Repeated Modified Nerve Blocks and Auditory and Non-Auditory Nerve Stimulation

[Padraigh Griffin]

Yeah I'd go try it as soon as possible too, if I hadn't read of worsenings even with normal acupuncture (let alone something more). I have a worsening trend idiopathically and it is definitely multiple times worse than when it first started (but still mild).

I'm gonna show the study to a head director neuro-otologist at a big hospital that I'm seeing, although I doubt she will really pay attention. Nearly all ENTs, whom I have talked to, are super dismissive of any upcoming treatments and don't even care to learn about promising treatments like OTO-313, Dr. Shore's device etc. This is very disappointing really.

Unfortunately in my experience most doctors are sceptic of upcoming treatments because they know zilch about it. They dismiss it straight away as often the patient knows more about upcoming treatments than the doctors. Doctors feel uncomfortable. I can testify to this. Any ENT in Ireland would not have a small % of my knowledge of potential upcoming treatments. Why?

It's simple. I have time to read everything as I'm unable to work. They have no free time to read about potential treatments until they are right there in front of them. They are too busy seeing too many patients trying to make too much money.

That is the truth. The unfortunate truth.

 

[bill 112]

Unfortunately in my experience most doctors are sceptic of upcoming treatments because they know zilch about it. They dismiss it straight away as often the patient knows more about upcoming treatments than the doctors. Doctors feel uncomfortable. I can testify to this. Any ENT in Ireland would not have a small % of my knowledge of potential upcoming treatments. Why?

It's simple. I have time to read everything as I'm unable to work. They have no free time to read about potential treatments until they are right there in front of them. They are too busy seeing too many patients trying to make too much money.

That is the truth. The unfortunate truth.

Couldn't agree more, ENTs, neurologists, doctors, you name it, know absolutely nothing about tinnitus/hyperacusis here, only what they read briefly in a textbook, and get extremely uncomfortable when you actually begin to lecture them on the subject. Most doctors don't like the apprentice becoming the master feeling and as such disregard absolutely everything you say.

Can't tell you how many I've walked out on. Funniest was seeing the "TOP" neurologist in Clane Hospital about the pain. I put my arse on the chair and he immediately started spewing Jastrebroff shite and I literally just got up, turned around and walked out. When he asked where I was going, I told him "not back to 1985 with you" and stayed going lol.

Best you get here at the moment is a decent audiologist, some are quite up to date on tinnitus and hyperacusis but all seem to be sales reps for Lenire at this point.

 

[Padraigh Griffin]

Couldn't agree more, ENTs, neurologists, doctors, you name it, know absolutely nothing about tinnitus/hyperacusis here, only what they read briefly in a textbook, and get extremely uncomfortable when you actually begin to lecture them on the subject. Most doctors don't like the apprentice becoming the master feeling and as such disregard absolutely everything you say.

Can't tell you how many I've walked out on. Funniest was seeing the "TOP" neurologist in Clane Hospital about the pain. I put my arse on the chair and he immediately started spewing Jastrebroff shite and I literally just got up, turned around and walked out. When he asked where I was going, I told him "not back to 1985 with you" and stayed going lol.

Best you get here at the moment is a decent audiologist, some are quite up to date on tinnitus and hyperacusis but all seem to be sales reps for Lenire at this point.

I know buddy. We here in Ireland are so behind with tinnitus. My audiologist was trained in the NHS and runs tinnitus support clinics for The Cork Deaf Association. She is frustrated by lack of ENT knowledge here and is not a fan of the Jastreboff shite. There are only 58 ENTs in Ireland and 57 of them know absolutely nothing at all about tinnitus. These ENTs are way too busy apparently, but yet have time for busy private clinics in addition to their public pay cheque.

I have no faith in Lenire for severe sufferers but I have decided to see Dr. Brendan Conlon for the sole reason he is the only ENT in the country that has 'tried' to treat tinnitus. He might be open to new treatments or prescribing possible forthcoming drugs off label. The second XEN-1101 is out, I'm on that train. I'm due to see him in May. We will see how that goes.

 

[koffee_monster]

Quite amazing results. What are your thoughts?

Integrative Treatment for Tinnitus Combining Repeated Facial and Auriculotemporal Nerve Blocks With Stimulation of Auditory and Non-auditory Nerves

I have quickly skimmed over the paper, I'm planning to try and analyse it properly and visualize the data for a better overview somewhere later next week. Currently, I'm still reading (and crying over) the European Tinnitus Treatment Guideline paper.

