Solsaem Clinic (Dr. Minbo Shim) Experience

[PureNoise]

You're wrong.

I attended the biggest annual tinnitus convention last month, you can read about it here.

My audiologist consultant attends these conferences worldwide and he told me and my family that Lenire will most likely reduce my tinnitus, just that he couldn't provide that treatment to me yet since it's not FDA approved yet. But that if I was willing to travel, it would help my tinnitus significantly from what he has researched and seen in regards to the device.

Hazel's right. These conventions are talking about the cutting edge of tinnitus treatment and research.

 

[JohnAdams]

You're wrong.

I attended the biggest annual tinnitus convention last month, you can read about it here.

Ok, I read that.

You make zero mention of upcoming and ongoing trials with hearing loss drugs like FX-322 and BDNF.

You claim the time frame for a cure keeps moving out further without any explanation.

"I heard many people say: "Ten years ago we were all convinced we'd find the cure in 5-10 years. Now, we understand that that was overly optimistic." So time horizons seems to be ever shifting, to the great frustration of patients. As a result, it's become harder now to pin anyone down to a specific timeframe; researchers have become wary of overpromising and raising expectations they cannot fulfill. Yet, they all seem convinced the cure (or rather cures) will be found in the next few decades or so, and for some groups of patients considerably sooner."

That is so ambiguous and devoid of data. Can we get some "whys" to go along with that diatribe?


"To make matters more complicated, tinnitus is a symptom and not a disease; it can be caused my many different underlying factors or a combination thereof."

Right, but for most of us the cause is noise exposure which causes damage to hair cells and cochlear synapses so there is no good reason not to focus on existing technology that has been proven to regenerate hair cells and cochlear synapses. Is it illegal for you to talk about this stuff? Please explain why you guys aren't promoting this stuff.


"And to further frustrate matters, tinnitus manifests quite differently in different people, in terms of what they hear and how much it bothers them."

I believe certain groups have claimed to be subtyping tinnitus patients including the BTA. Can you educate us on the progress being made to sub type tinnitus sufferers?


"Dr. Susan Shore"

Great, you mentioned her. Why not Frequency Therapeutics?


"Sub-typing is the name of the game"

Is this actually happening? If so, can you point to some research?

The BTA's "Roadmap to a Cure" states that part of their road map is sub-typing.

Have they actually been doing this? Maybe @David can give us an update into their progress with this.


"I heard several tinnitus researchers mention that they were actively discouraged by their mentors from focusing on tinnitus."

These academics need to be named and shamed.


"Something missing from the conference was the presence of investors, e.g. healthcare companies and others who are willing and able to take any new findings and bring them to the market."

Because the investors would have nothing to invest in because none of you are trying to raise money to develop a product based on GSK3 inhibitors, gamma secretase inhibitors, IGF-1, NT-3, BDNF, 7,8 DHF or any other existing compounds that have been shown to restore hearing function in mammals.

 

[Hazel]

You claim the time frame for a cure keeps moving out further without any explanation.

"I heard many people say: "Ten years ago we were all convinced we'd find the cure in 5-10 years. Now, we understand that that was overly optimistic." So time horizons seems to be ever shifting, to the great frustration of patients. As a result, it's become harder now to pin anyone down to a specific timeframe; researchers have become wary of overpromising and raising expectations they cannot fulfill. Yet, they all seem convinced the cure (or rather cures) will be found in the next few decades or so, and for some groups of patients considerably sooner."

That is so ambiguous and devoid of data. Can we get some "whys" to go along with that diatribe?

Diatribe? Excuse me?

I mentioned in my post clearly that we're going to publish much more detailed info on the conference, including video interviews, but I guess you missed that part?

It saddens me you hate my blog post so much. But could you have done a better job? At least I went there and tried to get a handle on what's going on, and to inform the community about it.

"Dr. Susan Shore"

Great, you mentioned her. Why not Frequency Therapeutics?

Simple: They weren't there and Susan Shore was. I would have loved to talk to them. We've reached out several times in fact, but they won't respond. What do you expect us to do?

"Sub-typing is the name of the game"

Is this actually happening? If so, can you point to some research?

Yes it is happening. As I said before, more detailed info will follow soon. It's just me reporting on this, and I'm doing this in my spare time while dealing with a sick mom, so cut me some slack, will you? Come to think of it, why don't you look into it yourself? Do you expect us to do all the work for you?

Have they actually been doing this? Maybe @David can give us an update into their progress with this.

I don't think it's up to the BTA to be sub-typing, they're not researchers. The best they can do is try to push research into this direction. But that takes a lot of time and effort, something you don't seem to appreciate.

Please explain why you guys aren't promoting this stuff.

