Dr. Jastreboff on the Reasons for Failure in TRT ...

Hi All -

I thought I'd point you to an interesting question from @Lisa88 (and response from Dr. Jastreboff) that I just posted on the Doctors' Forum ...

https://www.tinnitustalk.com/threads/quick-trt-question.6368/

Dr. Stephen Nagler

 

great post , it just tells me to back off and leave this forum for now

 

If you're a TRT patient of Dr. Jastreboff's then that's definitely what you should do. If you were a TRT patient of mine, then moderation is the key. In fact spending too much time on the boards probably isn't good for anybody. But the support and information that can be gleaned by visiting in moderation may be of considerable value, as I see it.

Dr. Stephen Nagler

 

Thanks to you @Dr. Nagler and Dr. J. for sharing this information.

 

Firstly,
You quoted Dr.Jastreboff as saying :
"The first is involvement in medical-legal action, including disability claims. It's not a question of malingering or anything like that. It's the fact that folks so involved have to fill out forms every month explaining just how miserable they are and how their tinnitus is adversely affecting their lives."

Well guess what , his first and foremost explanation is totally false, because folks on disability DO NOT NEED TO FILL OUT FORMS EVERY MONTH - 1x every 2 years or so, at most.
I know some people on disability for various conditions (including tinnitus) and that is simply not the case. Sure there are initial paperwork to fill out, but once its done, its smooth sailing.
Just another "blame the victim" attitude - seeing as Dr.Jastreboff treats people with severe tinnitus, a lot of his patients would be on disability or applying for it.

Secondly,
The TRT studies ONLY include the failure rate of the 15% of candidates who actually finished the whole 18 month trial, they do not take into account all the candidates who drop out for any reason during the course of the actual trial. Those dropouts probably drop out due to reasons suchs as - WORSENING TINNITUS, or annoyance from the noise generators, etc.
Had these people followed thru until the end of the trial, who knows, there might be a much lower success rate - maybe a 50% success.

And as for the Tinnitus Skype Chat, there was absolutely nothing toxic about it.
Craig dropped by for only 10 minutes and that only once a month or so at a time to update on his treatments/therapy.
We were all very supportive and understanding and if Craig felt the TRT wasn't working for him, it was HIM who told us that first, not the other way around. We just went along with what he was saying, but all of us urged Craig to consult Dr.Jastreboff for instructions.

 

This is somewhat dishonest.

1. Jason Diemilio was a TRT patient with Jastreboff as well, so that makes at least two.

2. You could not have produced a two page transcript of the chat for Jastreboff because such a transcript doesn't exist. The sections that a member of our chat posted on yuku were barely 100 words worth of chat, not even close to two pages. Not only that but they were extremely vague and taken well out of context, I don't see how any reasonable person could deduce that Craig "didn't stand a chance" from so little information about our chat and Craig's fleeting involvement with it.

Craig stopped by the chat very seldomly, in fact. When we heard the news of his death, he hadn't been around since early in the summer. He was much more active about his issues on his own facebook and a facebook tinnitus support group that almost none of us are a part off.

 

Matt, nobody is being dishonest. I suspect that Dr. Jastreboff didn't know about this particular individual's demise. He is very close to his patients, but he can't know everything.

The transcript I gave Dr. Jastreboff in 12-point Times New Roman was just shy of two pages long.

Those were Dr. Jastreboff's exact words upon reading through the transcript.

Dr. Jastreboff feels that all that stuff - being a flag-waver and being among flag-wavers is unhealthy. And it seems that your friend was quite active in that regard. Whether is was on one chat or on ten is really irrelevant. Dr. Jastreboff instructs every patient of his to stay away from Internet tinnitus sites while they are doing TRT. Your friend didn't listen. Would it have made a difference? Of course nobody can say for sure. Dr. Jastreboff's "didn't stand a chance" comment came from a place of emotion and despair. He and your friend had exchanged well over fifty e-mails in the three months prior to his tragic death.

The question @Lisa88 raised had to do with the factors that decreased the probability of success in TRT. I figured that Dr. Jastreboff would be the best source for that information, I asked him at lunch today, and I posted what he said.

Dr. Stephen Nagler

 

I really don't care if he sees it or not. I care what the rest of the real world thinks.

 

@dan
My heart has been so sad since Craig's passing. Think it has effected us all so deeply. Hugs to you, his friends and family.

