Patient Involvement in Tinnitus Research — What Can Be Improved?

[Hazel]

At the end of March, I will be attending an ESIT (European School on Interdisciplinary Tinnitus Research) meeting in Milan. Tinnitus Hub is part of ESIT's supervisory board. You can find more information about ESIT here.

ESIT management has asked me to give a presentation during the meeting about how to involve tinnitus patients in research. And it got me thinking: What can be improved in this regard? Participation in clinical trials is the typical way of involving patients, but it hardly gives patients a say in how the research is conducted, and often even clinical trial participants – let alone the broader patient community – are not properly informed of research outcomes.

It seems to me that patients could be involved at various steps in the research process. I've listed the most obvious ones in the poll above – Please fill it in, because I will be presenting the results to the ESIT researchers!

Do you have any other ideas for how patients could be involved? Let us know, and we'll bring your input forward at the ESIT meeting!

 

[Starthrower]

Do you have any other ideas for how patients could be involved?

Doing podcasts with @Jack Straw and Tinnitus Hub/Tinnitus Talk to keep patients informed on research progress.

 

[Jack Straw]

Doing podcasts with @Jack Straw and Tinnitus Hub/Tinnitus Talk to keep patients informed on research progress.

Giving me more work I see

 

[Hazel]

Hey ho, just boosting this thread!

I think I already got enough for my presentation, but more data is always better, so anyone reading this who hasn't filled in the poll yet, please do!

Some interesting results so far, btw. I won't comment yet, since I don't want to influence new voters

 

[Jazzer]

Giving me more work I see

Yea - keep 'im at it,
you know what a lazy git he can be......!
(Oops.)

 

[PeteJ]

At the end of March, I will be attending an ESIT (European School on Interdisciplinary Tinnitus Research) meeting in Milan. Tinnitus Hub is part of ESIT's supervisory board. You can find more information about ESIT here.

ESIT management has asked me to give a presentation during the meeting about how to involve tinnitus patients in research. And it got me thinking: What can be improved in this regard? Participation in clinical trials is the typical way of involving patients, but it hardly gives patients a say in how the research is conducted, and often even clinical trial participants – let alone the broader patient community – are not properly informed of research outcomes.

It seems to me that patients could be involved at various steps in the research process. I've listed the most obvious ones in the poll above – Please fill it in, because I will be presenting the results to the ESIT researchers!

Do you have any other ideas for how patients could be involved? Let us know, and we'll bring your input forward at the ESIT meeting!

Can't they include more people in the trials?

Perhaps, explain in various ways, including plain language, what their explanation is for why you get tinnitus - or what theories they have?

Is there any way they could combine their efforts - but, is it mostly 'trying to be the one' that has the best treatment method/device - because, I always worry that when one is pursuing profit, if it's not humanitarian/altruistic, people suffering get lost in the loop.

I apologize if my questions/comments are not good or helpful.

 

[Greg Sacramento]

Excellent survey idea with ideal questions.

Completed the survey a couple of days ago and been thinking about Identification of research priorities and Updates on ongoing studies. Many times this isn't done with non public companies, so 5 stars for the importance of this survey.

For the last few months I have been talking to someone with full cervical and mandibular problems.
The mandibular condyle is a rounded projection at the end of the lower jaw, or mandible. This particular part of the lower jaw articulates, or unites, with the skull. It is actually better known as the condyloid process, which refers to the condyle itself and another part of the lower jaw. Caused often from arthritis and interactions to facet joints from a straightening C spine.

After all types of somatic physical research I thought that this may be a big part of the person's problem. A research article mentioned that an outpatient arthroscopic procedure cures many with tinnitus. I mention for this person to discuss with doctors either a jaw MRI or 3D cone beam study. A jaw MRI was done and the condyle was a problem so an arthroscopic procedure will be done.

The research article/study did not expand on other briefly mentioned identifications of injection treatment and/or muscle relaxers for neck facet joints. Both areas for treatment need to be discussed when tinnitus is present, not just the condyle. Nor has there been any updates from patient studies. When both areas are treated many have remarkable tinnitus reduction.

When our results of this survey are shared (ESIT) and taken notice by doctors/dentists then we have made great awareness to some of our needs.

Thank you to all involved.

 

[BreachOfEuphoria]

What you are doing here is great!

I filled out the poll.

