Ideas and Suggestions for Future Episodes

[Jurger]

Hello,

Perhaps Stefan Heller from Stanford? He's pioneering and actually responded to an email I sent him, he's approachable and wants to help.

Oooops... forgot to say thanks.
Thank you for your hard work folks.

A thousand times this.

Also someone from the Bionics Intitute. They made the news around a year ago with a new method for nanoparticles in the inner ear.

"I used to say to my patients, forget it, not in my lifetime; you are not going to see a cure for hearing loss. Now, I'm back to dreaming again, and it's really exciting." Dr Sherryl Wagstaff (ENT surgeon and clinical collaborator)."

http://www.bionicsinstitute.org/restoring-the-magic-of-hearing/

https://www.abc.net.au/news/2018-11...ible-for-common-form-of-hearing-loss/10477498

 

[UKBloke]

There's something so compelling about the work that V S Ramachandran did with his Mirror Box treatment of Phantom Limb Pain that I can't help thinking there must be some important and potentially useful similarities between this and the presentation and treatment of tinnitus. I've actually posted a link to this incredible video in another area of Tinnitus Talk today but I'd like to post it again:



Although he doesn't appear to specialise in tinnitus it'd be fascinating to hear his views on it and even potential treatments. Could we reach out to him to see if he would give an interview? His contact details are on this page: http://cbc.ucsd.edu/people.html

 

[JohnAdams]

A future podcast has to involve @R. David Case and I.

 

[all to gain]

I've not listened to any of the Tinnitus Talk Podcast episodes yet.

Has anything been done on ototoxic medications?

1. How about getting Neil Bauman on? He wrote a book on the matter. I know some people on here maybe don't see him as legit as he isn't a medical doctor, but it would be good to get his take on the subject and why medical doctors know so little about it. And you could ask him what the medical community thinks of his work.

2. Someone form Nottingham University (UK) such as Professor David Baguley. He studies about ototoxicity:

• https://www.nottingham.ac.uk/medicine/about/clinicalneuroscience/people/david.baguley
• https://nottinghambrc.nihr.ac.uk/research/hearing/meet-our-hearing-research-team

Could also ask him why there is so little/no drug research being done in the UK to find a cure.

 

[JohnAdams]

Can you do a podcast with Julian Cowan Hill?

 

[Defiant-Decay]

Could you maybe get Sierra Domb and Dr. Peter Goadsby on to talk about visual snow and its relationship to tinnitus?

 

[Markku]

Could you maybe get Sierra Domb and Dr. Peter Goadsby on to talk about visual snow and its relationship to tinnitus?

Hey! Good idea As it happens, we've been in touch with VSI already last year and Sierra has said yes to being on the Tinnitus Talk Podcast. I'm confident we can get Dr. Goadsby to join her. I'm sure it's going to be a great episode!

 

[Badger19]

I second Stefan Heller. A brilliant and very nice person.

 

[Defiant-Decay]

Hey! Good idea As it happens, we've been in touch with VSI already last year and Sierra has said yes to being on the Tinnitus Talk Podcast. I'm confident we can get Dr. Goadsby to join her. I'm sure it's going to be a great episode!

THANK YOU SO MUCH.

 

[MrCrybaby]

Talking to Dr. Liberman from Mass Eye and Ear about his research on hidden hearing loss/synaptopathy and mechanisms of noise induced pain could be really informative and interesting. I think it would be good for more patients to be aware of his research.

 

[Contrast]

Deepak Chopra

The many worlds interpretation of Quantum Physics tells us that the particles that make up your damaged cochlea in this Universe are also existing in an alternative Universe where your cochlea is healthy and normal. You can tap into the realm of the Quantum and cure yourself!

 

[Contrast]

Talking to Dr. Liberman from Mass Eye and Ear about his research on hidden hearing loss/synaptopathy and mechanisms of noise induced pain could be really informative and interesting. I think it would be good for more patients to be aware of his research.

Okay seriously, you guys should go with Dr. Liberman and his research on cochlear neuropathy!

 

[serendipity1996]

Talking to Dr. Liberman from Mass Eye and Ear about his research on hidden hearing loss/synaptopathy and mechanisms of noise induced pain could be really informative and interesting. I think it would be good for more patients to be aware of his research.

Yess seconded. He's also appeared in a number of TV segments about hearing problems e.g a news report on Joyce Cohen and also other cases of severe hyperacusis so he seems very genuinely receptive to engaging with the patient community.

 

[Markku]

Frequency Therapeutics
http://www.frequencytx.com/

Would it be possible to invite Frequency Therapeutics to a podcast/video interview?

@Markku @Hazel

We will be interviewing Frequency Therapeutics in April!

Check the details here (including information on how to submit questions).

 

[aot]

Hey! Good idea As it happens, we've been in touch with VSI already last year and Sierra has said yes to being on the Tinnitus Talk Podcast. I'm confident we can get Dr. Goadsby to join her. I'm sure it's going to be a great episode!

Is the VSI interview still planned? I know things are crazy with COVID-19, but I'm just curious. (And a bad experience with my VS this morning has me a bit on edge.)