Because, as we've told you ad nauseum, we don't have magic powers. We're a small group of volunteers with near zero budget. One thing we do have is a podcast; we offered you this platform, and you declined, I seriously don't know what else you expect us to do? I feel like a broken record here...

What you don't seem to understand is that my blog post was meant as a general summary of the field. It's not fair to then come back with "why don't you talk about the details of x, y, z?"

The only reason I refered to my blog post was in response to your comment about these conventions being a "habituation fest." I think my post and my personal experience proves this is not the case. Then you go and bring up a million other unrelated things and pick apart my post.

I don't see you putting in any effort to understand what's going on in research. My analysis may not be perfect, but at least I'm trying to do something for the community. I'm so tired of being attacked by you, seriously.

none of you are trying to raise money

"None of you"? You're awfully good at attacking others who are supposedly not doing enough, but I haven't seen much initiative from you either.

 

[PureNoise]

A cure is also very far off. This is a permanent change in the brain. There are upcoming treatments to reduce tinnitus severity/loudness but the neurological changes in the brain are very hard to permanently fix.

Even when a patient is 'cured' and their tinnitus is no longer audible, the brain connections that cause tinnitus to be audible are still present and IMO loud noise exposures without protection can bring tinnitus back much easier than a person who never experienced tinnitus before.

Loud noise exposure reinforces the hyperactive fusiform cells and makes the tinnitus louder.

 

[just1morething]

Mine's too skinny. There's nothing to see or be impressed over.

Maybe you had a skinny ass with horrible gas? Just kidding of course.

 

[Daniel Lion]

My audiologist consultant attends these conferences worldwide and he told me and my family that Lenire will most likely reduce my tinnitus, just that he couldn't provide that treatment to me yet since it's not FDA approved yet. But that if I was willing to travel, it would help my tinnitus significantly from what he has researched and seen in regards to the device.

Hazel's right. These conventions are talking about the cutting edge of tinnitus treatment and research.

Cutting edge has to include hearing regeneration. If it doesn't include the likes of FX-322 and other regenerative modalities, then i would disagree on the term cutting edge. I do happily accept and am very thankful for neuromodulation and its attempt to quiet the brains misfirings as being cutting edge.

The big hope for those with hearing loss are regenerative therapies. In six to ten years the latter statement will be accepted and adopted as the status quo... I hope.

JohnAdams has a background and degrees in the sciences, and knows a lot more about molecular biology than most people on the forum and organizations advocating for tinnitus sufferers. I think his frustration comes from his overall vision just being a bit ahead of the times... I hope that's the case.

Having said that, JohnAdams, give Hazel and the other organizers a break... They are working for free, for us... thank you Tinnitus Talk staff.

Hazel is a sufferer too, is working her ass off, has a sick mom, and is obviously stressed. Ease up... for her sake and so that your ideas you're advocating can be heard.

JohnAdams, take your time and put your ideas to paper of possible alternative paths and methodologies that you think tinnitus organizations should adopt.

Post and submit, this will help everyone. It's clear that regenerative medicine needs to be embraced and medical cures for our condition advocated. This is evident to me and clearly others who are praying everyday for hearing regeneration therapies.

Hazel you are amazing, thank you for your hard work.

JohnAdams you are also amazing and an asset to this community, thank you.

I think it's time to work together.

I doubt JohnAdams that you ever envisioned having tinnitus or being an advocate, but life is full of surprises, some we obviously wish we never had...

My three cents.

 

[Telis]

Direct attacks against Minbo Shim and indirect attacks against me. TBH I'm kinda tired of the fighting, but when people make these attacks I feel compelled to fight back. Then it makes me look bad because I bite back.

I think people are attacking the idea, not you.

 

[Flamingo1]

Dude that is China. South Koreans have a very western influenced palate. But yes, some South Koreans are definitely eating bugs.

Dogs too. That's not very Western.

 

[JohnAdams]

JohnAdams, take your time and put your ideas to paper of possible alternative paths and methodologies that you think tinnitus organizations should adopt.

I'm going to. I'm going to get my hearing checked soon as well.

 

[JohnAdams]

@GlennAz, when are you planning on getting your hearing checked? I'm going to try and get an appointment within the week.

 

[GlennAz]

@GlennAz, when are you planning on getting your hearing checked?

Well, I finished treatment April 14th. Three months after would be July 14th, at my regular audiologist. I should probably plan to make an appointment soon. Appointments are usually some time out there to see her.

 

[Starthrower]

It saddens me you hate my blog post so much. But could you have done a better job? At least I went there and tried to get a handle on what's going on, and to inform the community about it.

Screw what was said @Hazel. What you did was beyond expectations and on your own time and money.

Having said that, JohnAdams, give Hazel and the other organizers a break... They are working for free, for us... thank you Tinnitus Talk staff.

