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

[AnthonyMcDonald]

I live in the United States and went to an audiologist that treats tinnitus and hyperacusis through TRT. I am 3.5 months in and it's going pretty well. My sound tolerance has improved quite a bit.

You would have improved like this anyways without spending tons of money on TRT.

 

[OnlyUP]

You would have improved like this anyways without spending tons of money on TRT.

Maybe. But I felt pretty desperate at the time and the counseling piece has helped. So, worth it for me. The money is spent and I'm not looking back!

 

[DoesItStop]

I found a doctor who is willing to do the procedure in Switzerland, close to where I live. However, after the recent posts in this thread, I'm a lot more cautious to try it out. Also, the publication does not mention several details which could be critical, such as the concentration of the Lidocaine used for the nerve block.

Is it true what someone mentioned in this thread that the first author of the publication is willing to do remote (video chat) instruction on how the procedure is performed correctly? I could try to get them to get in contact with the doctor here.

Any update on this? My doctor at the Mayo Clinic felt nerve blocks with Lidocaine could be a beneficial option, but she is unwilling to review the South Korean paper that was published detailing how they do it. She said she would just be doing it the way she does for patients with facial pain etc. I am concerned about the amount of Lidocaine she'd use, and also the size of the needle. It would be great if there were a doctor in Switzerland who would be willing to use the South Korean needles and follow their procedure, at least I'd have some peace of mind knowing it's probably not going to get worse.

 

[ibd]

Any update on this?

No update yet. The doctor told me that he'd likely be using needles that are usually used (sorry, I don't have more information than that) instead of the custom-developed ones. The clinic has experience with nerve blocks near the ear for example for migraine patients.

I'll first be reaching out to the Korean doctor to confirm what was said here, then I'll be trying to set up a meeting so the doctors can talk to each other. I have an upcoming trip for work, so I don't think I'll have any updates on this before September.

 

[ibd]

I talked to my doctor here today and he is happy to have a chat with the Korean doctor. I'm now waiting for a response from the correspondence address given in the original publication.

 

[Chinmoku]

@Chinmoku, how are you doing now? What's going on with you and the treatment?

Thank you for your concern. I will give another update, more informal.

Treatment: as far as I am concerned, the treatment failed spectacularly on me, and not only failed, made me much worse, to a very dangerous point. Whether it was the Lidocaine-Clonazepam interaction, whether the Lidocaine injections on those sites are risky for some patients (even at 0.5% concentrations and 0.7ML volume), whether in my case stimulation overrode sedation, it's still very elevated and it's a daily fight minute by minute against torture to stay around. I should have stopped after the first or second treatment, having seen no minimal momentary reduction due to the supposed sedating effect of Lidocaine, but they insisted I had to go on. They even insisted after treatment 6, where I was basically 95% suicidal. I firmly stopped at treatment 6 and showed the evidence I had collected on the points above.

So what follows is more damage control than comments on the therapy.

For a few weeks we have been trialling several medications in a desperate attempt to bring me back to a level that would make the flight back bearable. At least the clinic has been very cooperative in this. Even if I manage this, however, my life has been further ruined, I don't know what will happen to me even if I manage to get back home. The lesson I learned from this is that even a published study reviewed by two tinnitus researchers doesn't offer much of a guarantee. We knew this already, we have published studies even of higher quality including placebo (Pramipexole, Sertraline) that then turn out to be mostly ineffective or further damage some patients. So we have confirmation of this, for this evil condition everyone is different.

I still hope in some symptom reduction before going back. I will update further once I am back home, if I make it there.

Thank you to everyone concerned.

 

[Uklawyer]

@Chinmoku, I am so very sorry to read this. This is a cruel condition. I so hope that there is something out there that will help you with it. I do not know which medication you have tried. No other benzos to try? I know that @Greg Sacramento suggested some medication also.

I wish someone could convince Susan Shore to provide some insight into her trial results and/or take some patients on compassionate grounds prior to FDA approval.

I am rooting for you. Perhaps some hallucinogenic plants might be worth a shot. I wish people had stuck around here to provide more on info on these. My thread on Iboga has some info if of interest.

I really hope there is something for you.

Best wishes, friend.

 

[AnthonyMcDonald]

I'm sorry for bumping this thread, but is the general consensus that this treatment is ineffective? It's still kind of hard to grasp the fact that they would lie, but I guess being nice/professional does not mean that something isn't a scam.

 

[Gb3]

I'm sorry for bumping this thread, but is the general consensus that this treatment is ineffective? It's still kind of hard to grasp the fact that they would lie, but I guess being nice/professional does not mean that something isn't a scam.

