Why TRT Fails People ...

[bwspot]

I have spoken with one or two, but I do not know enough about either to recommend them unconditionally. They might be absolutely wonderful; I just cannot say one way or the other.

Dr. Stephen Nagler

thx then it seems like there is little people who know the TRT the way you know it?
So probably any TRT that is not "The TRT" would be a failure?
If i spend thousands and then I would find that this was not proper TRT i would not be happy.
I must move to Atlanta or somewhere where I could find trusted TRT if I decide to do it.

 

[Michael2013]

Not taking some of their massive profits to help fund stem cell research or drugs or therapies that attempt cochlear regeneration for hearing recovery in order to cure hearing loss is "inhibiting" progress in a field where helping people with hearing loss is their main premise for revenue.

Hearing aid manufacturers are in the business of making the best aids possible. That's what they do best and that's what they should continue doing. It's the only thing we have today that allows millions of people to get their hearing back and live normal happy lives. This is their place in the market and they should reinvest their own money to get the best result possible in their area of expertise. Period.

At the same time, there should be other organizations on a different track. They should put all their effort into regenerating hair cells or other treatments and cures. You're essentially saying that people should remain deaf(er) until a biological cure is found. Because hearing aids and CI's are so damn good and have helped people so much that there isn't more money being poured into what you find valuable. It's selfish is all it is.

 

[Dr. Nagler]

thx then it seems like there is little people who know the TRT the way you know it?
So probably any TRT that is not "The TRT" would be a failure?
If i spend thousands and then I would find that this was not proper TRT i would not be happy.
I must move to Atlanta or somewhere where I could find trusted TRT if I decide to do it.

Since there is no certification in TRT (one of my concerns listed in the initial post in this thread), it means that you would have to do some due diligence on your own part. You might start by contacting a few TRT clinics and posing the questions I listed in the fourth paragraph from the bottom at https://www.tinnitustalk.com/threads/neuromonics-vs-trt-tinnitus-retraining-therapy.4288/

Or you could consider a different path towards habituation.

Or you could enter one of the clinical trials they talk about on the "Research News" forum.

Or you could do nothing.

But if you are looking for guarantees, my friend, unfortunately you have chosen the wrong affliction.

And by the way, nobody has to "move" anywhere for TRT.

Dr. Stephen Nagler

 

[jss]

It's not flawed at all. You could say the same thing about makers of Beats headphones. If their product (like alcohol) is used irresponsibly, it can cause bodily harm. They should be the ones advocating safe use of headphones. Same thing for concert venues--they should make sure people are aware and protect themselves from the highly damaging music coming from the speakers they sit people directly in front of. That's their responsibility and they are failing miserably at it!

Hearing aid manufacturers don't cause the damage. They aren't the ones responsible for your hearing loss or tinnitus. Now if you can prove that they are actively funding things that _do_ cause hearing loss and they are doing it intentionally to drive up device sales, you would have a leg to stand on.

I agree with you on the headphones and concert venues issue. The Hearing aid manufacturers don't cause the damage BUT they are there to HELP us with the damage and possibly cure it just like some radiation and chemo treatments actually do cure some cancers. The Hearing aid manufacturers have the profits but put the money toward more sales and not a cure which I feel its is partly their responsibility to "help" find that cure. Its my personal opinion that they are not so interested in curing hearing loss, and they should be.

Its like my opinion that The US Government instead of manufacturing one more jet bomber at 500 million they should invest that 500 million into tinnitus research. The costs to compensate veterans for tinnitus is approaching $2 billion annually. Its just shows a general lack of care for human suffering.

 

[Dr. Nagler]

Its like my opinion that The US Government instead of manufacturing one more jet bomber at 500 million they should invest that 500 million into tinnitus research. The costs to compensate veterans for tinnitus is approaching $2 billion annually. Its just shows a general lack of care for human suffering.

I agree. So how many times have you written to your representatives in congress to tell them about the personal, social, and economic impact of tinnitus?

Dr. Stephen Nagler

 

[jss]

I agree. So how many times have you written to your representatives in congress to tell them about the personal, social, and economic impact of tinnitus?

Dr. Stephen Nagler

Thats what the ATA is for we have no voice, and sadly it looks like they have very little influence. Im sure you remember what it felt like before you habituated thats what I feel now. So do a good deed and write the letter for me you are someone they will listen too not me unless you really don't care about the personal, social, and economic impact of tinnitus? ....Thanks

JSS

 

[Michael2013]

I agree with you on the headphones and concert venues issue. The Hearing aid manufacturers don't cause the damage BUT they are there to HELP us with the damage and possibly cure it just like some radiation and chemo treatments actually do cure some cancers. The Hearing aid manufacturers have the profits but put the money toward more sales and not a cure which I feel its is partly their responsibility to "help" find that cure. Its my personal opinion that they are not so interested in curing hearing loss, and they should be.

I suppose we just have to agree to disagree. I don't think it is their responsibility to fund things that essentially would put them out of business. Suppose there is then no cure actually found for 20 years? That means in the meantime hearing aid capabilities remain stagnant and offer little or no improvement because they are reinvesting their money elsewhere.