 

[humptydumpty69]

So, this might be a stupid question, but since I imagine there are others here besides myself who not able to listen to audio, is there any way that you guys could publish transcripts of some of the episodes? Perhaps you already do but I'm just ignorant to it? I'm really not trying to make more work for volunteers.

 

[Hazel]

So, this might be a stupid question, but since I imagine there are others here besides myself who not able to listen to audio, is there any way that you guys could publish transcripts of some of the episodes? Perhaps you already do but I'm just ignorant to it? I'm really not trying to make more work for volunteers.

Hey there, thanks for asking. Indeed, we do! It's an extra effort we make to accomodate those with hearing issues.

You can find the transcript on the episode page, by clicking the CC button to the right-hand side of the player (I've circled it below in red):

 

[vermillion]

I guess it might have been mentioned already on previous pages (I haven't read the whole thread), but an interview with Prof. Charles Liberman would be interesting as well, wouldn't it be?

 

[Lucifer]

Any possibility of interviewing the FDA?

 

[LostOutWest]

@Hazel, @Markku huge thank you for all you do for this community with these hopeful interviews.

Suggestion: on the heels of the wonderful FX-322 episode, it would be interesting to get Pipeline Therapeutics' CEO Carmine Stengone on the Tinnitus Talk Podcast. Their drug is not specifically testing for tinnitus as an efficacy endpoint, but it is focused on cochlear synapse repair and hearing regeneration. Perhaps we could get more information as to whether they believe their drug could help tinnitus.

 

[Michael01]

Suggestion: on the heels of the wonderful FX-322 episode, it would be interesting to get Pipeline Therapeutics' CEO Carmine Stengone on the Tinnitus Talk Podcast. Their drug is not specifically testing for tinnitus as an efficacy endpoint, but it is focused on cochlear synapse repair and hearing regeneration. Perhaps we could get more information as to whether they believe their drug could help tinnitus.

I'd second that.

Maybe also another interview with Frequency Therapeutics for updates on FX-322 and how's it going?

 

[Philip83]

Sound Pharmaceuticals?

 

[zozil_radical]

Maybe Dr. Karl Koehler would be interesting, if he could explain his research in a way that is accessible to non-experts. He does interviews/podcasts.

 

[Aaron91]

Talking to Dr. Liberman from Mass Eye and Ear about his research on hidden hearing loss/synaptopathy and mechanisms of noise induced pain could be really informative and interesting. I think it would be good for more patients to be aware of his research.

1 vote for Liberman.

Okay seriously, you guys should go with Dr. Liberman and his research on cochlear neuropathy!

2 votes for Liberman.

Yess seconded. He's also appeared in a number of TV segments about hearing problems e.g a news report on Joyce Cohen and also other cases of severe hyperacusis so he seems very genuinely receptive to engaging with the patient community.

3 votes for Liberman.

I guess it might have been mentioned already on previous pages (I haven't read the whole thread), but an interview with Prof. Charles Liberman would be interesting as well, wouldn't it be?

4 votes for Liberman.

And here's a fifth vote for Liberman. Perhaps you have already tried to make this happen or are already working on it, but if not, please, please try to get this man on the Tinnitus Talk Podcast. Perhaps Bryan Pollard can put us in touch?

I'd be more than happy to help with any prep for this, and if my ears can handle it, sit through the podcast on the day as well and jump in if needed.

 

[Nobody19]

Dirk De Ridder, and more precisely the Brai3n clinic in Belgium. They seem to offer good solutions to patients, but I haven't read any experiences about them:

https://www.brai3n.com/en/

Stefan Heller from the Stanford Initiative to cure hearing loss:

https://hearinglosscure.stanford.edu/research-team/

 

[Markku]

Professor Dirk De Ridder should be interviewed in an episode of Tinnitus Talk Podcast.

Dirk De Ridder, and more precisely the Brai3n clinic in Belgium. They seem to offer good solutions to patients, but I haven't read any experiences about them

Just confirmed: Dr. De Ridder will be joining us for the Tinnitus Talk Podcast this spring.

Next up, as previously announced, will be Otonomy in March.

 

[weab00]

Next up, as previously announced, will be Otonomy in March.

I wonder if they'll be allowed to discuss the recent trial delay?

 

[Nobody19]

Just confirmed: Dr. De Ridder will be joining us for the Tinnitus Talk Podcast this spring.

Next up, as previously announced, will be Otonomy in March.

I'm really looking forward to both episodes, keep up the good work!

 

[Aaron91]

1 vote for Liberman.

2 votes for Liberman.

3 votes for Liberman.

4 votes for Liberman.

And here's a fifth vote for Liberman. Perhaps you have already tried to make this happen or are already working on it, but if not, please, please try to get this man on the Tinnitus Talk Podcast. Perhaps Bryan Pollard can put us in touch?

I'd be more than happy to help with any prep for this, and if my ears can handle it, sit through the podcast on the day as well and jump in if needed.

In addition to Liberman, I would also like to see if we could have Paul Fuchs on the Tinnitus Talk Podcast - I'm sure others would too.

 

[VeryUnfortunate]

I agree with @Philip83. I think Sound Pharmaceuticals would be a good idea to interview as well.