What immediately put me off from this Korean paper is the column "Previous Tx History" in table 2. Almost all participants are on dietary supplements and most are on medication. In the worst-case scenario, this is an indication of extreme (self-)selection bias. In the best-case scenario, this directly affects the credibility of the results. There is no "good" outcome here.

Also, this part of the discussion:

However, in several patients, failure to repeat the procedures triggered tinnitus recurrence a few hours or a few days later. Thus, for treating subacute and chronic intractable tinnitus, 10–15 procedures were needed to achieve long-term satisfactory tinnitus relief.

Followed by this statement:

5. Have you followed up further with the patients in the trial to see if their tinnitus has changed after 1 year?

As we mentioned in our paper. The follow-up period is relatively short. So, we did not checked all of them. However, some patients continued to visit our clinics for other problems, and they are consistently maintain their tinnitus improvement without change.

Gives me the feeling their "long-term satisfactory tinnitus relief" that is observed is also subject to self-selection bias as those are the clients that returned. How can they promote long-lasting results if not everyone is checked, the follow-up period is short and they base their results exclusively on the people who return to their clinic?

I sent a copy of this paper to a medical coordinator at the University Hospital in Ghent (UZ Gent).

I do not expect them to analyze the paper, but maybe it piques their interest and gets some attention.

As @Padraigh Griffin said, the faster this gets either confirmed or debunked, the better.

 

[Uklawyer]

What immediately put me off from this Korean paper is the column "Previous Tx History" in table 2. Almost all participants are on dietary supplements and most are on medication. In the worst-case scenario, this is an indication of extreme (self-)selection bias. In the best-case scenario, this directly affects the credibility of the results. There is no "good" outcome here.

Hi @koffee_monster. Could you explain this selection bias a little more in terms of the results please? How would being on medication or supplements affect the results of the study?

 

[koffee_monster]

Hi @koffee_monster. Could you explain this selection bias a little more in terms of the results please? How would being on medication or supplements affect the results of the study?

In medical trials or research articles, it is always important to be able to isolate the treatment proposed from external factors. Some of the major factors that can undermine the results of research or trials are (in no particular order):

1. Concurrent treatments in subjects during the trial or research phase.
2. An unrealistic expectation in subjects (this can be either positive or negative. Subjects that are convinced the treatment will not work often underestimate or underrate the improvements they experience. Subjects that are convinced the treatment will work will exaggerate improvements. Often this is not on purpose but simply a subconscious process).
3. A share in the company or conflict of interest that directly relates to the results of the study, trial or publication. This can be either financial loss or gain, an increase or decrease in personal or company reputation or a personal relationship with practitioners or patients.

The first rule is violated for most of the patients: dietary supplements and medication usage make it difficult to assign improvements to the treatment directly. The treatment could still be part of the reason for the improvement but it cannot be isolated and may be ineffective if not applied in combination with other factors.

The use of dietary supplements may also indicate that some patients are susceptible to an increased or exaggerated response to treatments or symptoms. Past studies have pointed to a (subconscious) bias in people who claim major improvement from supplements [1] that are seemingly unrelated to the illness or even objectively ineffective (e.g.: a sugar or starch pill). If this clinic is oriented to a more "alternative treatment" audience it may attract people who are easily influenced, thus partially violating the second rule.

The cultural relationship between a practitioner and patient in Korea, and the fact that clients had to pay for their treatment during this research also may affect the third rule. (I am unfamiliar with the culture of Korea, but it is a factor that should be considered nonetheless).

None of these discrepancies can be proven and it could very well be that everything I summed up does not apply to this specific study, but unless there is an objective clinical trial, it cannot be known for certain.

In medical development, there is no benefit of the doubt.

The problem with inconclusiveness in treatment papers or research papers is that it prompts further research and possibly poses a danger to future patients. This prolongs the time required to standardize the treatment and may halt the incorporation of the treatment in standard care completely.

A proper, controlled and double-blinded study is in order here to remove inconclusiveness. Currently, there is quite a bit of room for "ifs" and "buts". Both of which western medicine does not tolerate.

