells such as Frequency Therapeutics and Audion which should be out at the earliest a couple of years from now.
Those new patients are probably scared about having tinnitus and the ENTs should make sure they are calm and letting them know about new research.
You'd think they would keep up to date and when they see new patients let them know even though there might not be a cure now there are companies that are working on regenerating hair cells such as Frequency Therapeutics and Audion which should be out at the earliest a couple of years from now.
Those new patients are probably scared about having tinnitus and the ENTs should make sure they are calm and letting them know about new research.
- Jan 5, 2020
- 90
- Tinnitus Since
- 2011, Spike 2019, Spike 2020
- Cause of Tinnitus
- 1e Loud Music, 2e earwax irrigation, 3e padel tennis
Another Dutchman for the group travel to the U.S. to get FX-322 shot in the ear. You hear that @Christiaan.
F... those ENT's they dont care about S... I wish they would have tinnitus just for one day, so that they know how bad it is.
- Dec 21, 2019
- 319
- Tinnitus Since
- 2014, 10/2019
- Cause of Tinnitus
- School Band, Noxious Car Radio
The reality isn't that ENTs "don't care" it's that their job has much more to do with physical issues of the head and neck than phantom noise perceptions. I saw one for breathing issues, for example. Really an otologist is the one who we would get referred to for treatment I think. They do transtympanic injections and such.
If I don't have an otologist in my local area, could an ENT specialist still do the injections when FX-322 comes out?
Would it take a lot of time to train these ENT specialists to inject FX-322 in the ear?
Would it take a lot of time to train these ENT specialists to inject FX-322 in the ear?
Intratympanic injections are already routine for many ENTs (Meniere's patients get them now commonly, for instance).
Just call and ask around.
ENTs solve problems??? Could have fooled me. That statement is mostly true, I get that on rare occasions they will surgically remove tumors.
- Apr 6, 2020
- 1,031
- Tinnitus Since
- 2016
- Cause of Tinnitus
- 2016: headphones, 2020: worsened thanks to Rammstein
Ah, alright. The more the more, the merrier! @Fields, If you're really, really eager for a shot, you can jump the FX-322 train (or airplane!) with us
@BBakkers
Not only ENTs are sometimes inconsiderate, I might add. When I first got tinnitus in 2016, my GP wouldn't even refer me to an ENT or Ontologist, because ''it's a minor thing and you will get used to it''. Well, that thing that was once minor has gradually become a huge buzzkill. Had I been better informed earlier in the day, I would have taken more precautions (not going to indoor concerts, the use of headphones, avoidance of ototoxic drugs, etc,). It's time people like them take it more seriously.
@BBakkers depending on the American price of healthcare I might consider this 
Exactly this. I understand that not every specialist has the time to thoroughly keep up-to-date on every new research that's being done, but my ENT flat-out rejected that any work is being done on hearing regeneration.
Yeah, I was quite bothered by this. Nor did it strike me as being very professional.
I feel like when people get tinnitus and hyperacusis you get to see the doctors and ENT specialists' true colours as the majority of those doctors and ENT specialists show a lack of empathy with our condition.@BBakkers depending on the American price of healthcare I might consider this
Exactly this. I understand that not every specialist has the time to thoroughly keep up-to-date on every new research that's being done, but my ENT flat-out rejected that any work is being done on hearing regeneration.
Yeah, I was quite bothered by this. Nor did it strike me as being very professional.
Does anyone think FX-322 will help treat reactive tinnitus/hyperacusis? My baseline is fairly low but my tinnitus reacts to all external noise.
WickedCarnival
Member
- Aug 16, 2018
- 68
- Tinnitus Since
- Late Autumn 2016
- Cause of Tinnitus
- Unsure between azithromycin or viral infection
It's a case of "complacent doctor arrogance." Not to make a blanket statement for all ENTs, but it seems a lot of the older ones or middle aged have dug themselves in a clinical rut where they just don't care about research as much as going through the day to day motions and collecting a paycheck. Their comfort is more important than their patients at that point.
Noise can do it, too. Unfortunately there isn't a great antemortem test for it yet.
You know it when your audiogram is normal and you hear speech well in quiet BUT find it difficult to understand speech in noisy, loud environments. The theory is majority of your haircells are there, so no problem with transmitting of signal but the signal that is transmitted goes through these synapses. Before there were perhaps 100 synapses transmitting this signal, now there's only 30 synapses transmitting that signal. There is still no problem to decipher the signal in quiet of course, because the haircells are still there. However with a noisy background and a weaker signal the problem of synapse damage becomes obvious... because you can hear but you cannot understand. Just to put it in a simplistic way.
It's not even that simple at all, you would have to have synaptopathy at a variety of important speech frequencies (and not above) for you to even notice that effect.
If there are, the NDA, if they followed it, specifically precluded posting about it.
There might be someone who has participated in the clinical trials but can't tell us.
A good way of finding out who might have been in the trial is looking at old posts and seeing when they last posted on the forums as they could have been cured and that's why they don't go on the forums anymore.
Frequency just tweeted this:
"Sensory cells in the inner ear are needed to help you hear – certain hair cells amplify and tune incoming sound, while others convert sound into electrical impulses that are relayed to the brain. Over time, damage to these cells can impair our hearing. bit.ly/2WRLpKq"
Clearly referring to IHCs and OHCs.
"Sensory cells in the inner ear are needed to help you hear – certain hair cells amplify and tune incoming sound, while others convert sound into electrical impulses that are relayed to the brain. Over time, damage to these cells can impair our hearing. bit.ly/2WRLpKq"
Clearly referring to IHCs and OHCs.
- Mar 14, 2020
- 180
- Tinnitus Since
- 12/19
- Cause of Tinnitus
- Noise Exposure + Viral Infection
It seems like it's mainly speculatory how much one's noise-induced hearing loss is hair cell death related and how much is synapse related.
I don't know as much as @FGG but I suspect that there is probably a fair amount of both at play.
My plan is to get FX-322 upon release, which gives new hair cells with their respective synapses. In theory this should at least improve the ratio if disconnected to connected synapses, which I see as a plus when it comes to synaptopathy.
When an actual synaptopathy treatment comes out, I'll do that as well to cover my bases.
Then it's going to be high fidelity earplugs anytime I'm in an environment louder than a movie theater, for the rest of the foreseeable future. I keep them on my keyring.
I saw this as well on Frequency Therapeutics Twitter page. I do believe FX-322 does restore both IHCs and OHCs which should help with hyperacusis and tinnitus when they were talking about the amplification and tuning incoming sound.
I wish Audion Therapeutics could have been more outgoing and actually talk about more how their drug works.
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