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

[Cory_]

How is he so well-spoken???

 

[Chinmoku]

I'm sorry to hear this has not worked out well, @Chinmoku. Have you thought about joining a clinical trial for DBS or XEN1101 (if you have MDD)? Both require multiple MRIs, though, as part of their processes. So it might not work for your situation. But there are a few clinical trials on the horizon.

Hi Jerad, I have several symptoms of depression but I'm not technically depressed, it's just the reaction to the extreme pain and to a life completely destroyed. Who wouldn't have some reactive depression then, but it's not MDD. Maybe they might find I have it after all, but there is no way I can have MRIs. I have two other health conditions that would have required a MRI but we had to do with a CT scan and an ultrasound. MRI would kill me, not that it will make much of a difference if this trend continues. There are some "silent MRI"s but they turn out not to be that silent after all and the really silent ones are only private and super-expensive, a scan in London would cost about $1200 and insurance may or may not cover it.

 

[Joeseph Stope]

Hi Jerad, I have several symptoms of depression but I'm not technically depressed, it's just the reaction to the extreme pain and to a life completely destroyed. Who wouldn't have some reactive depression then, but it's not MDD. Maybe they might find I have it after all, but there is no way I can have MRIs. I have two other health conditions that would have required a MRI but we had to do with a CT scan and an ultrasound. MRI would kill me, not that it will make much of a difference if this trend continues. There are some "silent MRI"s but they turn out not to be that silent after all and the really silent ones are only private and super-expensive, a scan in London would cost about $1200 and insurance may or may not cover it.

My fullest sympathy for you and hope that the tinnitus subsides as time goes on.

Hope seems to be the best remedy we have at the moment.

 

[Christiaan]

Oh boy, I don't know what to make of this, but I've read a story about a Dutch tinnitus sufferer who thinks this treatment could be his last resort. His family organised a crowdfunding campaign to financially support him in this endeavour. He also hopes to bring this treatment to Europe.

The text is a rough translation of the original Dutch article.

Tom's ringing in the ears is so bad that he even drafted a euthanasia statement

Since November of last year, Tom Parijs from Den Bosch is no longer a shadow of himself. After a hardcore festival in Eindhoven, his hearing went horribly wrong: tinnitus. Since then, between the whistling, Tim has heard a "fighter jet sound" in one ear and a shrill beep in the other continuously. So much so that the former hedonist had a euthanasia declaration drawn up. But recently, with a new treatment from South Korea, there has been a glimmer of hope.

Life smiled at Tom Parijs for a long time: 34 years, married to Janneke and father of son Thomas. "I was known as a bon vivant and I was happy. Nothing wrong. Nine months later you draw up a euthanasia statement."

Back to November 2021. Tom is going to a hardcore festival in Eindhoven with seven friends. The group had a pleasant evening.

"The music was loud. Only one of the friends had earplugs with him." Two days later, things go completely wrong for Tom. "From that moment on my ears started ringing, followed by the other sounds. It was the bill for years of walking and festivals without protective earplugs."

Tom pays a hefty price. The continuous sound is going to rule his life. "You don't have a moment of rest. That's why I lost all energy. I can't relax. I take antidepressants and can't sleep without medication. I started to isolate myself more and more and was on the run from myself." Sometimes Tom goes to a party as a distraction. "On the way home I howled ."

He ends up in the medical mill and tackles everything to get rid of the tinnitus. "Nobody could help me." In the end Tom, much to his sorrow, talks to his family about drawing up a euthanasia statement.

Fortunately it doesn't come to that. At the end of June, a friend tells about a new treatment for tinnitus in South Korea on a terrace. Nerve blocks are placed on the auditory nerve and around the ear with specially developed needles, which reduces the tinnitus.

"The first results are promising. The tinnitus decreased in eight out of ten people. The intensive treatment lasts three months. I immediately called: I will fly to South Korea in three weeks."