I voted:
Participation in clinical trials
Participation beyond clinical trials (e.g. data collection, analysis, tools development)
Communication/dissemination of results

Does somatic tinnitus count? I will try and answer your questions as best as I can.

Do you have any other ideas for how patients could be involved? Let us know, and we'll bring your input forward at the ESIT meeting!

What could improve? If tinnitus sufferers were invited to the laboratory, hospital or wherever scientific data could be collected and then in co-operation with neurologists, ENTs, rheumatologists, chiropractors, physiotherapists and neuroscientists tests were carried out on the nervous system for example.

Check for things that can cause the somatic tinnitus.

I would be happy to be a human guinea pig so I could help humanity. If I'm going to commit suicide because of this I might as well help humanity first.

For example: Let's imagine that a patient A has tinnitus present ONLY because one single nerve is entrapped somewhere in the neck, jaw or elsewhere in the body.
Patient A wants to know what the root cause of his or hers somatic tinnitus is.

Is it not possible to do a nerve block on a certain nerve? Numb the nerve (with Lidocaine for example) and then ask patient A if the tinnitus is still there?

I know medical science is not always that simple but in some cases it IS that simple. And we have to start somewhere.

Please let me know if you can use my post at all.

 

[Jcb]

At the end of March, I will be attending an ESIT (European School on Interdisciplinary Tinnitus Research) meeting in Milan. Tinnitus Hub is part of ESIT's supervisory board. You can find more information about ESIT here.

ESIT management has asked me to give a presentation during the meeting about how to involve tinnitus patients in research. And it got me thinking: What can be improved in this regard? Participation in clinical trials is the typical way of involving patients, but it hardly gives patients a say in how the research is conducted, and often even clinical trial participants – let alone the broader patient community – are not properly informed of research outcomes.

It seems to me that patients could be involved at various steps in the research process. I've listed the most obvious ones in the poll above – Please fill it in, because I will be presenting the results to the ESIT researchers!

Do you have any other ideas for how patients could be involved? Let us know, and we'll bring your input forward at the ESIT meeting!

Chose my options for the poll. This sounds good. I know I keep saying it and sound like a broken record but I appreciate all of your hard work on here. I feel like you are all trying to find a way to help us, no matter how big or small and with the limited resources you have it's much appreciated (since I've had tinnitus I find it hard to put what I'm thinking into words so basically I'm saying you all are hard working and kick arse peeps and many of us appreciate this)

 

[BreachOfEuphoria]

Thank you for the likes!

I would like, in any way I can, to help.

 

[Alue]

Good question. I think identification of research priorities and participation beyond clinical trials are the two biggest for me. I'm tempted to put 'study design' but I understand why that's out of patient's hands. In previous clinical trials that I've been a participant in (the AM-101 trials), I think I can identify a few flaws in the study design that contributed to the inconsistent results.

 

[GregCA]

In previous clinical trials that I've been a participant in (the AM-101 trials), I think I can identify a few flaws in the study design that contributed to the inconsistent results.

Can you please elaborate on what those flaws were?

 

[Alue]

Can you please elaborate on what those flaws were?

The biggest one was the non standardized way they prepped for the injections. Some sites used phenol to numb the eardrum requiring just a little dab on the eardrum with no suctioning, other sites used lidocaine which always requires suctioning of the eardrum. A lot of us here know suctioning is very loud and, in my opinion, can cause further damage to people whose ears are already damaged (I know some ENT's don't believe so). The lidocaine itself can mute tinnitus temporarily, but I suspect a number of people that got worse after the injections got worse because of the procedure itself and not the drug.

I had a total of 18 shots into my ears (3 shots per round and 3 rounds). I got the real drug all three rounds and the only time I experienced any worsening was the first shot when the doctor put a little too much phenol in one of my ears and suctioned it out. I immediately got a new loud tone in that ear that faded to a very soft tone after about half an hour then went back to normal after a few days. One out of 18, there's no doubt in my mind it was the suctioning that caused an adverse effect for me.

 

[GregCA]

The biggest one was the non standardized way they prepped for the injections. Some sites used phenol to numb the eardrum requiring just a little dab on the eardrum with no suctioning, other sites used lidocaine which always requires suctioning of the eardrum. A lot of us here know suctioning is very loud and, in my opinion, can cause further damage to people whose ears are already damaged (I know some ENT's don't believe so). The lidocaine itself can mute tinnitus temporarily, but I suspect a number of people that got worse after the injections got worse because of the procedure itself and not the drug.

