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

[Chinmoku]

Did you try our ENT professor that we have both seen?

I wrote to him today, Uklawyer. If you write in the same period, perhaps within next week, we can obtain some critical mass?

Another specialist we could contact is the current president of the neuro-otology society.

I'm going to write this evening or tomorrow to the directors of a couple of private pain clinics in London. I need to find the right ones first. I will try to list the clinics I contacted.

 

[Uklawyer]

I wrote to him today, Uklawyer. If you write in the same period, perhaps within next week, we can obtain some critical mass?

Okay. I think the address is that of his secretary's, is it not? Do you think that it would be helpful if you showed us the content of your correspondence to him?

 

[Padraigh Griffin]

Another specialist we could contact is the current president of the neuro-otology society.

I contacted the Professor of Neurotology at Cambridge who performed my surgery. Have to go through secretary. No comment received back yet unfortunately.

 

[Chinmoku]

I contacted the Professor of Neurotology at Cambridge who performed my surgery. Have to go through secretary. No comment received back yet unfortunately.

I can write to him too if you like. I'm sending a message to many medical professionals in the UK and they are personal messages that are quite different depending on the person, I'm not spamming. I also check the list of articles and CVs of the specialists to make the letters more personal. In this sense, @Uklawyer, it's difficult for me to share a prototype letter but let me see what I can do.

 

[GoneAway]

Update:

Glad my friend speaks Korean, lol.

• 15 sessions for optimal results.
• As few as 5 sessions if you are young, healthy, no underlying conditions (diabetes, severe hearing loss, heavy drinker...)
• 20 % completely cured, 60% extreme reduction, 20% ineffective due to the conditions above.
  
• Sounds like a 2-month minimum trip. 7-day quarantine getting there, 3 sessions a week, taper down in the next weeks.
• $250-$300/session without insurance. Not sure how that works if you have insurance here. Probably out of pocket.
• They said if I get a plane ticket, to call them and they will reserve a spot.

Hope that helps.

 

[Ela Stefan]

Update:

Glad my friend speaks Korean, lol.

• 15 sessions for optimal results.
• As few as 5 sessions if you are young, healthy, no underlying conditions (diabetes, severe hearing loss, heavy drinker...)
• 20 % completely cured, 60% extreme reduction, 20% ineffective due to the conditions above.
  
• Sounds like a 2-month minimum trip. 7-day quarantine getting there, 3 sessions a week, taper down in the next weeks.
• $250-$300/session without insurance. Not sure how that works if you have insurance here. Probably out of pocket.
• They said if I get a plane ticket, to call them and they will reserve a spot.

Hope that helps.

What about the lasting results, please? What did they say? Tinnitus will remain low or disappear for how long time after the treatment? Also, do you have to repeat the treatment process again if your tinnitus goes back to loud again? I mean, can repeat treatment process give the same results?

I don't understand much about how nerve ganglions work. Thank you!

I think that's the absolute cheapest scenario. I highly doubt 6 sessions would do much (if we assume the treatment is not snake oil), more likely 10 and upwards. Also, I believe there is 7-day or something quarantine time upon arrival, so yeah... Possibly around $10,000.

You can find an AirBnb in Seoul for as little as 400 dollars a month. So it depends where you stay. Usually Asian people, or most of them, live in a flat as little as 15 square feet. But you can find everything you need there. And if you need 2 months of treatment, that can save money. I know what I say because I have been living in Asia for a while.

I'm sending a message to many medical professionals in the UK and they are personal messages that are quite different depending on the person, I'm not spamming. I also check the list of articles and CVs of the specialists to make the letters more personal.

@Chinmoku, I know about your struggle with Clonazepam (Klonopin, Rivotril).

Did you manage to get off of it? Did you ask in any of those letters that you have sent to the specialists over there in England if taking benzos or just coming off of them would intervene with the results of this treatment?

Thank you so much!

 

[Chinmoku]

@Chinmoku, I know about your struggle with Clonazepam (Klonopin, Rivotril).

Did you manage to get off of it? Did you ask in any of those letters that you have sent to the specialists over there in England if taking benzos or just coming off of them would intervene with the results of this treatment?

Thank you so much!

No, or rather I managed to come off it after a long taper but after one week the tinnitus was impossible (it had been steadily worsening during the taper too) and I reinstated to stay alive but not at a high dose. However, even at this constant dose I keep worsening daily. No doctor knows if this is benzo tolerance or not but I have also progressive hearing loss, which Clonazepam should not trigger, so I am not sure it's the Clonazepam. Perhaps it's a factor but not the whole story.

As for possible interference with this therapy, I don't really know. UK specialists always told me none of their patients had problems with benzos, and yet here it is so common to hear horror stories. There is a disconnect between medical professionals and patients who struggle with benzos. My hope would be to get relief from a therapy like this, or perhaps from Shore's device, so that the tinnitus abates and I can come off benzos and stay off completely. But so far I haven't found anything that helps stop the worsening and reverse the trend. I tried one million things, nothing helped.

 

[FlatDarkEarth]

Everything about this screams too good to be true...

 

[GoneAway]

What about the lasting results, please? What did they say? Tinnitus will remain low or disappear for how long time after the treatment? Also, do you have to repeat the treatment process again if your tinnitus goes back to loud again? I mean, can repeat treatment process give the same results?