I would love to see more funding going into the things you are talking about, I just don't think we should expect that from hearing aid manufacturers. And I certainly don't think they are actively preventing progress by NOT funding more. They are funding the things they do best. It should be expected from the people who are causing the damage. I want to see _them_ invest in this stuff.

Its like my opinion that The US Government instead of manufacturing one more jet bomber at 500 million they should invest that 500 million into tinnitus research. The costs to compensate veterans for tinnitus is approaching $2 billion annually. Its just shows a general lack of care for human suffering.

I agree, the US Government can do more here.

-Mike

 

[kmohoruk]

I agree. So how many times have you written to your representatives in congress to tell them about the personal, social, and economic impact of tinnitus?

Dr. Stephen Nagler

I think I may just do that here then, except with us it's our local MPs.

 

[attheedgeofscience]

I agree with Dr Nagler that your entire premise is flawed. In what other industry would you apply this to?!

We expect Budweiser to promote drinking responsibly, not the manufacturers of dialysis machines treating liver disease from alcohol abuse! Your expectation of 'protect your hearing' campaigns should be on the people producing loud damaging noises in the first place.

Let me provide a bit of insight on this particular subject.

Here is what the good doctor on this forum wrote in one of his posts:

They aim a "healing light" into your ear canal with the idea that it is supposed to make sick (or dead) hair cells healthy again. Problem is ... the ear canal has twists and turns, the hair cells are in the cochlea which is located at the other end of the ear canal, and the cochlea is encased in bone. So there's no way that the "healing light" can reach its intended target without burning a hole in your temporal bone!

Now compare that statement with the diagram below - which is cold laser light at 80 mW penetrating approximately 1 cm of bone (my finger):



Disproving what Dr. Nagler said is therefore quite easy.

On page 3 of this 2004 newsletter from the ATA, you will find that Dr. Nagler is listed as part of the scientific advisory board of the ATA (a position he held for 7 years; chairman for 2):

http://www.ata.org/sites/ata.org/files/pdf/September_2004_Tinnitus_Today.pdf

In the same newsletter, you will find that TRT is advocated on page 12. On page 21, you will find the "research" section - and yes, 10 years(!) ago, there was a mention of LLLT's potential effectiveness. Why not explore that possiblity further - wouldn't that be a job for a neutral organzation such as the ATA? Well, not if you are biased to begin with...

And notice the General Hearing Aids ad on page 24 (in a "neutral" newsletter such as the ATA). General Hearing Aids is the company Dr. Nagler later on held a senior position at...

And if you want to see the effect of LLLT, check out the audiograms in my introduction, as well as that of a few other members here on the board.

Here is an article/patent about Flupirtine from 2001/2002 in relation to treating tinnitus - already back then, there were indications that certain potassium modulators might be effective against tinnitus (a precursor to AUT00063):

https://www.google.com/patents/WO2002015907A1?cl=de

That's more than 10 years ago. Why was that never investigated further...?

I don't know where the problem is. But I know that there is a "problem" somewhere...

 

[Dr. Nagler]

Thats what the ATA is for we have no voice, and sadly it looks like they have very little influence. Im sure you remember what it felt like before you habituated thats what I feel now. So do a good deed and write the letter for me you are someone they will listen too not me unless you really don't care about the personal, social, and economic impact of tinnitus? ....Thanks

Instead of complaining that you have no voice, why don't you contact ATA and get on a committee to promote tinnitus advocacy?

Dr. Stephen Nagler

 

[jss]

Instead of complaining that you have no voice, why don't you contact ATA and get on a committee to promote tinnitus advocacy?

Dr. Stephen Nagler

That conflicts with my "TRT" training it just makes me think about my tinnitus more, just like being on this forum does.

Thanks for the kind advise. I still hope you write the letter for me.


Jss

 

[jss]

Instead of complaining that you have no voice, why don't you contact ATA and get on a committee to promote tinnitus advocacy?

Dr. Stephen Nagler

Im interested in standing by a company that is researching new treatments for tinnitus like Auris Medical Holding AG (EARS) I bought some of their stock.

I wish you the best Doctor, lets both hope for better days for tinnitus sufferers.

Jss

 

[Dr. Nagler]

Im interested in standing by a company that is researching new treatments for tinnitus like Auris Medical Holding AG (EARS) I bought some of their stock.

I sincerely hope your investment pays off. If that happens, everybody will benefit.

Dr. Stephen Nagler

 

[attheedgeofscience]

@attheedgeofscience
I would be interested to hear some of your your ideas on how could we all contribute to making tinnitus getting a proper attention of medical community and hopefully finding a cure

I have commented on this particular subject a number of times on the forum - and also in the thread on "Chickenpox and tinnitus..." (I believe you were active yourself in that thread).

In short, I cannot see a point in doing fundraising and raising awareness now when there are already 3 pharmas working on a treatment - and all three of them have their products in the post pre-clinical phase (2 are in phase II, 1 in phase III) ie. the product is already "researched" and developed.

Even if you raise $10M, it will have no effect on the outcome of the clinical trials of the products above (they already have the funding they need). But funding could possibly have made a difference some ten years ago. I believe some specific opportunities were missed both politically and scientifically, and the tinnitus community is now paying the price (in part due to a one-sided focus strategy of the medical community).