Hazel is a sufferer too, is working her ass off, has a sick mom, and is obviously stressed. Ease up... for her sake and so that your ideas you're advocating can be heard.

I don't see you putting in any effort to understand what's going on in research. My analysis may not be perfect, but at least I'm trying to do something for the community. I'm so tired of being attacked by you, seriously.

I agree @Hazel anyone who is so demeaning in nature should not be allowed to post here.

 

[Hazel]

Having said that, JohnAdams, give Hazel and the other organizers a break... They are working for free, for us... thank you Tinnitus Talk staff.

Hazel is a sufferer too, is working her ass off, has a sick mom, and is obviously stressed. Ease up... for her sake and so that your ideas you're advocating can be heard.

Thanks, I really appreciate the support. Things have been a bit stressful for me lately. I had to take my mom to the emergency room yesterday and that may have had some bearing on my response from yesterday.

But yeah, I still feel like it's unfair when people expect us to do all kinds of things on their behalf without getting paid for it. We need this community to coordinate itself, donate where they see fit, join our projects as volunteers, etc.

Tinnitus Hub has only a few channels/means through which we can affect change in the real world; those are our podcasts and videos. So if anyone expects us to put the word out there regarding hearing regeneration, they will have to help us create podcasts or videos about it. This is something I've mentioned several times to our friend John, to no avail.

Nonetheless, even without his support, we managed to record a podcast with a stem cell researcher who focuses on hearing regeneration, to be released soon! I hope this shows that we are taking this topic very seriously and trying to promote it. But John just seems to expect miracles from us.

JohnAdams, take your time and put your ideas to paper of possible alternative paths and methodologies that you think tinnitus organizations should adopt.

I agree. Scouring the internet to learn about research, and then typing long posts about it on a forum is never going to reach a wide audience. To do that, we need a very concise, catchy, well-written and appealing pamphlet, which is easy to understand for lay audience, with nice graphics, and very clear call to action (e.g. "donate here" or "sign up to xxx"). This requires a lot of planning, thinking, networking, writing and rewriting. Ideally there would be a video too. So all in all it's a lot of work. We simply don't have the time at the moment, but if someone out there is willing to put in some serious time and effort, we're willing to do the final editing, publication and distribution.

Hazel you are amazing, thank you for your hard work.

JohnAdams you are also amazing and an asset to this community, thank you.

I think it's time to work together.

Thanks again for your understanding and support. Yes, you are very right of course.

Anyone reading this who feels strongly about the cause of hearing regeneration, please take note of my comments above. If you are willing to dedicate some serious time and effort to this cause, let us know and we are 100% behind any community efforts.

Just don't underestimate the time and effort such a project would take, as well as budget required, which we don't currently have. We do this kind of stuff every day on a volunteer basis, so we know what's involved in even the seemingly most simple public outreach/awareness projects. To get this off the ground, we would need a group of committed, highly skilled, well-coordinated volunteers to get behind this.

 

[JohnAdams]

we need a very concise, catchy, well-written and appealing pamphlet, which is easy to understand for lay audience, with nice graphics, and very clear call to action (e.g. "donate here" or "sign up to xxx").

I will do that.

 

[just1morething]

Those nurses have seen my butt many times. Glenn's too.

Maybe bare your audiogram instead of your butt for us? Glenn should wait till July sometime.

 

[JohnAdams]

Maybe bare your audiogram instead of your butt for us? Glenn should wait till July sometime.

I actually called an ENT today, twice, and got no answer. I'll try another one tomorrow.

 

[Liam_Cairns]

A cure is also very far off. This is a permanent change in the brain. There are upcoming treatments to reduce tinnitus severity/loudness but the neurological changes in the brain are very hard to permanently fix.

Even when a patient is 'cured' and their tinnitus is no longer audible, the brain connections that cause tinnitus to be audible are still present and IMO loud noise exposures without protection can bring tinnitus back much easier than a person who never experienced tinnitus before.

Loud noise exposure reinforces the hyperactive fusiform cells and makes the tinnitus louder.

Do you have any research to support?

 

[Flamingo1]

I actually called an ENT today, twice, and got no answer. I'll try another one tomorrow.

Why not just go to an audiologist?

 

[another sean]

we need a very concise, catchy, well-written and appealing pamphlet, which is easy to understand for lay audience, with nice graphics, and very clear call to action (e.g. "donate here" or "sign up to xxx").

I will do that.

Looks like a cease fire to me guys, Yass! Everyone stand down.

Our work is done here.

 

[GlennAz]

Orthokine has been mentioned in this thread and FX-322, also. I'm not up on this stuff, it's new to me, so I wanted to know what Dr. Shim thought. So I asked him. Dr. Shim sounded a lot like what John had said. Here's what Dr Shim said:

"Orthokine seems to be similar with my method but there are some differences as well. We don't apply any heat. Heating the serum can make it degenerated. So it wouldn't be suitable for the treatment of hearing.