-- Notes
[1]: Some supplements may help and could be somewhat effective in treating tinnitus, but the type of supplement is not specified in the Korean paper.

 

[Christiaan]

Not much is known what kind of effects Lidocaine has on the brain, but I've found something interesting in a research paper that might shed some light on the mechanism of this anesthetic in regards to tinnitus:

More info:

B. I. Han, H. W Lee, T. Y. Kim, and al. Tinnitus: characteristics, causes, mechanisms, and treatments.

Journal of Clinical Neurology, 5:11–19, February 2009.

S. K. Swain, S. Nayak, J. R. Ravan, and al. Tinnitus and its current treatment- still an enigma in medicine.

Journal of the Formosan Medical Association, 102:1–19, November 2015.

 

[Uklawyer]

The first rule is violated for most of the patients: dietary supplements and medication usage make it difficult to assign improvements to the treatment directly

Thanks. What if the patient has been taking medication for a long period of time (for an unrelated or pre-existing condition) without any discernible effect on the tinnitus?

 

[koffee_monster]

Thanks. What if the patient has been taking medication for a long period of time (for an unrelated or pre-existing condition) without any discernible effect on the tinnitus?

This depends on the type of drug. Systemic drugs (drugs that involve mechanisms present in the entire body) are often avoided in studies.

For most other drugs it depends on either known chemical incompatibility or referring to previous studies.

If a person in the active trial group has anomalous symptoms or results and also happens to be taking a specific drug, this is often treated as an isolated case and reported in the results as such. If the group size is large enough, a few isolated cases should not significantly impact the result.

This is also why most Phase I trials rely on healthy participants. The main goal is not to have external factors interfere with the results. The only major exception to this rule is cancer treatment trials.

 

[Chinmoku]

A balanced view here is fundamental.

Pros:

1. A published study peer reviewed by 2 UK researchers.

2. No obvious business agenda, no obvious incentives to write a paper in English for a private clinic in Korea. Even willing to train doctors abroad. Here their answer to @GoneAway matches what I had stated earlier in the thread. Journals do have "aristocracy" and publishing papers is tough for outsiders. I can almost see their paper being rejected many times before landing in Frontiers.

3. They only took difficult cases with VAS> 5.

4. Their treatment is original.

5. They exposed themselves reputationally to the world. This is a successful pain clinic in Korea whose business is already going well.

Cons:

1. Even if original, the mechanism of action of the method seems a bit far fetched. Why should static needle positioning alternated with nerve blocks cure tinnitus from such diverse etiologies?

2. Inconsistent statements. The paper claims 87% success and 7/10 points mean reduction, but in correspondence and even in the paper they say chronic tinnitus, bad hearing loss, ototoxic drugs etc are a poor prognosis. Do they only treat well some types of tinnitus more related to musculoskeletal issues? This is related to the next point.

3. Self-selection bias from patients. Tinnitus of patients approaching a pain clinic may not be the typical tinnitus (that would lead to ENTs). So maybe they treat successfully tinnitus related to pain conditions and this explains their great success. This is my main fear.

4. UK specialists I consulted and who responded to me have all suggested big caution in having big expectations here.

So in summary, if one is not desperate one might wait for the first reports of western clients. If one is desperate, the trip, the logistics, the long stay in Seoul etc are a big investment, but there is enough promise to be worth a shot I think.

Quoting my own post as I have some new information that tilts the scale of pros/cons slightly in the cons direction.

I asked help from a Korean contact of mine who wishes to stay anonymous. They checked a Korean tinnitus forum and found the following:

I've signed up to [this Korean tinnitus forum] to check what people say about this clinic. Apparently. the doctor ran a series of free trials with people from the forum (all with tinnitus), so there were some comments about it. In short, there were online posts by 4 people during 2000s [around 2007 mostly] but none of them said it worked. Half of them said it improved marginally for a while before returning to the original state, and the others said it didn't work.

This would be consistent with the usually temporary relief of Lidocaine for some patients. On top of that, my contact said there was a topic from 2015 on this clinic, on the Korean tinnitus forum, but with very few posts and very few replies, as if there were no interest.

They sent me screenshots in Korean (which I can't read) but I can't disclose those because they would identify my contact.

