Looking for Feedback — Drs Office Idea

[awbw8]

Hello there everyone!

You may have spied some of my research requests on the forum. In speaking with some of the fine people of TT and Tinnitus patients not on the forum, I've been trying to find a way I might add something positive to the lives of those with tinnitus.

I noticed that while not every tinnitus patient ends up on internet support forums, and some even avoid them because it makes them feel sad or scared or too focused on it, almost every tinnitus patient ends up at the doctor's office at one point or another, whether they are severely bothered or barely bothered at all. This is one of the first steps many take in trying to figure out what's up.

Another thing I noticed in these interviews (and through my own experience and just from being part of the TT community for years) is that those initial doctor's appointments are A. really pivotal in providing care and B. in setting the tone for most of the beginning of a tinnitus journey C. Most doctors (of course there are exceptions) are not trained/or do not deal with tinnitus patients who are in significant distress in the best possible way.

SO (if you have read all that, I THANK YOU) I want to find a way to put together something small - likely a physical booklet - that I could distribute to doctor's offices so that when a T patient does come into an office, they have something useful and positive to look at, and even the busiest doctor has something positive to offer.

Obviously this a delicate/complex project, but I'm pretty dedicated and think I could make it happen, though on a small scale at first.

That said, I'm curious to hear from all of you, do you think this would have been useful to you as a patient with tinnitus in those early doctor appointments? What would you have liked to have read? Keep in mind that it would likely be more about inspiration and hope than about treatment, since a doctor might not be able/willing to put out a book of treatments, but perhaps it would have portions of success stories, quotes, ways to connect with others who have T so you feel a bit less alone.

I would be SO grateful for any thoughts you all have.


THANK YOU!

 

[awbw8]

@glynis @linearb @Zug @Markku @Steve @derpytia - I'm tagging a few opinionated thoughtful people I can think of - I would really love feedback <3

 

[Bill Bauer]

I want to find a way to put together something small - likely a physical booklet - that I could distribute to doctor's offices so that when a T patient does come into an office, they have something useful and positive to look at

Of course something like that would be very helpful, but I doubt many doctors would agree to hand it out to their patients.

 

[awbw8]

Of course something like that would be very helpful, but I doubt many doctors would agree to hand it out to their patients.

Hi Bill!

I think there are ways we could work with doctors. Would every one - probably not. But doctors put all kinds of pamphlets in their offices. I think I have the ability to work with a few in NYC.

Assuming someone were to allow it in their space - what are your thoughts? What would have been helpful for you to see in it early on?

Thank you!!

 

[Bill Bauer]

What would have been helpful for you to see in it early on?

I had already given it a lot of thought. Here is what I came up with:
https://www.tinnitustalk.com/thread...itus-recently-this-info-will-be-useful.25741/
The list is not limited to the tips in the first post. There are a total of 27 tips, spread across multiple posts.

I believe that doctors in North America might be hesitant about appearing to endorse anything like this (even if it is just a pamphlet), as they would be opening themselves up to possible lawsuits...

 

[derpytia]

That said, I'm curious to hear from all of you, do you think this would have been useful to you as a patient with tinnitus in those early doctor appointments? What would you have liked to have read? Keep in mind that it would likely be more about inspiration and hope than about treatment, since a doctor might not be able/willing to put out a book of treatments, but perhaps it would have portions of success stories, quotes, ways to connect with others who have T so you feel a bit less alone.

I would be SO grateful for any thoughts you all have.


THANK YOU!

I would say that what I needed the most and didn't get at my first appointments was a doctor that was even halfway knowledgeable about T. Even if you give a doctor a pamphlet to hand out to patients, it kinda feels like a slap in the face if that's ALL the doctors do. Imagine walking in and having a doctor say "Well I don't know much and can't help you but here's a handy pamphlet."

What needs to happen is doctors getting at least a little bit educated in what T is, what causes it, what research is being done, and MOST IMPORTANTLY, where to recommend their patients if needed. And perhaps a little empathy training wouldn't be remiss either.

That's where I would start if asked me based on my own experiences. So perhaps not just a pamphlet or booklet for the patients but one for doctors as well. Because even though doctors have a lot of education, they should be reminded sometimes that knowledge is constantly growing and that in order to be the best doctor they can be, they need to constantly educate themselves.

 

[awbw8]

@Bill Bauer & @derpytia thank you for your thoughts. I agree, @Bill Bauer that it's very unlikely that even a deeply empathetic doctor would be able to post/share/sanction advice with the freedom many might here, and I don't blame them for that, but thank you for sharing your post. It's wonderful that you put that together for everyone here and took the time to write and think about that in such detail.

