MemberHey King, I was just wondering. If Wilden took the exact same instrument and the exact same "data" - but instead of calling it LLLT, he called it LRFT (Little Red Flashlight Therapy), do you think he'd have much business?
smn
Low-Level Laser Therapy (LLLT) for Tinnitus — Efficacy Debate
- Thread starter Sen
- Start date
Hey King, I was just wondering. If Wilden took the exact same instrument and the exact same "data" - but instead of calling it LLLT, he called it LRFT (Little Red Flashlight Therapy), do you think he'd have much business?
smn
Dear Dr Nagler,
one question - would you change your behaviour if you could get a Lasertherapyfor free? (Just to know if it depends on the money?) I really cannot understand why someone gets a higher blood pressure if someone tells good news??=?????
This doesn ´t make any sense???
one question - would you change your behaviour if you could get a Lasertherapyfor free? (Just to know if it depends on the money?) I really cannot understand why someone gets a higher blood pressure if someone tells good news??=?????
This doesn ´t make any sense???
Member- Aug 14, 2013
- 2,455
- Tinnitus Since
- Resolved since 2016
- Cause of Tinnitus
- Unknown (medication, head injury)
As someone who has deep insights into certain parts of the medical industry, let me explain to you - and others - why certain members will have strong resistance to specific remedies. Members who show resistance fall broadly into two groups:
1) Those who simply don't believe in the specific therapy.
2) Those who do believe in the therapy, but have economic and/or political interests in seeing the therapy's credibility destroyed.
In the case of LLLT, the hearing aid companies are of course eager to dismiss the effectiveness of the therapy. And if you look at the improvements of my audiograms - in my introduction - after 2 months of LLLT therapy, you can easily understand why: I gained 25 db of hearing at 8 kHz...! If I were CEO of a hearing aid company, I would probably also do what I could to try to defend my company's market share (by posting all kinds of negative information and referring to LLLT studies designed-to-fail...).
You only need to look at the CV of some of the members here on this board and/or their affiliation with the medical industry, and then your statement "This doesn't make any sense???" suddenly does make sense...
If that is true, than it's not only hearing aid companies that will try to dismiss LLLT, but also psychiatrists and TRT-providers. And not only LLLT. They would try to work against all research being done to find a cure/treatment. They would be without a job if something actually worked.
I don't want to sound like a crazy conspiracy theorist with a tinfoil hat but this is the reason I don't really trust the ATA. The money you donate to them does not go to research, it just ends up in some psychiatrist's pocket. Don't get me wrong, CBT can do wonders, but it aint no cure.
I find your post to be highly offensive.
In my opinion LLLT is a scam. I have also been highly critical over the years of various medical clinics and medical doctors who rip off tinnitus sufferers with baseless promises. One particular very prominent ENT clinic in the US offering lidocaine middle ear infusions immediately comes to mind.
I have no "affiliation with the medical industry." I have no investments in medical products. I hold no stock in medical companies. I receive no royalties from any of my previous work in the field.
I am a past Chairman of the Board of Directors of the American Tinnitus Association and have devoted thousands of hours to tinnitus advocacy and tinnitus support. All of such efforts on behalf of the tinnitus community have been voluntary. I receive no financial benefit whatsoever. When I am invited to speak to audiology students in seminars at various universities and receive honorariums, I donate them right back to the scholarship programs at those universities.
I am retired. I do see a few tinnitus patients a month from across the globe because I am very very good at what I do, and there is a lot of suffering out there. Any profits are donated to tinnitus research.
The reason - the ONLY reason - I post on this board is to offer a unique perspective - that of a medical doctor who knows what it is to truly suffer from severe intrusive tinnitus.
The mere suggestion that I might have some sort of hidden agenda here disgusts me ... and makes me wonder why the hell I bother.
Stephen Nagler
- Aug 14, 2013
- 2,455
- Tinnitus Since
- Resolved since 2016
- Cause of Tinnitus
- Unknown (medication, head injury)
Absolutely...! Anybody with a business interest would be interested in seeing LLLT fail.
No intention to offend you and I'm sorry if I did. The ATA surely has some good aspects. But when I heard that story about one of the boardmembers of ATA refusing to believe that hyperacusis was "real", that sorta was a dealbreaker for me.
You are suggesting I have some sort of business interest? Read my Post #244 above.
I cannot speak for anybody else here, but I would love to see LLLT succeed. Problem is: It does not work. And all the wishing that it will succeed will not change that fact.
Stephen Nagler
And where did you read that? The Internet, I bet.
Now it's true that at one point around fifteen years ago Dr. Rich Tyler, a clinical researcher who was serving on an ATA committee at the time, was of the opinion that hyperacusis was not a legitimate clinical entity. That's one guy on one committee. And Tyler has since totally changed his opinion on the subject - indeed he has given a series of lectures on hyperacusis and has published articles on the subject. Is that what you call a "dealbreaker."
Stephen Nagler
Of course not.
Because I cannot stand to see tinnitus sufferers scammed.