FX-322 is still on the clinical trial and they are intentionally keeping its chemical component undisclosed, which means there is no way to check its credibility".

That's Dr. Shim's thoughts. I don't think he minds my quoting him. I have very high regard for what he has to say.

So, I personally, wouldn't get my hopes up for Orthokine.
Maybe FX-322 is kept quiet because they're afraid someone could steal their work, assuming FX-322 works?

 

[Phendran]

Maybe FX-322 is kept quiet because they're afraid someone could steal their work, assuming FX-322 works?

We hope this is the case.

If they're keeping their secret ingredient secret simply because it's something that doesn't actually work, they likely won't take the world with storm as would otherwise be expected.

 

[Lucifer]

We hope this is the case.

If they're keeping their secret ingredient secret simply because it's something that doesn't actually work, they likely won't take the world with storm as would otherwise be expected.

Didn't @JohnAdams state in his earlier posts that he knows what's in it?

 

[Bndsmheowqhe]

Didn't @JohnAdams state in his earlier posts that he knows what's in it?

 

[Artemis2K]

I actually called an ENT today, twice, and got no answer. I'll try another one tomorrow.

Try Costco if you have a membership.

Also, you can get free audiograms from Belltone. However, I would consider this as a last resort, as my experience with them was weird. My ENT's audiologist and Costco's audiograms basically matched at the "slight" hearing loss range. However, the one at Belltone showed a 5 dB average loss both times I used them. It was so weird.

 

[GlennAz]

Costco will do it free.

I had Costco do an audiogram about three months before going to Gangbuk gu.
The guy was good at doing audiograms. He's wasn't an AuD.
He concurred I was ready for a cochlear implant.
His audiogram was about the same as everyone else's.

Their hearing aids were $2700 for a set of high quality, with all the bells and whistles in them.
My audiologist was $6900 for the same.

 

[Chinmoku]

Orthokine has been mentioned in this thread and FX-322, also. I'm not up on this stuff, it's new to me, so I wanted to know what Dr. Shim thought. So I asked him. Dr. Shim sounded a lot like what John had said. Here's what Dr Shim said:

"Orthokine seems to be similar with my method but there are some differences as well. We don't apply any heat. Heating the serum can make it degenerated. So it wouldn't be suitable for the treatment of hearing.

FX-322 is still on the clinical trial and they are intentionally keeping its chemical component undisclosed, which means there is no way to check its credibility".

That's Dr. Shim's thoughts. I don't think he minds my quoting him. I have very high regard for what he has to say.

So, I personally, wouldn't get my hopes up for Orthokine.
Maybe FX-322 is kept quiet because they're afraid someone could steal their work, assuming FX-322 works?

Thanks for reporting this, @GlennAz. Sorry if this has been mentioned earlier and I missed it, but does Dr. Shim have any view on the other main regenerative medicine project, Regain?

https://www.regainyourhearing.eu/

 

[JohnAdams]

Thanks for reporting this, @GlennAz. Sorry if this has been mentioned earlier and I missed it, but does Dr. Shim have any view on the other main regenerative medicine project, Regain?

https://www.regainyourhearing.eu/

I've talked to him about FX-322 and he has been studying info about it.

I think that the main tech behind FX-322 and what Regain is using is the same, gamma secretase inhibitors.

I know that there is a patent.

 

[GlennAz]

but does Dr. Shim have any view on the other main regenerative medicine project, Regain?

I couldn't tell you.
John Adams would be the one to ask.

 

[Chinmoku]

I couldn't tell you.
John Adams would be the one to ask.

Thanks, John replied immediately.

I've talked to him about FX-322 and he has been studying info about it.

I think that the main tech behind FX-322 and what Regain is using is the same, gamma secretase inhibitors.

I know that there is a patent.

Very interesting. I'll look that up. In the meantime a quick search found this
https://www.uclh.nhs.uk/News/Pages/Newdrugcouldrestorehearinginthedeaf.aspx

"[...] Hair cell loss has long been thought to be irreversible, but various earlier studies in animals indicate that functioning inner ear sensory hair cells may be regenerated through the use of a small molecule substance called a gamma-secretase inhibitor.

And now, researchers at UCLH's Royal National Throat Nose and Ear Hospital (RNTNEH) and UCL Ear Institute are leading a trial – being undertaken by the REGAIN (Regeneration of inner ear hair cells with gamma-secretase inhibitors) consortium made up of partners in the Netherlands, UK, Greece, Germany and Denmark – to test a drug in patients with hearing loss based on these studies."

I guess this had been posted earlier, very interesting.

 

[GlennAz]

I know that there is a patent.

Does a patent mean Dr. Shim couldn't pick up a bottle of it and inject it into your ears?