To pay for the expensive treatment, Tom started a crowdfunding campaign. The target amount of 35,000 euros will be achieved within twelve hours. Thursday evening at ten o'clock, the counter stands at 40,000 euros.

What is Tom hoping for? "If my tinnitus gets a lot less because of the treatment, I can cry with happiness. If it no longer controls my life, I'm a happy person," says Tom.

The money left over after the treatment is used for research, he says. He also tries to bring the treatment from South Korea to the Netherlands. He also wants to tell festival-goers to wear good hearing protection. "I didn't notice and two days later it was already too late."

 

[InNeedOfHelp]

Oh boy, I don't know what to make of this, but I've read a story about a Dutch tinnitus sufferer who thinks this treatment could be his last resort. His family organised a crowdfunding campaign to financially support him in this endeavour. He also hopes to bring this treatment to Europe.

The text is a rough translation of the original Dutch article.

Tom's ringing in the ears is so bad that he even drafted a euthanasia statement

View attachment 50887

Since November of last year, Tom Parijs from Den Bosch is no longer a shadow of himself. After a hardcore festival in Eindhoven, his hearing went horribly wrong: tinnitus. Since then, between the whistling, Tim has heard a "fighter jet sound" in one ear and a shrill beep in the other continuously. So much so that the former hedonist had a euthanasia declaration drawn up. But recently, with a new treatment from South Korea, there has been a glimmer of hope.

Life smiled at Tom Parijs for a long time: 34 years, married to Janneke and father of son Thomas. "I was known as a bon vivant and I was happy. Nothing wrong. Nine months later you draw up a euthanasia statement."

Back to November 2021. Tom is going to a hardcore festival in Eindhoven with seven friends. The group had a pleasant evening.

"The music was loud. Only one of the friends had earplugs with him." Two days later, things go completely wrong for Tom. "From that moment on my ears started ringing, followed by the other sounds. It was the bill for years of walking and festivals without protective earplugs."

Tom pays a hefty price. The continuous sound is going to rule his life. "You don't have a moment of rest. That's why I lost all energy. I can't relax. I take antidepressants and can't sleep without medication. I started to isolate myself more and more and was on the run from myself." Sometimes Tom goes to a party as a distraction. "On the way home I howled ."

He ends up in the medical mill and tackles everything to get rid of the tinnitus. "Nobody could help me." In the end Tom, much to his sorrow, talks to his family about drawing up a euthanasia statement.

Fortunately it doesn't come to that. At the end of June, a friend tells about a new treatment for tinnitus in South Korea on a terrace. Nerve blocks are placed on the auditory nerve and around the ear with specially developed needles, which reduces the tinnitus.

"The first results are promising. The tinnitus decreased in eight out of ten people. The intensive treatment lasts three months. I immediately called: I will fly to South Korea in three weeks."

To pay for the expensive treatment, Tom started a crowdfunding campaign. The target amount of 35,000 euros will be achieved within twelve hours. Thursday evening at ten o'clock, the counter stands at 40,000 euros.

What is Tom hoping for? "If my tinnitus gets a lot less because of the treatment, I can cry with happiness. If it no longer controls my life, I'm a happy person," says Tom.

The money left over after the treatment is used for research, he says. He also tries to bring the treatment from South Korea to the Netherlands. He also wants to tell festival-goers to wear good hearing protection. "I didn't notice and two days later it was already too late."

I wish people would do some desk research first, especially before starting a fundraiser.

He has bad tinnitus but he still went to parties during his tinnitus and sits on terraces. Not to diminish his tinnitus or anything but that is a bit contradicting. Majority of the bad tinnitus sufferers wouldn't dare to sit on a terrace let alone go to a party for some distraction.

 

[Cory_]

I wish people would do some desk research first, especially before starting a fundraiser.

He has bad tinnitus but he still went to parties during his tinnitus and sits on terraces. Not to diminish his tinnitus or anything but that is a bit contradicting. Majority of the bad tinnitus sufferers wouldn't dare to sit on a terrace let alone go to a party for some distraction.