Now, and this is important, I don't want to discourage anyone here, this might be the opposite bias, usually mostly people for whom things don't work keep on posting on health forums, the others move on. So 3-4 users with negative or lukewarm experiences around 2007 and lack of response to a 2015 thread don't prove much. It is absolutely still worth speaking with the clinic perhaps to clarify better for which patients the treatment worked so spectacularly. This is just a piece of information I wanted to add. There is a concrete possibility the retrospective study focused mostly on patients who responded well, though, so there could be indeed some bias as most of us mentioned from the start. The most realistic outcome is that it works but not as much as the study suggests, and it works only on some subtypes of tinnitus.

I will see if I can find out more, but the Korean tinnitus forum my contact visited is surprisingly quiet about this, given all the discussion we have here and the number of hits the paper got. Perhaps this is because the paper is in English. Also, the Korean tinnitus forum requires registration so it's not open to searches, even if one understood Korean.

Please don't bombard me with requests for my contact, they are very busy and already did quite some work to help us, I don't think they can do much more.

 

[Uklawyer]

This depends on the type of drug. Systemic drugs (drugs that involve mechanisms present in the entire body) are often avoided in studies.

For most other drugs it depends on either known chemical incompatibility or referring to previous studies.

If a person in the active trial group has anomalous symptoms or results and also happens to be taking a specific drug, this is often treated as an isolated case and reported in the results as such. If the group size is large enough, a few isolated cases should not significantly impact the result.

This is also why most Phase I trials rely on healthy participants. The main goal is not to have external factors interfere with the results. The only major exception to this rule is cancer treatment trials.

@koffee_monster, does it not state that the patients had previously tried medication to help with tinnitus (not that they were currently taking medication)? One of the inclusion criteria was "absence of substantial benefits or patient satisfaction after medication and other treatments".

I asked help from a Korean contact of mine who wishes to stay anonymous. They checked a Korean tinnitus forum and found the following:

I've signed up to [this Korean tinnitus forum] to check what people say about this clinic. Apparently. the doctor ran a series of free trials with people from the forum (all with tinnitus), so there were some comments about it. In short, there were online posts by 4 people during 2000s [around 2007 mostly] but none of them said it worked. Half of them said it improved marginally for a while before returning to the original state, and the others said it didn't work.

This would be consistent with the usually temporary relief of Lidocaine for some patients. On top of that, my contact said there was a topic from 2015 on this clinic, on the Korean tinnitus forum, but with very few posts and very few replies, as if there were no interest.

They sent me screenshots in Korean (which I can't read) but I can't disclose those because they would identify my contact.

Now, and this is important, I don't want to discourage anyone here, this might be the opposite bias, usually mostly people for whom things don't work keep on posting on health forums, the others move on. So 3-4 users with negative or lukewarm experiences around 2007 and lack of response to a 2015 thread don't prove much. It is absolutely still worth speaking with the clinic perhaps to clarify better for which patients the treatment worked so spectacularly. This is just a piece of information I wanted to add. There is a concrete possibility the retrospective study focused mostly on patients who responded well, though, so there could be indeed some bias as most of us mentioned from the start. The most realistic outcome is that it works but not as much as the study suggests, and it works only on some subtypes of tinnitus.

I will see if I can find out more, but the Korean tinnitus forum my contact visited is surprisingly quiet about this, given all the discussion we have here and the number of hits the paper got. Perhaps this is because the paper is in English. Also, the Korean tinnitus forum requires registration so it's not open to searches, even if one understood Korean.

Please don't bombard me with requests for my contact, they are very busy and already did quite some work to help us, I don't think they can do much more.

Thanks for the effort @Chinmoku. This is all so aggravating. Why didn't these people who got great results tell others about it?! Why has the forum not received more attention and follow-up in the years since the 2000s?

I wonder what is special about the needle used and whether we can't just get someone in the West to do it. I am going to write to an ENT that a family member saw and see what he thinks. Someone in the UK must be okay to try this out and be able to administer it correctly.

EDIT: I have written to the ENT.

 

[Chinmoku]

Someone in the UK must be okay to try this out and be able to administer it correctly.

I tried, believe me. Some didn't respond, others mentioned ethical committees, others the need for a multi-centre trial. Not a single one mentioned they would do it, although one said he could do it technically but would not do it without the above process. Not even if I signed a paper taking all responsibility they would do it. It's so frustrating. But if you have an ENT (but he must be a surgeon) in the family, perhaps that can help.