@derpytia I have experienced myself and know that many others have also felt as you have. I am hoping that I might find a doctor or two who might chat with me and create something that would serve the tinnitus community and also be sanctionable by a physician. Maybe that will mean something other than medical advice, but even something that feels hopeful as a point of contact. Certainly not "here's a book good luck to you," as you said I think that would be rather crass. However, even the existence of a partnership like that can plant little seeds of change, so I'll keep poking around and see what I can make happen because I know those first dr. appointments really make a difference, good or bad. Was there anything else when you first got T that really helped you? Perhaps not on a medical front, but something in your memory that stands out as one of the brighter spots in a very dark time?

Thank you, both <3

 

[Markku]

Great initiative, @awbw8

The BTA has done something like this with their dissemination of tinnitus packages to UK GPs.

You may want to reach out to them for their thoughts, they're a bunch of great people.

But personally, here's one idea to include in such a booklet/pamphlet:

Have a YouTube / Vimeo channel where you collect tinnitus success stories in video format (this is something we're going to be doing too, but might also work nicely for your project even if they're not the ones we collect).

Feature those success stories in the booklet - with a link to the channel.

In my early days, I would have loved to see more people discuss tinnitus, their experiences, overcoming it.

I may have other ideas but I rather discuss them with you over a chat later on. I definitely feel there is demand for this project, and I also feel when done right, even the US doctors can hand out the information without any fear of legal consequences.

 

[glynis]

I'm in the UK and our doctors point people in the direction of the BTA website.
Be great to have TT and TH mentioned also...

 

[awbw8]

@Markku That's a great thought. I had considered the key to it being meaningful quotes of positivity/success from patients and perhaps also doctors if I could get them on board.

@glynis I agree, if I can find a way to collaborate with ATA/BTA/doctors/TT etc. in a way that everyone felt comfortable with and proud of that would be extra awesome.

Will def send you a message after Tinnitus Week Markku, I'm sure you're super busy right now

 

[attheedgeofscience]

That said, I'm curious to hear from all of you, do you think this would have been useful to you as a patient with tinnitus in those early doctor appointments?

I recall the frustration of not knowing the reason for my life-long tinnitus to get worse (back in April 2013). Got seen by several ENTs and passed the standard 0-8 kHz hearing test. It was only by chance that – at the University Hospital in Leipzig – I carried the audiogram from the audiologist back to the ENT myself. I therefore had a chance to see it (and that's when I saw it only went up to 8 kHz). Now, I knew back then that humans can hear up to about 20 kHz, and so when the ENT said my hearing was fine, I was slightly skeptical and started to read up on audiology. Well, you know the rest of the story...

Basically, in a nutshell, I ended up seeing tons of specialists because I was told my hearing was normal and therefore the cause of my tinnitus had to be non-auditory related. So the message would be to physicians: rely less on audiometry and more on patient history – specifically a history of noise exposure. Some cases are pretty straightforward (i.e. going to an AC/DC concert with suicidal tinnitus as a new lifelong companion afterwards); other cases are more subtle e.g. years-and-years of listening to semi-loud music on mp3-players ("semi-loud" in order to block out background noise). The average person won't suspect anything because of exactly the fact that they have been doing it for years.

As many as 90% of tinnitus cases are noise-induced. So in absence of evidence to the contrary, assume it is noise-related and start asking questions about the person's listening habits (e.g. do you go to clubs regularly, have you ever had ringing in your ears before from a night out, and so forth...).

That would be my advice. Also, the thorough material from TRI is something any tinnitus sufferer should bring with them when they visit the ENT...

 

[Starthrower]

So the message would be to physicians: rely less on audiometry and more on patient history – specifically a history of noise exposure.

For the other 10% maybe consider:

Any recent dental history such as surgeries. Also if they have not been to a dentist for a possible issue. Also include investigating recent/past sinus problems.

 

[awbw8]

@Starthrower and @attheedgeofscience have either of you read this? I just became aware of this myself and am curious on others' thoughts. It's the clinical guidelines for ENTs for tinnitus:

http://journals.sagepub.com/doi/pdf/10.1177/0194599814545325

 

[attheedgeofscience]

@Starthrower and @attheedgeofscience have either of you read this? I just became aware of this myself and am curious on others' thoughts. It's the clinical guidelines for ENTs for tinnitus:

Yes – as, it happens, I have on occasion referred to the US Guidelines also (example below):

www.tinnitustalk.com/threads/i-could-really-use-your-insights-and-advice.12022/#post-147778

For TAW 2017 (i.e. last year), the BTA also promoted their guidance geared towards clinicians via a BBC interview featuring Mr. Stockdale (you can see a mention of that at 0:22):



So, to be honest, I am not sure how much of a need there is to produce more material (it's already there). The challenge is more one of getting clinicians to actually read the stuff that's out there (incl. research on hidden hearing loss). Lack of knowledge of "hidden hearing loss" is the very reason young people are underdiagnosed with noise-induced hearing loss. And if the ENT doesn't know about it, he/she will miss the diagnosis (needless to say). You can read more about that via literature such as the following:

www.frontiersin.org/articles/10.3389/fnagi.2016.00293/full

Lastly, tinnitus is (and likely will be) considered a non-serious disorder. It is just not in the mindset of a physician to be concerned with tinnitus. So pick your battles wisely.