Majority of the bad tinnitus sufferers have reactive tinnitus / hyperacusis.

 

[Gb3]

Someone should tell them it doesn't work and it's a scam. But they are very polite.

 

[Fields]

Oh boy, I don't know what to make of this, but I've read a story about a Dutch tinnitus sufferer who thinks this treatment could be his last resort. His family organised a crowdfunding campaign to financially support him in this endeavour. He also hopes to bring this treatment to Europe.

I'm surprised he raised that much money in the Netherlands, most people here are pretty apathetic when it comes to tinnitus.

Moreover, the target amount seems kind of... excessive? €10.000 would already be sufficient. For plenty of Dutch people in his age group it's also pretty normal for couples to pull in a double salary, so he could probably easily save up for it himself. Especially considering his so-called bon vivant lifestyle (= expensive).

The stinger though, for me, is that it took years of partying for him to develop tinnitus. I've been carefully looking after my ears from a young age, ever since my late grandmother told me about her tinnitus. In spite of that, it only took 1 earbud mishap for me to develop this affliction.

I've only ever been to 1 concert in my life. Wearing earplugs. Pffffff. I wish Tom all the best and I hope he gets better, but at the same time I kinda feel he can go suck it.

 

[StoneInFocus]

"The first results are promising. The tinnitus decreased in eight out of ten people. The intensive treatment lasts three months. I immediately called: I will fly to South Korea in three weeks."

Does Tom realize these results were published by the clinic itself in a bogus study?

I mean I suppose it doesn't really matter for him anyway because he doesn't have to spend a penny, but my God could you do a lot with 40.000 bucks.

The stinger though, for me, is that it took years of partying for him to develop tinnitus. I've been carefully looking after my ears from a young age, ever since my late grandmother told me about her tinnitus. In spite of that, it only took 1 earbud mishap for me to develop this affliction.

I've only ever been to 1 concert in my life. Wearing earplugs. Pffffff. I wish Tom all the best and I hope he gets better, but at the same time I kinda feel he can go suck it.

There are also plenty of people who go to concerts their whole life and never develop tinnitus as well. Not everyone with hearing damage gets tinnitus or hyperacusis. Life is just unfair, there are no ifs or buts about that.

 

[Wrfortiscue]

Poor guy is going to get his hopes crushed.

 

[Chinmoku]

Poor guy is going to get his hopes crushed.

Someone should point him to this thread.

I had expressed several doubts myself if you re-read the topic, but as I was desperate and there were some positive elements too I decided to try it anyway.

The money you need is much less than 40k, you probably need 10k.

This guy is so close to Ghent. He could try Brai3n first? Unless he believes this study results blindly, which he shouldn't, even with two UK tinnitus researchers having accepted the paper for publication.

 

[Uklawyer]

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

 

[ibd]

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.

 

[Christiaan]

Guys, I've tried contacting him via Facebook (plus carefully tried to nudge him towards Brai3n clinic, XEN1011 & FX-322). No response so far.

There's another article about him today, in which he seems so hellbent on trying this treatment. Ugh. What can we do about it? His mind is already made up, it seems.

Link to new Dutch article:

Tom wil 'straaljager' uit zijn oor laten halen in Zuid-Korea: 'Het is een marteling in mijn hoofd'

 

[Hottopic29]

There's another article about him today, in which he seems so hellbent on trying this treatment. Ugh. What can we do about it? His mind is already made up, it seems.

He only got tinnitus in November. Not even been a year. It may improve still for him. It took 18 months for mine to diminish in 2015.

 

[StoneInFocus]

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.

Soo Ji confirmed that they would be willing to teach international doctors their technique either in person or via video conferencing. So, reach out to your research facilities and see if you can gather some interest. The needles used at the clinic would need to be purchased from Korea.

I'd say give it a shot if you haven't already.