Stephen Nagler
I did not know that it was 15 years ago. Thanks for clearing that up
But if there was a person in the ATA today who would claim something insane like that, then yes, it would most definitely be a dealbreaker, or at least a big smack in my face as a sufferer.
I did not know that it was 15 years ago. Thanks for clearing that up
A smack in your face? Really? The American Tinnitus Association is a totally voluntary organization (save for its very small staff). Are you saying that out of the hundreds ATA volunteers in various capacities, if a single individual donating his or her time and effort to promoting tinnitus awareness and research through serving on a committee happened to be wrong about hyperacusis, that would be a smack in your face? Do you think everybody has to be right all the time?
Stephen Nagler
Maybe I was using the term dealbreaker wrong, english is not my first language.
No, one person can't represent the whole ATA. But if an expert tells me that my pain isnt real, then yes, that would almost every sufferer consider to be a smack in the face, don't you agree? My trust for ATA would then subconsciously decrease because they would let a person who believes something like that work for them so high up in the chain. Do you understand my reasoning now?
But since this isnt the case anymore, this conversation is only hypothetical and also quite off topic. Anyway, don't wanna argue with ya since I really appreciate you being on this site and all.
No, not really.
If ATA came out with a position paper stating that hyperacusis was not real, then of course I would lose faith in the organization.
But if one volunteer on one ATA committee felt that hyperacusis was not real, then I'd think the guy was a clueless jerk - but I certainly would not lose faith in the organization.
Stephen Nagler
I'm not sure why you insist in continuing to argue with lapidus. His point is entirely valid to me and he just said his first language isn't English, so cut him some slack!
It's not hard to find agreement in what he is trying to say. He said "... work for them so high up in the chain" which clearly isn't referring to some unpaid volunteer nobody heard of. If one of the current staff or board members publicly made asinine comments about hearing loss or tinnitus, it certainly does reflect poorly upon the organization in which he represents. People are fired for that sort of thing all the time -- and rightfully so.-Mike
I'm not arguing with him. He asked me if I understood his reasoning. I don't. You apparently do.
That works for me.
smn
You still don't understand? If a paid ATA staff member came here right now and posted that hyperacusis was not real, you would not understand why that would reflect badly upon the ATA for employing him? Really?
-Mike
@ Dr. Nagler
You are very, very appreciated at this website. I just want to say that and remind of you that. Thank you for everything you do and have done around here, and in the T community generally. I guess sometimes we just get on edge. Again much, much thanks and gratitude for your wisdom and time and effort.
You are very, very appreciated at this website. I just want to say that and remind of you that. Thank you for everything you do and have done around here, and in the T community generally. I guess sometimes we just get on edge. Again much, much thanks and gratitude for your wisdom and time and effort.
If that paid member were speaking on behalf of ATA or was using ATA in his or her sig line, it would reflect badly upon the organization. If that paid member were offering a personal opinion, it wouldn't. That's how I see it, anyway. Perhaps age has made me more flexible in that regard.
More to the point of this thread, I firmly believe that LLLT is a scam - and I have stated why. But I do not think anything less of @attheedgeofscience or anybody else for giving it a try.
smn
Thank you so much for the kind words ... and thank you especially for the timing. I've got to tell you, I was really bristling earlier in the thread at the suggestion that I have some sort of ulterior motive for being here.
And just to set the record straight, I do not want LLLT to fail. LLLT fails on its own lack of merit. What I want has nothing to do with it.
Stephen Nagler
Because researchers can't see any reason why LLLT should work; because the evidence so far doesn't indicate that it works; because they have more promising things to pursue.
In my opinion, the sig line makes no difference. Otherwise you could then argue that LA Clippers owner, Donald Sterling's racist comments made in private didn't reflect badly upon the NBA. It did, they know it did, and as a result they banned and fined him for it.
And unfortunately he now finds this environment too hostile for him to publicly post the results which likely would have supported your opinion on LLLT. Maybe he'll change his mind.
-Mike
I personally do not believe that Sterling's racist comments made in private reflected badly on the NBA. I believe they reflected badly on him. But when they became publicly identified specifically as the rantings of the owner of an NBA team, it became in effect a sig line ... and the NBA acted accordingly.
It's the Internet. People disagree. But as I said before, everybody here will be happy for him if he succeeds, and everybody here will be disappointed for him if he fails. If you think that sort of thing equates to a "hostile environment," you have led a sheltered life as far as tinnitus boards go.
Now I am going to assume that you will want to argue with some of what I have just said and will continue to press your point. Me? I'm done playing tennis with you. If you want to talk about tinnitus, let me know.
smn
KingRoanoke
Member
- May 2, 2014
- 48
- Tinnitus Since
- 2008
- Cause of Tinnitus
- Look at what the dog is wearing.
Being critical of something that has purports to treat suffering people, takes suffering peoples' money, and hasn't proven itself in any objective way - is NOT being hostile. Preserving the integrity of information regarding treatment options is the only thing that is going to keep suffering and hopeless people from bouncing around charlatan to charlatan. If this environment is too hostile, it simply means that people care too much about what really matters to people seeking help. I will not be apart of the crowd that cheers on a myriad of BS treatments while sufferers window-watch tinnitus treatment from hour to hour as their life goes by. Been there. Done that. I'm done!!!