EDIT: As I said, it is not a typical treatment for ENTs, more for facial surgeons and pain surgeons but these send you back to an ENT as soon as they hear "tinnitus". That's the other problem.

 

[DocTors_94]

I tried, believe me. Some didn't respond, others mentioned ethical committees, others the need for a multi-centre trial. Not a single one mentioned they would do it, although one said he could do it technically but would not do it without the above process. Not even if I signed a paper taking all responsibility they would do it. It's so frustrating. But if you have an ENT (but he must be a surgeon) in the family, perhaps that can help.

EDIT: As I said, it is not a typical treatment for ENTs, more for facial surgeons and pain surgeons but these send you back to an ENT as soon as they hear "tinnitus". That's the other problem.

This is what also breaks me down. The medical community doesn't want to do anything experimental for the severe cases, since it might be "unethical". I got a response from a researcher; he told me that having a DBS (Deep Brain Stimulation) surgery for tinnitus would be profiting from my desperation. I was like NO, you would be saving my life, literally. Another researcher told me nay nay because I am not a citizen of the Netherlands. Bureaucracy, ethics? When the suffering is so immense, where this is maybe your ticket to live again, does the rest really matter? Does it matter where I am from? This is about being empathetic... I still can't believe this.

 

[GeorgeLG]

I can't speak for other countries but here in the United States, everything is influenced by trying to avoid lawsuits. My wife and I have been through 6 cancers and you would not believe the crap we went through while doctors were trying to not get sued, especially as she was dying in the ICU. I'm not saying all doctors are bad or don't care about patients but our country has become so litigious that they have to do this for professional survival.

Then of course there are the insurance challenges, especially for new experimental drugs/treatments. The newest drugs for cancer are immunotherapy drugs like checkpoint inhibitors which cost over $100K per year and insurance often will not cover them. I think that this is part of why you are frustrated on tinnitus treatments. That and these guys are busy with their "day jobs". Trying to get enough bread and butter traffic through the doors to cover their malpractice insurance premiums.

George

 

[2noist]

This is what also breaks me down. The medical community doesn't want to do anything experimental for the severe cases, since it might be "unethical". I got a response from a researcher; he told me that having a DBS (Deep Brain Stimulation) surgery for tinnitus would be profiting from my desperation. I was like NO, you would be saving my life, literally. Another researcher told me nay nay because I am not a citizen of the Netherlands. Bureaucracy, ethics? When the suffering is so immense, where this is maybe your ticket to live again, does the rest really matter? Does it matter where I am from? This is about being empathetic... I still can't believe this.

It's not so simple. Doctors have medical licenses that they can lose or be restricted. Doctors can't just perform an experimental operation or procedure that hasn't been investigated and cleared for use in their country. A South Korean study won't cut it. What if something goes wrong? In western countries it's not enough that you sign a paper releasing responsibility. A clinical trial is a different matter. The researcher who said you need to be a Dutch citizen, it also makes sense. Often clinical trials are restricted that way.

Think about it... nowadays many doctors are afraid of prescribing benzodiazepines and opioid painkillers. Many people who need those drugs can't get them because doctors are afraid of the governmental medical agencies. Just because some people abuse them.

I think most doctors want to help but their hands are tied. If you want to change that, you need to start from the government level. Not easy...

 

[Uklawyer]

A clinical trial is a different matter

So call it a clinical trial. These are nerve blocks. They are already used in the relevant areas to block nerve signals. The only difference is nerve pain v. sound.

 

[2noist]

So call it a clinical trial. These are nerve blocks. They are already used in the relevant areas to block nerve signals. The only difference is nerve pain v. sound.

And who organizes and pays for the clinical trial? It's not as simple as "calling it a clinical trial", you know...

It's clear from all the messages people have sent to doctors here and nobody getting anywhere, it's going to be very difficult to get anyone interested enough to do this in EU/US.

@Chinmoku's friend's investigation in the South Korean tinnitus forum also makes me and probably many more here less enthusiastic about this...

 

[Padraigh Griffin]

I can't speak for other countries but here in the United States, everything is influenced by trying to avoid lawsuits. My wife and I have been through 6 cancers and you would not believe the crap we went through while doctors were trying to not get sued, especially as she was dying in the ICU. I'm not saying all doctors are bad or don't care about patients but our country has become so litigious that they have to do this for professional survival.