Oh that's an interesting point... certainly it seems they should avoid anything that could modify T in any way, other than the drug under test of course. But like you said: they probably think that suctioning can't impact tinnitus.

I had a total of 18 shots into my ears (3 shots per round and 3 rounds). I got the real drug all three rounds and the only time I experienced any worsening was the first shot when the doctor put a little too much phenol in one of my ears and suctioned it out. I immediately got a new loud tone in that ear that faded to a very soft tone after about half an hour then went back to normal after a few days. One out of 18, there's no doubt in my mind it was the suctioning that caused an adverse effect for me.

How did your ears heal from that many holes? Did they reuse existing holes when injecting again?

 

[Alue]

How did your ears heal from that many holes? Did they reuse existing holes when injecting again?

They healed just fine. For each phase they reused the hole from the previous day. I have no idea how doctors hands are that steady, I could never do that, but I did have great surgeons (neurotologists) for the trials. I've had my eardrums looked at a number of time since and doctors can't even tell that they were injected. Eardrums generally heal themselves very well.

 

[Johan_L]

After all types of somatic physical research I thought that this may be a big part of the person's problem. A research article mentioned that an outpatient arthroscopic procedure cures many with tinnitus. I

Can you link to this article? I am seeing an ENT tomorrow because of my jaw pains...

A lot of us here know suctioning is very loud and, in my opinion, can cause further damage to people whose ears are already damaged (I know some ENT's don't believe so). The lidocaine itself can mute tinnitus temporarily, but I suspect a number of people that got worse after the injections got worse because of the procedure itself and not the drug.

Oh that's an interesting point... certainly it seems they should avoid anything that could modify T in any way, other than the drug under test of course. But like you said: they probably think that suctioning can't impact tinnitus.

I don't know what to say when I read this. Going back to Hazel's original question: How can we educate ENTs/the tinnitus research community in these things that are "no brainers" for us sufferers? Of course suctioning is a risk for somebody with noise trauma and can impact tinnitus.

(With that said, my ENT understood that suctioning was not an option due to noise levels...)

 

[Kste Adams]

Can you link to this article? I am seeing an ENT tomorrow because of my jaw pains...

I don't know what to say when I read this. Going back to Hazel's original question: How can we educate ENTs/the tinnitus research community in these things that are "no brainers" for us sufferers? Of course suctioning is a risk for somebody with noise trauma and can impact tinnitus.

(With that said, my ENT understood that suctioning was not an option due to noise levels...)

It could be an interesting group project to develop something like Tinnitus for Dummies or What Tinnitus Sufferers Wish Their Doctors Understood. No amount of medical knowledge can substitute for actually living with the condition, but I think we could help close the gap. The worst part of tinnitus is that you can't control it and you can't get away from it. No audio files on the web can convey that feeling of being totally at the mercy of this awful condition.

 

[Zug]

At the end of March, I will be attending an ESIT (European School on Interdisciplinary Tinnitus Research) meeting in Milan. Tinnitus Hub is part of ESIT's supervisory board. You can find more information about ESIT here.

ESIT management has asked me to give a presentation during the meeting about how to involve tinnitus patients in research. And it got me thinking: What can be improved in this regard? Participation in clinical trials is the typical way of involving patients, but it hardly gives patients a say in how the research is conducted, and often even clinical trial participants – let alone the broader patient community – are not properly informed of research outcomes.

It seems to me that patients could be involved at various steps in the research process. I've listed the most obvious ones in the poll above – Please fill it in, because I will be presenting the results to the ESIT researchers!

Do you have any other ideas for how patients could be involved? Let us know, and we'll bring your input forward at the ESIT meeting!

Hey @Hazel, I went through the options, but I kinda disagree with the phrasing of one of the choices, so here are my two cents:

Raising money/resources for research. You wrote allocation, I'm thinking about getting involved in raising the resources. I'm also not talking only about donations, but tinnitus patients can try to lobby / intervene with public representatives to raise money for research/fund courses in med schools, etc., raise money from a broader audience, and so on. Allocation is often a more technical decision.

Good luck!

 

[ganga66]

Involving patients at a local level upon diagnosis would be beneficial. Ask what effect is the tinnitus having on your work life, home life, ability to cope stress levels. Signpost to local groups and other sufferers. All too often ENT and audiologist dept. do not see patients as individuals, one size does not fit all.