I'd be nice too if I knew I was getting this influx of money based off a bogus study that I wrote. Let's face it, they claimed like 90 percent of people were "cured" but people have had this treatment and they haven't even noticed any effectiveness. Where are all the people that had this miraculous improvement?

 

[Joe Cuber]

Where are all the people that had this miraculous improvement?

Since their practice is in South Korea, I wonder if their clients are predominantly Korean. Is there a way to search Korean forums to see if anyone has reported positive results?

 

[AnthonyMcDonald]

I'd be nice too if I knew I was getting this influx of money based off a bogus study that I wrote. Let's face it, they claimed like 90 percent of people were "cured" but people have had this treatment and they haven't even noticed any effectiveness. Where are all the people that had this miraculous improvement?

I'm sure their excuse for foreign doctors ineffectiveness is "Oh they didn't do it right, you have to come to us".

I feel bad for the Dutch guy who expects this to be a cure. However, his whole campaign seems kind of sus as well.

 

[Ultra]

Since their practice is in South Korea, I wonder if their clients are predominantly Korean. Is there a way to search Korean forums to see if anyone has reported positive results?

I can't find where it is exactly, but I remember that earlier in this thread, someone here had a contact in Korea and had him do a search on various Korean forums, and they couldn't find much...

EDIT: I found it, it's here : https://www.tinnitustalk.com/posts/641653/

 

[GPL]

Chinmoku:

I am so sorry your treatment did not work, and I hope your tinnitus will settle down again to a more tolerable level.

Thank you for being so brave for yourself and for us all who suffer this horrible curse.

Without brave people like yourself, life would be a much harder to endure for us all.

Many Thanks. God Bless You.

Keith

 

[Tom Parijs]

Hey guys.

Here is the Dutch boy. I've already passed I see haha.

I am flying to Seoul, Korea on the 1st of August. First treatment is on the 4th of August. I have already read the comments but still want to give it a try because I am hopeless and suffer very seriously from my tinnitus. The only thing that keeps me strong is my 2-year-old son.

I am going with another man, 61 years old, who also suffers from his tinnitus (10/10 everyday and severe hyperacusis). I will share our experiences here so that we get an even better picture of the treatment. I don't believe in being cured there. But it might relieve it a little so that I can catch my breath to wait for other treatments to come.

I have raised a lot of money with my crowdfund. I can only use that for treatments I have to justify everything with receipts. The rest of the money is all donated to charities for tinnitus research. Maybe I can decide with you which ones are the best to donate to.

I am one of you. I suffer greatly and I am on your side. Please tell me there is still hope for us because I don't know how long I can mentally keep this up.

What a terrible disease!

Greetings,
Tom

 

[Chinmoku]

Hey guys.

Here is the Dutch boy. I've already passed I see haha.

I am flying to Seoul, Korea on the 1st of August. First treatment is on the 4th of August. I have already read the comments but still want to give it a try because I am hopeless and suffer very seriously from my tinnitus. The only thing that keeps me strong is my 2-year-old son.

I am going with another man, 61 years old, who also suffers from his tinnitus (10/10 everyday and severe hyperacusis). I will share our experiences here so that we get an even better picture of the treatment. I don't believe in being cured there. But it might relieve it a little so that I can catch my breath to wait for other treatments to come.

I have raised a lot of money with my crowdfund. I can only use that for treatments I have to justify everything with receipts. The rest of the money is all donated to charities for tinnitus research. Maybe I can decide with you which ones are the best to donate to.

I am one of you. I suffer greatly and I am on your side. Please tell me there is still hope for us because I don't know how long I can mentally keep this up.

What a terrible disease!

Greetings,
Tom

Tom, I wish you and your travel companion much better luck than I had.

Just a warning: if the first treatments worsen you and the tinnitus doesn't oscillate temporarily down with the Lidocaine or does not go down the day after, be very careful in deciding to continue.

In term of finances, all included, you will need about 10k. Please do not donate to the BTA or ATA, that's money wasted, look at Action for Hearing Loss (now called RNID) or other research proactive charities.

Good luck and fingers crossed.

 

[AnthonyMcDonald]

suffer very seriously from my tinnitus.

It's so severe he can go to parties and relax with friends on the terrace.

 

[Gb3]

Welcome @Tom Parijs! I'm sorry to hear about your suffering. Thank you for bringing some attention to our terrible affliction.

How long have you had tinnitus? I heard it's noise induced? I believe with most noise induced cases it gets a lot better after time but you have to be patient.

I, like you, have small children; 3 year old, 2 year old, and 4 month old. It's amazing what strength our children can bring us!

Good luck!