 

[EDDTEKK]

Why doesn't Brai3n offer this treatment? Can somebody ask them if they are aware of the study and if they can maybe implement it as one of their treatment options?

 

[Bambam0]

I'd say give it a shot if you haven't already.

Looking at what Minbo Shim is doing (traveling to the US to train doctors), Soo Ji should probably do the same thing. If Minbo Shim is charging $9k per ear, certainly Soo Ji could charge double in the US than he is in South Korea and make a mint.

 

[StoneInFocus]

Guys, I've tried contacting him via Facebook (plus carefully tried to nudge him towards Brai3n clinic, XEN1011 & FX-322). No response so far.

There's another article about him today, in which he seems so hellbent on trying this treatment. Ugh. What can we do about it? His mind is already made up, it seems.

There's nothing we can do about it now. No point in giving him chicken skin. The money is already collected, the flight is booked, the appointments are made, and someone with suicide-inducing tinnitus is not going to wait 2-3-god-knows-how-many years until a treatment, which may or may not help with tinnitus, becomes available, just because some strangers on the internet told him so. Plus, from what I read of his case, he still goes to restaurants, so I think he will be just fine flying to Korea and back. He never mentions wearing hearing protection once, and his blog does mention something along the lines of exploring Seoul when he gets there.Totally different ballgame from the more hardcore sufferers such as our dear friend @Chinmoku.

Whether the treatment will be successful or not, it is always a good thing that tinnitus gets media attention. Let's hope the clinic can help the man with his symptoms and who knows, if they really manage to alleviate his ringing, maybe it will get the ball rolling and clinics in other countries want to adopt this method too? The article does mention that Tom wants to try to get this treatment to the Netherlands.

Let's all pray or root for Tom.

 

[Fields]

There's nothing we can do about it now. No point in giving him chicken skin. The money is already collected, the flight is booked, the appointments are made, and someone with suicide-inducing tinnitus is not going to wait 2-3-god-knows-how-many years until a treatment, which may or may not help with tinnitus, becomes available, just because some strangers on the internet told him so. Plus, from what I read of his case, he still goes to restaurants, so I think he will be just fine flying to Korea and back. He never mentions wearing hearing protection once, and his blog does mention something along the lines of exploring Seoul when he gets there.Totally different ballgame from the more hardcore sufferers such as our dear friend @Chinmoku.

Whether the treatment will be successful or not, it is always a good thing that tinnitus gets media attention. Let's hope the clinic can help the man with his symptoms and who knows, if they really manage to alleviate his ringing, maybe it will get the ball rolling and clinics in other countries want to adopt this method too? The article does mention that Tom wants to try to get this treatment to the Netherlands.

Let's all pray or root for Tom.

I get where you're coming from, and I know I'm being salty, but this whole €40k fundraiser sounds like he's playing up getting euthanized just to garner interest in his campaign. I think the whole thing is a bit scummy.

"Raise €40k for me or I'm going to commit suicide (euthanasia)."

Based on your information, a large chunk of the money will probably also go to living it up in Seoul.

 

[StoneInFocus]

Based on your information, a large chunk of the money will probably also go to living it up in Seoul.

I don't really think the information I provided here necessarily signifies that conclusion. According to his blog, Tom will spent the day after his arrival recovering from the flight and "orienting himself in the big city with its 25 million inhabitants" [my translation]. I interpreted this as "exploring Seoul" but that is total speculation on my part of course.

Just wanted to make that clear.

 

[ajc]

I don't really think the information I provided here necessarily signifies that conclusion. According to his blog, Tom will spent the day after his arrival recovering from the flight and "orienting himself in the big city with its 25 million inhabitants" [my translation]. I interpreted this as "exploring Seoul" but that is total speculation on my part of course.

Just wanted to make that clear.

Honestly if anybody thinks he is going to give the €30,000 or more to tinnitus research after he's covered his treatment and living expenses in Seoul, they're naive. I would like to see the receipt of such a donation, otherwise I assume he's going to spend the money on himself and his family.