 

[jimH]

Lastly, tinnitus is (and likely will be) considered a non-serious disorder. It is just not in the mindset of a physician to be concerned with tinnitus.

I certainly hope that perception changes! Tinnitus is the number one disability of veterans:

https://www.military.com/benefits/v...us-is-number-one-disability-for-veterans.html

The fact that we have a problem with many veterans commiting suicide because of PTSD makes me wonder what percentage of them had Tinnitus?:

https://www.militarytimes.com/veter...dy-finds-20-veterans-commit-suicide-each-day/

Additionally, "Suicidal Ideation" is very common among people with chronic severe Tinnitus. I'm convinced that is true after reading many posts here over the last few years. Although, that does not mean that they will eventually go through with it.

https://journals.lww.com/thehearing...l_Ideation_Among_Patients_with_Chronic.6.aspx

 

[attheedgeofscience]

The fact that we have a problem with veterans commiting suicide because of PSTD makes me wonder what percentage of them had Tinnitus?:

Well, you can get some indication of that via this post (which shares the links to the Korean study on tinnitus related-suicide):

www.tinnitustalk.com/threads/why-you-shouldnt-be-afraid-of-suicide-stories.23862/#post-275711

 

[awbw8]

Yes – as, it happens, I have on occasion referred to the US Guidelines also (example below):

www.tinnitustalk.com/threads/i-could-really-use-your-insights-and-advice.12022/#post-147778

For TAW 2017 (i.e. last year), the BTA also promoted their guidance geared towards clinicians via a BBC interview featuring Mr. Stockdale (you can see a mention of that at 0:22):



So, to be honest, I am not sure how much of a need there is to produce more material (it's already there). The challenge is more one of getting clinicians to actually read the stuff that's out there (incl. research on hidden hearing loss). Lack of knowledge of "hidden hearing loss" is the very reason young people are underdiagnosed with noise-induced hearing loss. And if the ENT doesn't know about it, he/she will miss the diagnosis (needless to say). You can read more about that via literature such as the following:

www.frontiersin.org/articles/10.3389/fnagi.2016.00293/full

Lastly, tinnitus is (and likely will be) considered a non-serious disorder. It is just not in the mindset of a physician to be concerned with tinnitus. So pick your battles wisely.

I'm more interested in appealing to the people who happen to also be physicians rather than adding more science to the plate. It's not that I don't think that is critical, I do, but I know it's not the most useful way for me personally to add to helping this problem. I'd like to find a way to reach patients and help physicians understand how critical their moment in the patient journey is despite the fact that they often cannot offer a cure. So yes, it is definitely important to pick battles wisely.

Thank you so much for your input, it's really useful!

 

[jimH]

What would you have liked to have read? Keep in mind that it would likely be more about inspiration and hope than about treatment, since a doctor might not be able/willing to put out a book of treatments, but perhaps it would have portions of success stories, quotes, ways to connect with others who have T so you feel a bit less alone.

1. Something that would have provided me with some hope and encouragement that people with chronic Tinnitus can still have productive and satisfying lives.

2. As you stated: "success stories, quotes, ways to connect with others who have T so you feel a bit less alone."
Incorporating @Markku's suggestion "YouTube / Vimeo channel where you collect tinnitus success stories in video format. Also providing info regarding TT and TH as @glynis recommended.

3. Provide specific coping methods and techniques that have proven to be helpful and work for many Tinnitus patients.

 

[awbw8]

1. Something that would have provided me with some hope and encouragement that people with chronic Tinnitus can still have productive and satisfying lives.

2. As you stated: "success stories, quotes, ways to connect with others who have T so you feel a bit less alone."
Incorporating @Markku's suggestion "YouTube / Vimeo channel where you collect tinnitus success stories in video format. Also providing info regarding TT and TH as @glynis recommended.

3. Provide specific coping methods and techniques that have proven to be helpful and work for many Tinnitus patients.

Thank you @jimH This is incredibly helpful! I really appreciate your insights!