 

[Tom Parijs]

Just a warning: if the first treatments worsen you and the tinnitus doesn't oscillate temporarily down with the Lidocaine or does not go down the day after, be very careful in deciding to continue.

Dear Chinmoku,

I have a lot of respect for you. I have read your story. You are a strong person for still fighting after this nightmare. I'll definitely take that into account.

I use Google translate because my English is not that good which is why my texts are sometimes wrong.

Thank you!

Greetings,
Tom

 

[Tom Parijs]

It's so severe he can go to parties and relax with friends on the terrace.

Dear AnthonyMcDonald,

What the media has written about me is wrong. I really don't go to parties. I started being very withdrawn.

If you have requested euthanasia while you have a child, it says enough about the seriousness of the situation, I think.

The media has approached me and agreed to warn people of what loud noise can do to a person's life.

I hope you can understand me.

Greetings,
Tom

 

[Tom Parijs]

Welcome @Tom Parijs! I'm sorry to hear about your suffering. Thank you for bringing some attention to our terrible affliction.

How long have you had tinnitus? I heard it's noise induced? I believe with most noise induced cases it gets a lot better after time but you have to be patient.

I, like you, have small children; 3 year old, 2 year old, and 4 month old. It's amazing what strength our children can bring us!

Good luck!

Hi Gb3,

Yes, I've had tinnitus for about 9 months now. I like to have sound around me that camouflages the tinnitus a bit. Left ear is a ball of energy; I feel it sitting behind the ear. When I yawn, I feel the tinnitus. A low-pitched sound but oh so powerful. And right ear has a very high-pitched beep. It is never too powerful for the background.

But thanks for your information. It makes me feel good. I love to be a member here on Tinnitus Talk. It gives me strength knowing I'm not the only one who struggles and suffers every day.

The love for children is indeed very great and beautiful. You can only feel that if you have children yourself. Let's hope that love will pull us through and that a solution can be found for us tinnitus patients.

Thank you for your message!

 

[BrysonKingMe]

It's so severe he can go to parties and relax with friends on the terrace.

Hey Tom,

I went to Korea and saw very minimal results. I also agree you have lots of time to improve naturally, but it seems your mind is made up, so good luck.

As far as @AnthonyMcDonald goes, I suggest you block him immediately. He spews nothing but negativity, thinking his tinnitus is worse than anyone in the world's.

He claimed my tinnitus was mild, when in fact I have very severe reactive tinnitus that happens to fluctuate very much. He will downplay your condition for no reason.

He is also an outright liar, claiming he has several years of medical education. So do yourself a favor and block/ignore everything he says.

 

[InNeedOfHelp]

Hey guys.

Here is the Dutch boy. I've already passed I see haha.

I am flying to Seoul, Korea on the 1st of August. First treatment is on the 4th of August. I have already read the comments but still want to give it a try because I am hopeless and suffer very seriously from my tinnitus. The only thing that keeps me strong is my 2-year-old son.

I am going with another man, 61 years old, who also suffers from his tinnitus (10/10 everyday and severe hyperacusis). I will share our experiences here so that we get an even better picture of the treatment. I don't believe in being cured there. But it might relieve it a little so that I can catch my breath to wait for other treatments to come.

I have raised a lot of money with my crowdfund. I can only use that for treatments I have to justify everything with receipts. The rest of the money is all donated to charities for tinnitus research. Maybe I can decide with you which ones are the best to donate to.

I am one of you. I suffer greatly and I am on your side. Please tell me there is still hope for us because I don't know how long I can mentally keep this up.

What a terrible disease!

Greetings,
Tom

Hi Tom, welkom

Wish you the best with your travels.

Please keep in mind that there are actual treatments in the pipeline which are either placebo controlled or have shown great results in the trials. As a matter of fact, one treatment (Dr. Susan Shore) is finishing the final trial this month before market approval, after 15+ years of research. We are eagerly awaiting the results.

If you are at your wit's end (wanhopig), I'd suggest to contact the Brai3n clinic in Gent, Belgium. A very renowned tinnitus expert works there (Prof. Dirk de Ridder). They do video conferences, as well as experimental treatments and medication combinations.

As for the euthanasia part, i guess many of us relate and understand, but many here are also hanging on. Despite their terrible situations. Because we know that the first treatments are (relatively) around the corner.

 

[Fields]

I have my reservations about the fundraiser, but I wish you the best of luck with the treatment.

 

[2noist]

As far as @AnthonyMcDonald goes, I suggest you block him immediately. He spews nothing but negativity, thinking his tinnitus is worse than anyone in the world's.