Then of course there are the insurance challenges, especially for new experimental drugs/treatments. The newest drugs for cancer are immunotherapy drugs like checkpoint inhibitors which cost over $100K per year and insurance often will not cover them. I think that this is part of why you are frustrated on tinnitus treatments. That and these guys are busy with their "day jobs". Trying to get enough bread and butter traffic through the doors to cover their malpractice insurance premiums.

Great point. My wife is a litigation solicitor/lawyer and has seen it all.

Amazing story that you have survived so many cancers. I sincerely hope the future is cancer free and wish you and your wife the best of health.

 

[GeorgeLG]

Great point. My wife is a litigation solicitor/lawyer and has seen it all.

Amazing story that you have survived so many cancers. I sincerely hope the future is cancer free and wish you and your wife the best of health.

Thank you for your kind words. Sadly my wife passed away from cancer number 4, 2.5 years ago. I am still trying to stay one step ahead of my two cancers. All we can do is move the ball forward from where we are today. Get the best out of every day and have passion for what we want.

George

 

[Padraigh Griffin]

Thank you for your kind words. Sadly my wife passed away from cancer number 4, 2.5 years ago. I am still trying to stay one step ahead of my two cancers. All we can do is move the ball forward from where we are today. Get the best out of every day and have passion for what we want.

Genuinely sorry to hear about your wife's passing. Cancer is a brute. My mother died of pancreatic cancer but amazingly my uncle same side survived 20 years after a similar pancreatic cancer diagnosis (should be a record I think). Hopefully your story will be like his.

 

[Uklawyer]

@UKlawyer, what about the Lidocaine? I had to use a small amount recently (topically) and it spiked me. Should that be a concern for us? Does Lidocaine have to be used for this?

@Jerad, I have asked the question about an alternative to Lidocaine. I will post when I have received an answer.

 

[Uklawyer]

Response of the ENT I emailed about the study:

This is interesting and clearly experimental. I am definitely not doing such treatments and I am not aware of anyone else in the UK doing such treatments. I note the paper did not report any side effects of these injections. It may be worth you contacting the "Tinnitus Clinic " in London to see if they can advise you further.

......

 

[Chinmoku]

Response of the ENT I emailed about the study:

This is interesting and clearly experimental. I am definitely not doing such treatments and I am not aware of anyone else in the UK doing such treatments. I note the paper did not report any side effects of these injections. It may be worth you contacting the "Tinnitus Clinic " in London to see if they can advise you further.

......

Thanks for this. As expected, unfortunately.

Re: the Tinnitus Clinic, that's a glorified audiology shop, they mostly offer acoustic neuromodulation that might work for some people whose tinnitus is at a single well defined frequency, CBT/Habituation therapy and advice, hearing aids, and now Lenire. I think they have a resident audiologist and resident ENT but these guys certainly don't do any nerve blocks, so for them it would be a major hassle in recruiting the right type of surgeon, but they would have to trial the therapy anyway and go through the loops of ethical approval etc. If they ever see the business angle in this they might try, but I'm not sure how long it would take.

Finally, one more thought. The authors claim their procedure is very safe and no one worsened, not a single patient in 20 years. Having heard terrible stories about acupuncture, I wonder. This is not acupuncture, granted, but it's much more invasive although the needles are positioned using fluoroscopy, so they are quite precise, but is it possible that not a single patient was worsened? Also, wasn't Lidocaine ototoxic?

We need to clarify as much as possible before booking a flight and AirBnB in Seoul.

EDIT: @Uklawyer, our best shot is finding some facial / pain / maxillofacial surgeon who is already doing something very close to this in their treatment of other conditions, so that they could slightly modify an existing protocol to fit this Korean one. This might avoid all the hassle with ethical approval etc, as it would be seen as an existing treatment, although not for tinnitus. But I'm not sure such a surgeon exists. My attempts to locate one failed.

 

[Joeseph Stope]

We need to get this research out to as many specialists as we can. I myself have made a contact with a pain management doctor who works with my mother (anesthesiologist at a hospital) and she does medical acupuncture and nerve blocks for pain.

She told me that she has no previous experience with tinnitus, but she will study the Korean technique and she will inform me.

Personally I'm not going to go in for the treatment (given someone learns it and can do it in my area), since I have a mild case. But it's always good to know that there might be a safety net, if things get ugly.