 

[jss]

But funding could possibly have made a difference some ten years ago. I believe some specific opportunities were missed both politically and scientifically, and the tinnitus community is now paying the price (in part due to a one-sided focus strategy of the medical community).

I hope more people read this. It was somewhat the basis for my argument yesterday.

Back to my TRT and the maskers I purchased, hopefully my T will be my "friend" soon.

 

[Dr. Nagler]

Back to my TRT and the maskers I purchased, hopefully my T will be my "friend" soon.

TRT does not involve the use of maskers, and the focus of TRT is most definitely not for your tinnitus to become your "friend."

In fact, as I listen to my own tinnitus, the idea that such a loud, noxious, grating sound could ever somehow become my "friend" is both laughable and ludicrous.

So with all due respect, if you are truly interested in TRT, I suggest you find yourself a an experienced and knowledgeable TRT clinician who knows what he hell he or she is doing. Because whatever it is that you are referring to above as "my TRT" ain't TRT at all.

Dr. Stephen Nagler

 

[jss]

TRT does not involve the use of maskers, and the focus of TRT is most definitely not for your tinnitus to become your "friend."

So with all due respect, if you are truly interested in TRT, I suggest you find yourself a an experienced and knowledgeable TRT clinician who knows what he hell he or she is doing. Because whatever it is that you are referring to above as "my TRT" ain't TRT at all.

Dr. Stephen Nagler

Actually Doctor in all honesty I did visit one of the clinics. I was evaluated and sold some maskers to use all day. I feel I was not really helped that much at all. Now I live too far away for follow up visits. So I feel I am on my own.

Thanks
Jss

 

[Dr. Nagler]

Actually Doctor in all honesty I did visit one of the clinics your familiar with ( I don't feel comfortable mentioning them here). I was evaluated and sold some maskers to use all day. I feel I was not really helped that much at all. Now I live too far away for follow up visits. So I feel I am on my own. I wish I could give you a bit more info on my experience but not publicly. Im located in the Southeast US. Do you have any recommendations?

Actually I do. I would call the clinician who sold you the devices and ask him or her if the devices are suitable for TRT. If they are, then given the fact that you have already been evaluated in-person, I would ask the clinician (1) to explain to you how to set them for your particular TRT category and (2) to arrange a schedule for long-distance TRT counseling and follow-up counseling by phone, Skype, or VSee over the next 8-14 months.

And I have one other recommendation. I suggest that instead of blaming industry, ATA, TRT, or whatever for the current sorry state of affairs of tinnitus research, focus instead on what you yourself can do to make things better in your own particular situation.

Dr. Stephen Nagler

 

[jss]

Actually I do. I would call the clinician who sold you the devices and ask him or her if the devices are suitable for TRT. If they are, then given the fact that you have already been evaluated in-person, I would ask the clinician (1) to explain to you how to set them for your particular TRT category and (2) to arrange a schedule for long-distance TRT counseling and follow-up counseling by phone, Skype, or VSee over the next 8-14 months.

And I have one other recommendation. I suggest that instead of blaming industry, ATA, TRT, or whatever for the current sorry state of affairs of tinnitus research, focus instead on what you yourself can do to make things better in your own particular situation.

Dr. Stephen Nagler

Point taken. I will follow through on your recommendations. Thanks for your advise.

Jss

 

[Dr. Nagler]

Point taken. I will follow through on your recommendations. Thanks for your advise.

You are welcome.

Dr. Stephen Nagler

 

[dan]

I want to remind you that Dr.Nagler does not hold an Audiology degree, nor is he an ENT. His area of expertise was oncology and he hasn't practiced medicine sine 1995. Some facts for your general information.

 

[SweetPeach]

I want to remind you that Dr.Nagler does not hold an Audiology degree, nor is he an ENT. His area of expertise was oncology and he hasn't practiced medicine sine 1995. Some facts for your general information.

in short he maybe out of touch with modern medicine. defenitely not a hearing specialist.

 

[dan]

in short he maybe out of touch with modern medicine. defenitely not a hearing specialist.

Exactly what I was trying to say.
Furthermore, it upsets me that Dr.Nagler never gives any practical advice and only refers you back to your clinician. I mean would it be so hard for him to tell JSS how to set his devices? Then he can compare that advice with that of his clinician and make conclusions about the quality of the TRT offered.

 

[jss]

Exactly what I was trying to say.
Furthermore, it upsets me that Dr.Nagler never gives any practical advice and only refers you back to your clinician. I mean would it be so hard for him to tell JSS how to set his devices? Then he can compare that advice with that of his clinician and make conclusions about the quality of the TRT offered.

Actually your info on the Dan's Corner, aka Ask Danik thread is much better and informative than anything my clininition gave me. Thanks to you (dan) I started to read the "Neurophysiological Model of Tinnitus" and have a better understanding.

 

[dan]

Actually your info on the Dan's Corner, aka Ask Danik thread is much better and informative than anything my clininition gave me and they held an AuD

Oh thanks!, so at least my effort was not in vain.