I agree. @Tom Parijs, don't mind @AnthonyMcDonald. Ignore him. He enjoys bringing others down. He only accepts your suffering if it meets his ridiculous standards. God forbid if you are able to go to a restaurant!!! Can't have bad tinnitus then!!!

I have my fingers crossed for your treatment. Stay strong for your child! I look forward to reading how you go on.

 

[Tom Parijs]

Hey Tom,

I went to Korea and saw very minimal results. I also agree you have lots of time to improve naturally, but it seems your mind is made up, so good luck.

As far as @AnthonyMcDonald goes, I suggest you block him immediately. He spews nothing but negativity, thinking his tinnitus is worse than anyone in the world's.

He claimed my tinnitus was mild, when in fact I have very severe reactive tinnitus that happens to fluctuate very much. He will downplay your condition for no reason.

He is also an outright liar, claiming he has several years of medical education. So do yourself a favor and block/ignore everything he says.

Hey @BrysonKingMe.

Thank you for your message. Too bad you didn't get much results. I have already arranged everything for Korea so I want to go anyway. Do I have any alternatives instead of giving it time?

Reactive tinnitus seems really terrible to me. It is also impossible to compare tinnitus. I trust when someone says they are suffering from their tinnitus.

Haha, we can't use negativity, as if it wasn't heavy enough already. Thanks for your information about @AnthonyMcDonald.

Greetings,
Tom

 

[Tom Parijs]

I agree. @Tom Parijs, don't mind @AnthonyMcDonald. Ignore him. He enjoys bringing others down. He only accepts your suffering if it meets his ridiculous standards. God forbid if you are able to go to a restaurant!!! Can't have bad tinnitus then!!!

I have my fingers crossed for your treatment. Stay strong for your child! I look forward to reading how you go on.

Thank you @2noist.

I will keep you all up to date.

 

[EDDTEKK]

Hi Tom.

I am with you. Good luck in Korea.

I (41) also have a child of 2.5 years old. I will consider assisted suicide if my tinnitus does not get better.

If this treatment works for you or your friend, I might also try it.

Wish you all the best,
EDDTEKK

 

[Tom Parijs]

Hi Tom, welkom

Wish you the best with your travels.

Please keep in mind that there are actual treatments in the pipeline which are either placebo controlled or have shown great results in the trials. As a matter of fact, one treatment (Dr. Susan Shore) is finishing the final trial this month before market approval, after 15+ years of research. We are eagerly awaiting the results.

If you are at your wit's end (wanhopig), I'd suggest to contact the Brai3n clinic in Gent, Belgium. A very renowned tinnitus expert works there (Prof. Dirk de Ridder). They do video conferences, as well as experimental treatments and medication combinations.

As for the euthanasia part, i guess many of us relate and understand, but many here are also hanging on. Despite their terrible situations. Because we know that the first treatments are (relatively) around the corner.

Thank you for your informative message. I will look it up. Maybe an idea for after Korea.

It's nice that there are people who understand my feelings and who can possibly give me information about what I can still try and what's to come. I really appreciate it.

Thanks!

 

[Tom Parijs]

Hi Tom.

I am with you. Good luck in Korea.

I (41) also have a child of 2.5 years old. I will consider assisted suicide if my tinnitus does not get better.

If this treatment works for you or your friend, I might also try it.

Wish you all the best,
EDDTEKK

Thank you very much!

I promised my son when he was born that I would always be there for him and protect him.

But the tinnitus is killing me completely. Another person can't put a smile on my face anymore. But I can take a lot so if there are prospects, I don't give up. I am a fighter just like you.

Stay strong! ️

I will keep you updated!

 

[AnthonyMcDonald]

God forbid if you are able to go to a restaurant!!! Can't have bad tinnitus then!!!

If someone can go to a restaurant and not spike from 80-85 dB then yes, they are not catastrophic.

He enjoys bringing others down.

Brother, I don't bring anyone down I let others have hope knowing how fucking horrible it can get and that they can definitely get out if their situation. Also I dislike positivity preachers, as they always make tinnitus look like not a big deal.

thinking his tinnitus is worse than anyone in the world's.

Trust me, if you or someone else who can go to restaurants and walk around the city heard what I or @DocTors_94 did, plus the insane permanent reactivity from <30 dB, you wouldn't say "thinks".

He will downplay your condition for no reason.

Sorry, but I don't down downplay anyone's condition "for no reason". The only reason assumed you were mild/moderate (and I did not call you out or anything, I just wrote that in my post some mild people didn't see effectiveness of the treatment) was the ability to walk around a 100 decibel city or go to restaurants without immediately permanently spiking, and having "silent days", as you said. So I'm sorry if I assumed that you were mild, when you are in fact, by your words, not.