Overall the whole fundraiser was tasteless, the family picture with wife and small baby and talking about euthanasia...

 

[Ela Stefan]

Honestly if anybody thinks he is going to give the €30,000 or more to tinnitus research after he's covered his treatment and living expenses in Seoul, they're naive. I would like to see the receipt of such a donation, otherwise I assume he's going to spend the money on himself and his family.

Overall the whole fundraiser was tasteless, the family picture with wife and small baby and talking about euthanasia...

Totally true! As if you only have the right to live if you have kids and you are young!

 

[StoneInFocus]

I would like to see the receipt of such a donation, otherwise I assume he's going to spend the money on himself and his family.

You probably haven't donated a dime though, so it's totally unreasonable of you to demand a receipt and make all these baseless assumptions.

Overall the whole fundraiser was tasteless, the family picture with wife and small baby and talking about euthanasia...

People are only going to give money to a cause they sympathize with. You think they would give a shit if it was just some old bum with tinnitus living in a retirement home?

 

[Ela Stefan]

You think they would give a shit if it was just some old bum with tinnitus living in a retirement home?

They should! This is the problem. And this should be the message of the tinnitus community; tinnitus doesn't choose who gets afflicted with it. Or there is no point to complain that people don't give money to research.

 

[GPL]

It was a big struggle to get going with the sound generators but I think it is slowly improving. Mine is reactive to all types of fans, frying pans etc.

I think I improved 5-10 dB in a month in tolerance.

David! I am so happy to read of your improvement. Mine has also improved in 2.5 months of using sound generators. I hardly protect in normal settings now. Let's keep up the good work!

Hello David and OnlyUP.

Can you tell me what noise generators you are using and where would I obtain these and what is the procedure please?

I think I would like to give them a try.

Regards,
Keith.

 

[Nick47]

Is this thread going anywhere positive now? The treatment seems to, in reality, not lead to good outcomes. We should focus on treatments for hearing loss and tinnitus currently in clinical trials as this has become a self-fulfilling depressive thread!

 

[OnlyUP]

Can you tell me what noise generators you are using and where would I obtain these and what is the procedure please?

Hi Keith,

I am not sure of the type I have. 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. I also do not shy away from everyday activities. I only use musician's ear plugs when I go to a larger gathering of people with music. I use earmuffs to use the vacuum and the blender. You might read @Coffeebean's post about how he self treated with pink noise in the absence of audiologists who treat tinnitus/hyperacusis in his country.

 

[Ela Stefan]

Hi Keith,

I am not sure of the type I have. 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. I also do not shy away from everyday activities. I only use musician's ear plugs when I go to a larger gathering of people with music. I use earmuffs to use the vacuum and the blender. You might read @Coffeebean's post about how he self treated with pink noise in the absence of audiologists who treat tinnitus/hyperacusis in his country.

What made you decide to try TRT? Did you have a new trauma 3.5 months ago? I see you have had tinnitus since 2011. Or did it get worse?

 

[OnlyUP]

What made you decide to try TRT? Did you have a new trauma 3.5 months ago? I see you have had tinnitus since 2011. Or did it get worse?

I had hyperacusis and an increase in tinnitus appear in January. I spent a couple of months not sure what was going on and then I decided to go with sound therapy and TRT as a way of getting better. I suspect my recent worsening in January was because I started using headphones a lot in the gym, and my toddler screamed directly in my left ear in February which lead to more tinnitus/reactivity.

So far my sound tolerance has improved but my tinnitus is largely the same. One reactive tone I had has mostly gone away, but I still have other weird things going on in the left ear. In addition to sound therapy, I am trying to accept that my tinnitus may remain this way for quite some time in my left ear unless I come to peace with it. I am using the Oto app which is helpful in accepting and moving it to the background rather than hyperfocusing or worrying.

Hope you can find relief, too.