Respectfully, I'd pose the question to you:

"Is this the best use of resources (i.e. time, money, the goodwill and patience of the tinnitus experts who are busy enough as it is"?

IMHO what we need here is clarity. We need a team to either see the treatment in operation (along with a control sample) or said team to try and replicate the treatment in the west... or preferably both.

One of the wisest messages I got from the late Derek Schoefield, the head of our tinnitus group in Howth, was that you can't have patients running around like headless chickens in the pursuit of some alleged cure... which in the end turns out to be all in vain -- a waste of time, money, energy and the emotional investment that comes from getting your hopes high and then (once again) dashed.

Mind you, I hope that this is a new avenue of treatment or cure just like the next man.

 

[Uklawyer]

but is it possible that not a single patient was worsened? Also, wasn't Lidocaine ototoxic?

I think it's possible that no patient has worsened as a result of this treatment - imagine how many people have tried acupuncture (for any ailment) without any adverse effect. I think someone mentioned ototoxicity with Lidocaine, but I don't believe there is much on it being ototoxic. In any event, I have asked about a substitute for Lidocaine for @Jerad, along with one or two other questions. I will report once I have heard back.

You appear to suffer much more than me, @Chinmoku, but I am seriously bored of this now. I want to work and I want to not feel sh*te every day when I wake up. I would like to see Susan Shore's results, but my patience is wearing really thin.

 

[Chinmoku]

I think it's possible that no patient has worsened as a result of this treatment - imagine how many people have tried acupuncture (for any ailment) without any adverse effect.

Actually here quite a few people have worsened due to electric acupuncture, but not normal one possibly. In fact the Korean authors do say that electric stimulation is not safe, so they limit themselves to needle placement. Maybe no one worsened, I really hope that's true, but I fear the selection (or even self-selection) bias.

I think someone mentioned ototoxicity with Lidocaine, but I don't believe there is much on it being ototoxic. In any event, I have asked about a substitute for Lidocaine for @Jerad, along with one or two other questions. I will report once I have heard back.

Thank you for looking into it. In this quite cited review, Cianfrone et al (2011) classify Lidocaine as Ototoxic (classification 1).

You appear to suffer much more than me, @Chinmoku, but I am seriously bored of this now. I want to work and I want to not feel sh*te every day when I wake up. I would like to see Susan Shore's results, but my patience is wearing really thin.

I understand completely @Uklawyer, we don't have much coming up short term and even short term is too far away, we have to wait hopefully just one-two month for some preliminary results from Shore and then the full un-blinding and the actual results. My problem is survival, at this level of pain I don't know how much longer I can take it, every day I'm amazed and can't believe I made it this far, this horror is impossible. Susan Shore's device is taking forever to come out, she could have maybe saved lives if she had gone a little bit faster, she is being fully rigorous, which is good, we had enough chancers attacking this problem as is, but good heaven is she taking forever. The preliminary results in reduction of tinnitus I saw somewhere are not comparable to those declared on the Korean study (7 points out of 10 on average) but her results will be much more certain, and my hope is that with repeated treatment her bimodal neuromodulation will keep improving the symptoms. She is not Lenire, she has worked on this for a very long time and is doing a proper clinical trial, which we have missed both in Lenire and in the Korean study. The problem is staying around until then. My kids are growing up, I lost my marriage and even if I survive this hell long enough for one of these treatments to finally give relief, and I don't really know if I can, this will impact their infancy. It has already basically ruined my life. I'm tortured and fed up.

Begin {rant}

Spoiler: Rant

I'm fed up with this condition and all the guessing, with nothing working even minimally, I'm fed up with the continued unexplained worsening, I'm fed up with those medical doctors who don't care and send you to mental health automatically, I'm fed up of all the bureaucracy in medicine, drug approval and experimentation, I'm fed up with tinnitus at levels 1 and 10 being called just "tinnitus" and being considered the same condition, I'm fed up with western medicine and all the pseudoscience behind it, and the excessive specialization and specialists not talking to each other, I'm fed up with COVID-19 having taken all the resources and delayed everything else for years, I'm fed up with everything basically.

End {rant}

Let's try to stick around for Susan Shore at least, I'll try to make it until I can trial the treatment. Lenire didn't work for me and many others but I hope the more rigorous work of Michigan will pay off. If only Lim had not left the promising Minnesota project for Lenire, we could have two options instead of one now. Damn.