 

[Starthrower]

I'd like to find a way to reach patients and help physicians understand how critical their moment in the patient journey is despite the fact that they often cannot offer a cure.

This is a huge job awbw!! I hope your plan can work. We can try.

Lastly, tinnitus is (and likely will be) considered a non-serious disorder. It is just not in the mindset of a physician to be concerned with tinnitus. So pick your battles wisely.

How do we get past that aspect? I have worked with my general physician for a long time. The problem is most medical doctors are now a part of some big organization like a local hospital and they now have limitations placed on their services.

After my doctor helped me we started a little side work (non-paying). He would send me patients to talk with. The only limit I placed on this was that the patient could not be suicidal (because of my past experiences). It worked for a while. I would have contacts for them. I would put them in contact with the ATA. I had a personal professional friend at OHSU who would take calls any time.

Then everything changed. Oregon Health and Science University ended their tinnitus clinic practice. The ATA moved towards research rather than patient/member help. And now the ATA is headquartered in D.C. But they have changed their mission statement back towards helping patients/members. But there isn't much money for funding anything.

Our resources are drying up slowly.

That is why this site and Tinnitus Hub as an actual non-profit organization is so important.

And it has to be pointed out that neither Steve or Markku take any profits or have any profit making "schemes" in their business plans. It is all for us. Tinnitus people.

I think I rambled on...sorry awbw.

 

[attheedgeofscience]

How do we get past that aspect?

I do not know. But I do know how humanity tends to work: problems ("the pain") sometimes need to grow large enough before they begin to be dealt with. Global warming and environmental pollution are good examples of that. Human beings tend to be short-sighted rather than adopting a long-term perspective. That's just the way it is.

But there isn't much money for funding anything.

The ATA has revenues around one million dollars per year (about 800-900 times less than organizations funding stroke research or cancer). Suppose an outsider, but sentient being like "Sofie the Robot" was asked to comment on whether she thinks tinnitus is a problem that should be addressed. What conclusion might she be inclined to reach, do you think – when examing how many people have the condition versus the amount of donations collected. Being a rationally thinking entity, I am pretty sure that Sofie would present the argument that tinnitus probably isn't a big deal since so few contribute – that would be my guess, at least...

 

[Starthrower]

I am pretty sure that Sofie would present the argument that tinnitus probably isn't a big deal since so few contribute – that would be my guess, at least...

I agree...

I used to do a lot of work with the OHSU Tinnitus Clinic in fund raising. One guy took on the idea to ride his bike across his state and get donations for each mile. I agreed to match each of his donors. It was sad that very few thought tinnitus was something deserving of high buck donations. We were able to help the clinic with necessary funds to keep it open for a while.

Then boom. The university closed the clinic taking that money with it.

Right now I have brain whiplash from reading the could be worse thread....

 

[awbw8]

This is a huge job awbw!! I hope your plan can work. We can try.



How do we get past that aspect? I have worked with my general physician for a long time. The problem is most medical doctors are now a part of some big organization like a local hospital and they now have limitations placed on their services.

After my doctor helped me we started a little side work (non-paying). He would send me patients to talk with. The only limit I placed on this was that the patient could not be suicidal (because of my past experiences). It worked for a while. I would have contacts for them. I would put them in contact with the ATA. I had a personal professional friend at OHSU who would take calls any time.

Then everything changed. Oregon Health and Science University ended their tinnitus clinic practice. The ATA moved towards research rather than patient/member help. And now the ATA is headquartered in D.C. But they have changed their mission statement back towards helping patients/members. But there isn't much money for funding anything.

Our resources are drying up slowly.

That is why this site and Tinnitus Hub as an actual non-profit organization is so important.

And it has to be pointed out that neither Steve or Markku take any profits or have any profit making "schemes" in their business plans. It is all for us. Tinnitus people.

I think I rambled on...sorry awbw.

You didn't ramble at all! This is so interesting, I was talking to someone at the ATA last week who said they know a community member who spends a good deal of her spare time visiting her local ENT offices and talking to them about tinnitus. I know it sounds like a small act, but to me, even if it touches one doctor or patient, that's something and those little interactions can spread out.

 

[awbw8]

This is a huge job awbw!! I hope your plan can work. We can try.

It is, I know I can't change the whole system overnight, but even little contributions are something! I'm planning on working on a little booklet that contains beautifully presented, hopeful, and useful information for new tinnitus patients. I'm hoping to work with all the involved stakeholder (patients, drs., orgs) to make sure it's something both helpful and informative for patients and that drs. are comfortable having in their offices.

Thank you for your support and thoughts, it means so much!

 

[Starthrower]

Trust me little changes or contributions are a bridge to something much bigger!!

We never know when preparation and opportunity may cross paths.