Proving LLLT is helpful over placebo for tinnitus patients is so easy. It's so damn easy. Do you know how many tinnitus research papers came out around 2008 to 2009 when I first got this thing? Dozens and dozens. You think people are just thumbing their nose at this thing for no reason? Gosh.
Right. And if asinine views of a paid ATA member gets posted publicly on popular tinnitus forums, I expect the ATA would also act accordingly.
A sheltered life?? huh? It doesn't matter what *I* think! It matters what he thinks, and HE finds it too hostile to post the results. Those are his words, not mine.
Then just be done, don't make a show of it.
-Mike
I agree with that. If we look back at the first post, someone is asking if people would share their personal experiences with this treatment. That's the topic. Nobody is saying you can't be critical, but if a highly regarded person makes multiple negative posts about it, you aren't going to find many people willing to share their own personal experiences after that.
Personally I would like to see the results posted publicly. It's in all of our best interests, no matter what the results.
-Mike
KingRoanoke
Member
- May 2, 2014
- 48
- Tinnitus Since
- 2008
- Cause of Tinnitus
- Look at what the dog is wearing.
Hi,
I find the discussion about LLLT very interesting and important.
I guess it really depends in which country you live and what kind of therapies are beeing offered.
Example: I'm living in Switzerland. Beside some oral corticoids and Ginko there won't be a lot offered for you. As a treatment you can get a noiser by an audiologist.
ExampleII: If you are located in Germany you have many more things you can try and LLLT is also offered by "normal" ENT clinics...
So why are they offering this, just to take money out of t-sufferers? I also made a phone call to such an ENT clinic and they mean it helps in 7 out of ten.
So are this ENT's liars?
Maybe they are or maybe it's a good placebo.
But as a sufferer it's very difficult.
I believe as long there is no causal effective treatment available, the only way is to check it out if you have time and money.
Time might be the hardest but maybe the only therapy availabe.
I'm still testing on LLLT and will give some updates in some weeks.
At least, the sessions are really relaxing.
I find the discussion about LLLT very interesting and important.
I guess it really depends in which country you live and what kind of therapies are beeing offered.
Example: I'm living in Switzerland. Beside some oral corticoids and Ginko there won't be a lot offered for you. As a treatment you can get a noiser by an audiologist.
ExampleII: If you are located in Germany you have many more things you can try and LLLT is also offered by "normal" ENT clinics...
So why are they offering this, just to take money out of t-sufferers? I also made a phone call to such an ENT clinic and they mean it helps in 7 out of ten.
So are this ENT's liars?
Maybe they are or maybe it's a good placebo.
But as a sufferer it's very difficult.
I believe as long there is no causal effective treatment available, the only way is to check it out if you have time and money.
Time might be the hardest but maybe the only therapy availabe.
I'm still testing on LLLT and will give some updates in some weeks.
At least, the sessions are really relaxing.
I have tried home lasers and they made a spike in my tinnitus and gave me VERTIGO attacks. Vertigo as in one moment I was sitting and the next I felt a zap in my brain and I was down on the floor.
These symptoms NEVER happened to me before in my life ever even after 1.5 years with tinnitus.
Conclusions? - lllt is NOT just a red flashlight, as Dr.Nagler would have you to believe (sorry doc, but you did say that). It is is a medical tool which should be used with caution and preferably under medical supervision.
If you were to shine that powerful laser for 2 hours straight into your ear, you could cause serious internal ear damage (to the cochlea).
That said, it did not work for me in a POSITIVE way. However, I cannot argue that it has NO effect on the inner ear and I can say that for some cases in can potentially have a therapeutic effect without causing, as is termed in medicine - IATROGENIC effects (If you don't know what that word means, Google it).
My tinnitus is very severe by the way, not like most people here, so I think that the laser simply exacerbated my condition-luckily the effects were reversible. It clearly states in the instruction manual to STOP using the laser if you feel serious negative side effects.
Good luck to all.
These symptoms NEVER happened to me before in my life ever even after 1.5 years with tinnitus.
Conclusions? - lllt is NOT just a red flashlight, as Dr.Nagler would have you to believe (sorry doc, but you did say that). It is is a medical tool which should be used with caution and preferably under medical supervision.
If you were to shine that powerful laser for 2 hours straight into your ear, you could cause serious internal ear damage (to the cochlea).
That said, it did not work for me in a POSITIVE way. However, I cannot argue that it has NO effect on the inner ear and I can say that for some cases in can potentially have a therapeutic effect without causing, as is termed in medicine - IATROGENIC effects (If you don't know what that word means, Google it).
My tinnitus is very severe by the way, not like most people here, so I think that the laser simply exacerbated my condition-luckily the effects were reversible. It clearly states in the instruction manual to STOP using the laser if you feel serious negative side effects.
Good luck to all.
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