Episode 15: Objectifying Tinnitus — The Bionics Institute

[Tinnitus Talk]

Hey there!

It's been too long since our last episode, we are acutely aware of that. There have been some challenges at a personal and professional level to overcome, but we are back in full swing, with what we believe to be a very exciting episode!

You may have heard people say that one of the obstacles to developing a cure (or at least better treatments) for tinnitus is the lack of an objective measure. There is currently no clinical test that can be applied to assess whether someone has tinnitus and how severe it is. Of course, you can just ask the person, but that's considered a subjective measure, and industry and regulators need something more consistent when it comes to measuring the effects of new treatments.

In this episode, we speak with Mehrnaz Shoustarian to cover the technical ins and outs of the objective measure being developed by the Bionics Institute. We discuss the underlying theories the work is based on, the future commercialisation of the technique, and the ultimate impact the Bionics Institute is hoping for.

For our Patrons, we also have video footage of this interview. Support our work!

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Listen on:

• Tinnitus Talk Podcast (incl. timestamps and transcript)
  
• SoundCloud
  
• iTunes
  
• Spotify

We welcome any discussion, but please keep the following in mind when commenting:

• Off-topic comments, i.e. not directly responding to the content of the podcast, will be removed. So please do listen before commenting!
• While we welcome constructive criticism on ideas or policies, we do not tolerate direct attacks on individuals.

This episode was produced by @Markku and @Hazel. Transcription was done by @Liz Windsor and @Andrea Rings. Do you want to volunteer as well? Let us know!

We thank our Patreon supporters for making this podcast possible.

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[Leila]

Thank you very much for taking the time to conduct this interesting and exciting interview and sharing it with us.

I totally agree in that we need far more precise and less invasive means of measuring tinnitus noises than what is being used at the moment. It would be helpful, too, if the people conducting these tests were a little more informed / sensitive to tinnitus patients who might get triggered by the sounds that the instruments are emitting or the tests themselves.

What I mean, when I say the tests determining the tinnitus noise(s) are inaccurate is that there are very few noises and levels of volume to choose from, so anything offering a broader spectrum to choose from would be very much appreciated by me.

I've got three tinnitus noises, one high pitched (think: dentist) and two lower buzzing noises (think: barely there sub-woofer bass sound; think: approaching sports plane). According to the test the buzzing noises are pretty much the same, which they most definitely are not, because there was nothing else to choose from so I was told to use what came closes.

So, yes, in regards to this I would love a means of determining tinnitus noises that actually represented my noises correctly because I'm sure it will affect treatment, meager as it is.

What has been bugging me, however, even though I'm well aware that objective determination is of the utmost importance, is the thought that an algorithm may eventually determines the severeness of something (my tinnitus) that in the end only is subjectively determinable.

Let me give you an example: When I only had two tinnitus noises, the high pitch and the very low sub-woofer buzzing, it was the buzzing that was giving me far more trouble than the high pitch even though the high pitch ought to be far more annoying. But for some reason my brain decided, the high pitch was okay-ish while the low buzzing sound is driving me up the walls and out of my mind.

So what I'm worried about is that some machine will tell me / my doctors / my insurance that the noise I'm hearing shouldn't really bother me at all (I'm exaggerating here) and therefore no treatments etc. will be necessary / covered because I'm blowing things out of proportion.

We are all individuals who, for the most part, have found ways to live with out tinnitus noises and who have good and bad tinnitus days, and a noise that might be unbearable to one will be shrugged off by an other; and I would hate to have this individual adaptability used against us because of an algorithm classifying person A's tinnitus as minor because that's what it is in comparison to person B, G, K, and V's, when to person A it still is the worst thing that ever happened to them.

Maybe that's already being taken into consideration and I'm worrying about nothing, it's just something that popped up in my mind when listening to the interview and I would like to hear if I'm the only one who had that thought.

 

[Gabriel5050]

I liked the episode.

What stood out to me is that they started from, what seems to me, a small pool of participants. Admittedly, it was a feasibility study. But the Bionics Institute seems optimistic about their progress so far.

I think there must be something to it after all, if they managed to put together this multidisciplinary team with machine learning software part, the scientists and the commercial team.

It seems like it will still take a a couple of years before any of us will get tested at a clinic in their vicinity. Thinking about that future is interesting. For us it will be sort of telling us what we know already, but it will make tinnitus more "real" and "palpable", if you will, with an objective test. But the more important part, it will help scientists and researchers further develop treatments and cure(s) .

P.S. Sorry if my choice of words was weird. English is not my native language.

 

[SallyM]

I wish the ENTs I saw had been able to measure my tinnitus like this! I need my doctors to "see" how loud my tinnitus is, it's not your garden variety! Thank you for the podcast!

The trial will end roughly by the end of 2021.

The Bionics Institute will analyse my data using their algorithms, which will ascertain its severity, in mid January. I'll be able to post any information I receive.

I was fitted with a cap, and exposed to quiet, pink noise, and visual stimuli on a computer at certain intervals.

@DebInAustralia did you receive your data by now? You were in the trial? What did the Bionics Institute tell you about your tinnitus?

 

[DebInAustralia]

I wish the ENTs I saw had been able to measure my tinnitus like this! I need my doctors to "see" how loud my tinnitus is, it's not your garden variety! Thank you for the podcast!

@DebInAustralia did you receive your data by now? You were in the trial? What did the Bionics Institute tell you about your tinnitus?

I won't get the results till they've finished collecting and analysing the data in March.

Yes, I was in the trial.

 

[ActorFred]

Really interesting stuff, well done to all involved.

What I found interesting were two things; that the vision and hearing pathways are linked and, furthermore, I wonder who the two companies they're working with are.

 

[Cabbie]

Yes I agree that in the long run if the doctors and researchers knew what people had to live with, there might be more efforts put forth to find the causes of tinnitus, and better treatments.

There are some that truly suffer every single day. I've had tinnitus (jet engine sounds) now for more than 4 years.

 

[DebInAustralia]

 

[JPGL]

Yes I agree that in the long run if the doctors and researchers knew what people had to live with, there might be more efforts put forth to find the causes of tinnitus, and better treatments.

There are some that truly suffer every single day. I've had tinnitus (jet engine sounds) now for more than 4 years.

I think the same. It would be great if this damn disease could be objectively measured, to somehow make it visible and give it the medical attention and importance it deserves, so that it would be recognized and we would be able to access genuine and legitimate treatments that could benefit us.

 

[DebInAustralia]

Excerpt from the Bionics Institute newsletter: