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

[OptimusPrimed]

Why do you think that this screams placebo?

No full cure of tinnitus, very mixed results, lots of guys doing it with little or no result. Just based on what I'm reading it doesn't seem like there's much validity in it.

 

[Watasha]

No full cure of tinnitus, very mixed results, lots of guys doing it with little or no result. Just based on what I'm reading it doesn't seem like there's much validity in it.

There is probably never going to be "full cure" for all types of tinnitus, at one time, just due to the existence of subtypes.

These results below don't look "very mixed" to me. Are we referring to the same study?

Results: In more than 87.5% of patients (14/15 subacute, 35/40 chronic), tinnitus disappeared or had significantly reduced by the end of the treatment. The mean T-VAS score reduced significantly from 7.13 to 0.60 in the subacute group and from 7.73 to 1.53 in the chronic group by the end of treatment (p < 0.05). The benefits were maintained after treatment cessation and at the 1-year follow-up. The average number of treatment procedures was 9.8 ± 3.589 (range, 5–15) in the subacute group and 9.775 ± 3.717 (range, 5–18) in the chronic group.

 

[Nobody19]

These results below don't look "very mixed" to me. Are we referring to the same study?

Results: In more than 87.5% of patients (14/15 subacute, 35/40 chronic), tinnitus disappeared or had significantly reduced by the end of the treatment. The mean T-VAS score reduced significantly from 7.13 to 0.60 in the subacute group and from 7.73 to 1.53 in the chronic group by the end of treatment (p < 0.05). The benefits were maintained after treatment cessation and at the 1-year follow-up. The average number of treatment procedures was 9.8 ± 3.589 (range, 5–15) in the subacute group and 9.775 ± 3.717 (range, 5–18) in the chronic group.

That study doesn't even have a control group.

 

[Watasha]

That study doesn't even have a control group.

They explain why they don't have a control group. And with improvements that stark, I'd say you don't need one to have some confidence that the treatment works. I'll take what amounts to like a 90% improvement even if it's placebo.

 

[OptimusPrimed]

There is probably never going to be "full cure" for all types of tinnitus, at one time, just due to the existence of subtypes.

These results below don't look "very mixed" to me. Are we referring to the same study?

Results: In more than 87.5% of patients (14/15 subacute, 35/40 chronic), tinnitus disappeared or had significantly reduced by the end of the treatment. The mean T-VAS score reduced significantly from 7.13 to 0.60 in the subacute group and from 7.73 to 1.53 in the chronic group by the end of treatment (p < 0.05). The benefits were maintained after treatment cessation and at the 1-year follow-up. The average number of treatment procedures was 9.8 ± 3.589 (range, 5–15) in the subacute group and 9.775 ± 3.717 (range, 5–18) in the chronic group.

No control group... I have seen this many times before and it always turns out to be a dud. Yes, multiple types of tinnitus or multiple causes, but here we are and there isn't a true treatment for any of them, let alone a cure.

 

[Watasha]

No control group... I have seen this many times before and it always turns out to be a dud. Yes, multiple types of tinnitus or multiple causes, but here we are and there isn't a true treatment for any of them, let alone a cure.

Gotcha, I haven't seen any examples that I can recall that showed such stark results and then didn't pan out. Hope this one bucks the trend, it sounds good in theory.

 

[Daniel Lion]

How often is the patient to do the treatment? Once a year? How long do the positive effects last?

 

[Nobody19]

They explain why they don't have a control group. And with improvements that stark, I'd say you don't need one to have some confidence that the treatment works. I'll take what amounts to like a 90% improvement even if it's placebo.

That doesn't really matter, you need a control group to see if the improvement is linked to the placebo effect in any way. Just look at the various drug trials that failed because the placebo groups saw similar benefit.

 

[Watasha]

That doesn't really matter, you need a control group to see if the improvement is linked to the placebo effect in any way. Just look at the various drug trials that failed because the placebo groups saw similar benefit.

Are you suggesting that the placebo effect is so strong the individuals can feel basically cured? A control group is always preferred, but the lack of one doesn't prove the treatment doesn't work just as much as it doesn't prove that the treatment works. Regardless, I think our time would be better spent emailing and calling our government officials than speculating over existing trials.

 

[Nobody19]

Are you suggesting that the placebo effect is so strong the individuals can feel basically cured?

We need a control group to answer that question.

 

[Watasha]

We need a control group to answer that question.

Yes, to definitively answer. But for now, I'll take some placebo.

 

[addot]

Are you suggesting that the placebo effect is so strong the individuals can feel basically cured?

Yes. The placebo effect can be so strong that people who got placebo surgeries think they were cured. It's why it's so dangerous; people don't just respond to it a little, they can respond to it spectacularly.

Like you, there's a part to me that thinks that, hey, if it works, it works. I'll never blame or think less of anyone who seeks out this treatment. But is this something that can be replicated? That can be made accessible to more tinnitus sufferers? That can, hopefully, become the new standard of care? To do that, you need to beat placebo.

Edit: to be clear, I have no horse in this particular race. The idea that facial nerves can be a good target for tinnitus and hyperacusis isn't unique to this study, and it probably holds some promise. I just don't think it holds as much promise as the results you quoted elsewhere make it seem.

 

[Watasha]

Yes. The placebo effect can be so strong that people who got placebo surgeries think they were cured. It's why it's so dangerous; people don't just respond to it a little, they can respond to it spectacularly.

Like you, there's a part to me that thinks that, hey, if it works, it works. I'll never blame or think less of anyone who seeks out this treatment. But is this something that can be replicated? That can be made accessible to more tinnitus sufferers? That can, hopefully, become the new standard of care? To do that, you need to beat placebo.

Edit: to be clear, I have no horse in this particular race. The idea that facial nerves can be a good target for tinnitus and hyperacusis isn't unique to this study, and it probably holds some promise. I just don't think it holds as much promise as the results you quoted elsewhere make it seem.

There is such a thing as "dose-dependent" control groups when traditional control groups are absent.

"Instead, we compared the effects of our treatment method between patients with subacute and chronic tinnitus, between pre-treatment and mid-treatment timepoints, between pre-treatment and end of treatment, and between mid-treatment and end of treatment."

These types of comparisons can show if the treatment has a cumulative effect and can help to provide an alternative in the absence of a control group.

Hopefully someone picks up this study and does more with it.

 

[BrysonKingMe]

How are you doing @Tom Parijs?

 

[AfroSnowman]

So I haven't been following this thread too closely, but is our current score of first person reports ranging from no beneficial effect to highly harmful?

 

[Toby1972]

So I haven't been following this thread too closely, but is our current score of first person reports ranging from no beneficial effect to highly harmful?

Tom Parijs wrote 2 weeks earlier:

I have had 6 treatments now. After each treatment I got spikes in hyperacusis and the next day it went down again. Today during the 6th treatment my right ear got a big drop of 15% to 20%. And it's been like that all day. No effect on the left ear yet, but that's a sound I might get used to in the future.

My 61-year-old friend had his 10th treatment today. Today during his treatment he went from a 10 to a 4 in both ears. He has a fluctuating type of tinnitus. After 15 days in the hotel room, he went into town for the first time today.

Any update, Tom?

 

[Nobody19]

Any update, Tom?

He posted a new update on his blog. He saw further improvements. He's at 9 treatments now.

https://www.tomparijs.nl/2022/08/23/behandeling-7-8-en-9/

 

[Fields]

He posted a new update on his blog. He saw further improvements. He's at 9 treatments now.

In the blog he mentions he has also started working towards some form of acceptance.

This makes sense, though: he has been able to take an extended absence of leave from work, doesn't have to worry about finances, has a boatload of spare time to exercise while he's there, and apparently he brought his father-in-law for the first 2 weeks and has now flown in his brother for support.

I don't know if their expenses are being paid for with the fundraiser money, too, but getting access to €40,000 (!) sure makes things a lot easier. Maybe I should start my own suicide campaign. :/

 

[Diego LR]

In the blog he mentions he has also started working towards some form of acceptance.

This makes sense, though: he has been able to take an extended absence of leave from work, doesn't have to worry about finances, has a boatload of spare time to exercise while he's there, and apparently he brought his father-in-law for the first 2 weeks and has now flown in his brother for support.

I don't know if their expenses are being paid for with the fundraiser money, too, but getting access to €40,000 (!) sure makes things a lot easier. Maybe I should start my own suicide campaign. :/

This is a bit judgmental. Good for him that he got the support that he needed and that he is getting better. Please let us use this forum to support each other. There is enough suffering as it is.

 

[Nick47]

Nothing to see here so far unfortunately. Study at first glance looks good but placebo control groups are critical; look what it did to OTO-313.

And like a poster above mentioned, anecdotal (which I don't put much value into) evidence is saying nothing positive.

 

[Daniel Lion]

My gut tells me that this is an effective therapy for some folks. How long the effects last is a big question for me. I have more faith in this methodology than Dr. Shim's PRP intratympanic injections.

Dangerous stuff either way, and brave sufferers who venture to do these procedures.

Of course, wishing all best of luck and great results. Tinnitus is brutal.

P.S. OTO-313 would not have helped any of us as far as I could tell, from the get go, unless you were a soldier who suffered a bomb blast and took it immediately. OTO-413 is aimed at healing nerves and that is much better for us.

 

[Antoine1975]

He posted a new update on his blog. He saw further improvements. He's at 9 treatments now.

Today he posted another update, which isn't the update we all wanted to hear. In the last update he already mentioned that he saw improvement in his tinnitus on his right side, but the left side stayed on the same level.

After 6 more treatments, his tinnitus went through the roof and was worse than when he started the journey, but now it is roughly at the same level as before all the treatments in Seoul. He has another two weeks of treatments in front of him and he really hopes that it can be as beneficial as it was in the first couple of weeks, otherwise he has to take the loss and try to move on with the current situation.

Really unfortunate for my fellow country - and city-member @Tom Parijs. I hope he continues his battle and finds some peace in the fact that his journey isn't totally for nothing, as his story drew the attention of both local and national media over here in the Netherlands (last week I saw two major articles run in the 'Algemeen Dagblad' about tinnitus), but, above all, I really hope that in the next two weeks things do get better for him.

And although this is my first post here, I'm a longtime visitor of Tinnitus Talk. Tom's story came to my attention after my brother-in-law mentioned it after seeing it on Facebook and of course, since I have both tinnitus and hyperacusis as well, I really hoped to hear some good news.

 

[InNeedOfHelp]

Hi @Tom Parijs, reading you are not doing well and that the tinnitus has worsened. I hope it goes down for you again. Spikes can be heavy, even the temporary ones.

 

[Chinmoku]

So sorry to hear this about Tom. After all the anecdotal cases we went through, I wonder what is left of the claimed success of the original study. I had a bad experience myself but was really hoping for the best for everyone else. Damn.

 

[Daniel Lion]

Any word from the helicopter pilot? Or Tom's friend who had experienced a huge reduction and went out to see the city as a result of this?

Hello @Chinmoku, @BrysonKingMe and @Tom Parijs, my friends and fellow sufferers. Thank you for being so brave and reporting back to us. It means so much.

I am sorry we are all here.

 

[BadNeighbors]

I've been watching this thread with a bit of hope, despite the fact that I don't like how the study was done.

First, we don't know what caused Tom's migraine. It could have been the treatment or it could have been that he has a history of migraines. There is no way to know. But, I think we all know illness can cause spikes.

Second, Tom posted this one yesterday:

The last few days my right ear has been much better. A really big reduction. It goes up and down but seems to be getting more stable in the last few days. The left doesn't do anything but I expected it beforehand. But what I want to say is that I am sitting here with one of the most serious tinnitus patient in the Netherlands and he is also responding very well.

This could be placebo, it could be him not wanting to let one of his readers down, it could be that the treatment does have some benefit (for some people), it could be anything.

Third, I can't imagine that funding a study to test this method could be too expensive. It seems like low hanging fruit for any doctor who could obtain an NIH grant.

Finally, @Chinmoku, sorry the treatment didn't offer positive results for you.

 

[Daniel Lion]

Does anybody have any idea what kind of tinnitus this is most effective for? Do people with noise or TMJ induced tinnitus respond well?

Any idea what @Tom Parijs and his friend's tinnitus is, e.g., auto immune, noise induced, TMJ etc.?

 

[Greg Sacramento]

Lidocaine Interactions Checker - Drugs.com

 

[Ben Winders]

Any idea what @Tom Parijs and his friend's tinnitus is, e.g., auto immune, noise induced, TMJ etc.?

It's in the thread: Tom's is noise induced > hard style party.

 

[BrysonKingMe]

Hello @Chinmoku, @BrysonKingMe and @Tom Parijs, my friends and fellow sufferers. Thank you for being so brave and reporting back to us. It means so much.

Thanks, but it was out of desperation.

I spoke to Dr. De Ridder the other day, and he said these guys have no association with any tinnitus experts in Korea, and they quite literally popped up out of the blue with the research paper.

Looking back, my "results" were probably placebo, as my tinnitus is so variable anyways. It did seem to make the mornings less intense. But tapering Clonazepam has definitely gotten rid of any results that I may/may not have seen.

All in all, I would not recommend anyone do this treatment.

Something interesting to me is that Dr. Soo Ji was BEGGING me to respond to her emails that she would send as a follow up to check up on me. I have yet to receive a single email from her.

Maybe this works for purely somatic tinnitus, but it sure as shit didn't work for me, the guy I met in Korea, or @Chinmoku. Far from the 90% success rate they claimed in the paper.

I can't scientifically call it a scam since not a lot of people have gone and done this, but I can personally call it a scam from my experience.