 

[UKBloke]

I'm fed up with those medical doctors who don't care and send you to mental health automatically

This study regarding the discovery of an electrophysiologic marker for constant tinnitus popped up a couple of days ago. It's actually a study by Christopher Cederroth, the guy who gave an interview for the latest Tinnitus Talk podcast and makes for quite an interesting read.

I remember Dr Cederroth discussing various technical aspects of his paper during the interview here. But it was actually his advocacy for patient wellbeing that left me holding him in very high regard. And this has only been reinforced by statements in his recent study like; "Patients are looking for evidence of their condition, both for their own peace of mind and to reduce the dismissive attitudes of some health care practitioners, who may attribute all their suffering to "stress"".

Although the study needs validating, if it comes to fruition, we'll have taken a hugely important step towards finding at least some more effective management options I think, because with an objective marker for constant tinnitus there'll be no more device manufacturers/researchers shirking responsibility for proper placebo control for example, or/and hiding behind the kind of flawed THI self-reporting that's plagued this field of medicine for so long.

Another reason for posting the study here is that it mentions the use of Lidocaine, albeit for that drug's ability to temporarily reduce tinnitus whilst they observe the Wave V readout during testing. Intriguing stuff.

 

[Uklawyer]

Thank you for looking into it. In this quite cited review, Cianfrone et al (2011) classify Lidocaine as Ototoxic (classification 1).

Dexamethasone is also there. I think most drugs seem to/may cause tinnitus (whether temporary or otherwise).

It is torturous, in so many ways. But your life is not ruined. If something were to work sometime soon, you could turn things around massively in a very short space of time.

We are fed up now but we may not be soon.

Also, bias or not, and absent fraud, something must be happening when you see 6/10 or 8/10 tinnitus going down to 0.

 

[Uklawyer]

A few more questions with answers from the clinic. Doctor Heon Man Sirh seems pretty genuine to me.

1. The patients in the study seemed to have rated their tinnitus from 6 to 10 on the VAS. Have you treated people with milder tinnitus (VAS 1-5) and can you confirm that the results are the same for these people?

We also tried T-VAS range 3 to 5. But, below 3? Not sure.

As I explained in our paper, the cost of this treatment is not a small amount even with insurance. In addition, patients prefer non-invasive treatment methods such as medications, nutritional supplements, and massage.

Actually a T-VAS of less than 3 adapts well to tinnitus. In that range quality of life is a little bad. But anyone who wants treatment can do it. I don't apply the method because of cost effectiveness, not because I'm not sure about its effectiveness.

2. Can you use a different nerve block (not Lidocaine) for the treatment?

I think you might be wondering if we can use other injectables for the nerve block. We sometimes use placenta derivatives mix with Lidocaine. It's more effective rather than just Lidocaine only by my experience. But some patients have allergic reaction with that. Not severe just itching, rash, redness.

3. Can a doctor in another country perform this treatment or would they need you to teach them the method? Would they need to purchase the needles from you? Would they have to pay you a fee for performing the treatment?

Of course we have to teach them for treating properly. They need to import from a Korean company that made the needle. And they don't need to pay to me for performing this treatment.

4. Do you have any further news on the treatment? On recent success?

I have had two overseas (from USA) patients after publishing the paper. They perform 4 sessions at now. And all two have had excellent results.

5. Did the patients with idiopathic treatment have somatic tinnitus (TMJ problems, neck pain)? Does the treatment work well with somatic tinnitus?

In case of somatic tinnitus its outcome is really good. If patient has symptoms related with head & neck such as sounds change when they rotate their neck or chew something, it means they have some part of somatic tinnitus. And actually lots of tinnitus are not pure sensorineural tinnitus.

6. What do you think of Susan Shore's University of Michigan trial with bimodal neurostimulation and the belief that tinnitus is generated in the Dorsal Cochlear Nucleus?

I already mentioned bimodal neurostimulation in our paper. And also I think the paper contains my opinion. I agree with access using multi-sensory (sound for cochlear nucleus, somatosensory). She studied this field a long time based on science.

Thank you,
Heon Man Sirh.

 

[AfroSnowman]

OK, one of us really has to borrow from our relatives and go do this and find out if this is for real.