You can find an AirBnb in Seoul for as little as 400 dollars a month. So it depends where you stay. Usually Asian people, or most of them, live in a flat as little as 15 square feet. But you can find everything you need there. And if you need 2 months of treatment, that can save money. I know what I say because I have been living in Asia for a while.

You probably mean 150 sq feet, but yea, there's a lot of cheap monthly AirBnbs.

The report says effective for at least a year, which is what they measured up to I assume. I would think it would work the same as before if you had good results the first time.

Everything about this screams too good to be true...

No one knows until someone flies out there and gets it done. I'll consider it if I can't get out of this 1-2 day low hiss tinnitus, 1-2 day screeching reactive tinnitus in the next couple of months. Hopefully this just subsides with time.

 

[Gb3]

UK specialists always told me none of their patients had problems with benzos, and yet here it is so common to hear horror stories. There is a disconnect between medical professionals and patients who struggle with benzos.

@Chinmoku, it's common to hear horror stories about benzos if you go searching for them on a site like BenzoBuddies.

 

[Karl28]

They have been using this technique for 20 years!!!

20 years, wtf?

Why are we only hearing about this now?

 

[Kriszti]

@GoneAway, thank you for reaching out to the clinic via phone.

Could your Korean friend check Korean social media sites, tinnitus support groups, maybe articles about how truthful is the claim that they have been treating patients with this method for 20 years with similar success rate? Language barrier is huge for us, but if they do have a successful practice, that should have caused a buzz in the Korean‐speaking tinnitus community.

 

[EDDTEKK]

I doubt that this therapy is effective. Why did they never present their results at the annual Tinnitus Research Initiative meeting!

 

[Ela Stefan]

Could your Korean friend check Korean social media sites, tinnitus support groups, maybe articles about how truthful is the claim that they have been treating patients with this method for 20 years with similar success rate? Language barrier is huge for us, but if they do have a successful practice, that should have caused a buzz in the Korean‐speaking tinnitus community.

That would be very good.

Word from my Korean-American contact, who still waits for feedback on this matter from locals over there: Koreans can see things like health problems or money problems as a sign of weakness. They tend to keep things like that private. The younger generations are changing that behavior, but it is ingrained into the society. Even if a Korean person needs help, they rarely ever ask. They try to handle it on their own. I tried finding Korean tinnitus groups; no luck on my end.

 

[GeorgeLG]

20 years, wtf?

Why are we only hearing about this now?

Good question. If true, then they have some indication how durable this treatment is beyond one year.

I appreciate both the hope and the many cautionary viewpoints on this. It is interesting that this focuses on the nervation of the neck and jaw area. My own journey has led me to the upper cervical and jaw area including the trigeminal and vagus nerves, TMJ, etc. This does not support the validity of this treatment but certainly resonates with me as working in the area that for many may be the source of or solution to the problem.

George

 

[Uklawyer]

Koreans can see things like health problems or money problems as a sign of weakness.

Call me weak then.

 

[GeorgeLG]

Call me weak then.

You get to decide what kind of a person you are, nobody else. Other people's opinion of us are none of our business. Nobody else fully understand your pain and struggle. By definition nobody can hear or feel what we hear or feel and suffering is suffering

George.

 

[hopes]

Red flags everywhere.

 

[reggie green]

This is another hope drug folks.

 

[Ela Stefan]

This is another hope drug folks.

At the moment I think all are. Question is, what do you do, when your tinnitus is severe?

Because still, through all the procedures and 'hopes,' here some people got better. Or cured!

 

[GoneAway]

What I received asking why it wasn't published sooner.

Naysayers are naysayers because they've lost hope and won't even consider that something might work.

 

[Padraigh Griffin]

This is another hope drug folks.

How do you know? The fact is no one knows until we have a few board members try the treatment. I wouldn't go pissing all over the paper yet. It is well written and, although the lack of control group undermines it, the results are excellent.

 

[GeorgeLG]

There may be red flags but this should not be discarded out of hand.

 

[Christiaan]

Did he give you more information such as some time frame? Did he mention anything else?

No, unfortunately not. I can ask Dr. De Ridder your question when I have an appointment with him on the 11th of April.

 

[Christiaan]

Dr. De Ridder is AWESOME!!! Always willing to try more treatments it looks like.

How worrisome is the possible bias in the study?

Dr. De Ridder hasn't explained in our mail exchange to what extent the bias may be worrisome. It's just that it is fair to consider the possibility of bias when there's no control group or that the research is conducted by a private clinic.

 

[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.

 

[Christiaan]

Hi @Christiaan, did you ask Dr. De Ridder for this treatment specifically?

If they were to offer it here in EU, I would be highly interested in it.

Hi @EDDTEKK. Yes, I asked him specifically about this study/treatment.

 

[DimLeb]

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.

 

[Padraigh Griffin]

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.

I could not agree more. Keep spreading it. Nothing to be lost. Lots to be gained. I'd go for the treatment in a heartbeat if it was in my area.

 

[DimLeb]

I could not agree more. Keep spreading it. Nothing to be lost. Lots to be gained. I'd go for the treatment in a heartbeat if it was in my area.

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 also 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.