 

Thank you Lisa, that's very kind of you.
I think the world needs to wake up and I think its happening slowly now (all the research that's popping up) but it could have been much faster. Its sad that in 2014 we dont have treatments to lessen tinnitus.

 

TRT has put a damper on a real search for a cure. Its a convenient way for Audiologists, to make money on tinnitus but its FAR from a real solution. You can get certified on TRT in a weekend. The cost of maskers or even neuromonics is nothing short of criminal.

And then they tell you to avoid these forums just in case someone calls them out on it for what it really is......not a cure, just a money making machine.

 

Thank you for this post. I totally agree.

 

The problem with the search for the cure isn't TRT. The problem with the search for the cure is that nobody but us and a handful of researchers gives a rat's ass about tinnitus. It is simply not sexy enough to draw the really big dollars.

Dr. Stephen Nagler

 

Besides TRT I also blame the industry which specialises in selling solutions related to hearing in specific, e.g. noise amplification devices (hearing aids), cochlear implants are some of the biggest beneficiaries right now.
Do you think these cooperations are playing an active role in inhibiting the progress and advances in the field? hair cell regeneration in the cochlear? In an effort to maintain profits etc.........................Yes I do.

Just a few ads warning the dangers of exposure to loud sound could be very "sexy" with the right campaign. They are more interested in hearing damage than hearing protection.....follow the money trail.

 

Absolutely not.

Dr. Stephen Nagler

 

I disagree,

That industry generates billions of dollars a year in revenues and those companies will fight very hard to maintain their profits, and have huge resources to call upon in that struggle. Check out where university funding into hearing loss-related research comes from and you will see that much of it comes from the noise amplification companies - it would be a brave research department head that embarked upon research or published results which displeased the people paying his salary. I have read that the US government handed out a big cheque to another hearing aid company (Neuromonics) to 'cure' the hearing-damaged veterans coming back from Iraq and Afghanistan by giving them glorified MP3 players which make noises like early 1980's arcade games and cost several thousand dollars each! I wonder how that deal got brokered?

I additionally suspect that 'Big Pharma' is also not too keen on the public realising what a problem hearing loss is as so many 'over the counter' medicines (eg. Asprin, Paracetamol, Codeine, Ibuprofen), let alone prescribed medicines appear to have ototoxic effects - the 'legal' term for 'may totally ruin your hearing' appears to be 'may cause dizziness or vertigo', hidden in small letters somewhere in the folded-up leaflet hidden in the box the tablets came in. Again profits would take a huge hit if people realized the side effects of the headache tablet they were about to buy, or discussed possible side effects of prescribed medicine with their GP, and whether the antibiotic they were being offered was really necessary or did taking it just mean they could maybe be back at work a day or two earlier...

When I was at school in the 1980's we were forever being told to brush our teeth (even being given free toothbrushes and toothpaste on occasion, kindly donated by pharmaceutical companies), warned about the dangers of fireworks, advised about protecting our eyes, being safe near traffic, not smoking, drinking or taking drugs, practicing safe sex etc etc but I never heard one word about protecting our hearing. Former US presidents (Clinton & Reagan), A-list actors, famous TV presenters/anchors, rock stars, journalists (particularly music journalists) suffer from tinnitus and hearing loss but we still almost never hear anything about the dangers of noise. I consider myself reasonably well informed. but the first time I realized that hearing loss meant *more* and not less noise in my ears, and I heard the term 'ototoxicity' was after I came down with tinnitus myself over a year ago. Something very strange there........

 

TRT will (eventually) suffer the same fate that KODAK did when digital photography became the norm. Their mistake? Not realizing in time that new technology was making an introduction, as well as clinging on to old philosophies...

Of course it is...

http://biotuesdays.com/2014/08/31/leerink-starts-auris-medical-at-outperform/

 

OK.

If you want to believe that there's some kind of conspiracy focused on inhibiting research towards finding a cure for tinnitus, be my guest.

Best to ya -

Dr. Stephen Nagler

 

Its not a conspiracy its just business as usual


The following example is quite well known but unfortunately there are plenty of other examples of special interests doing precisely that:
http://en.wikipedia.org/wiki/Phoebus_cartel


By the way, there may be a few lessons from the past here:
Pharmaceutical industry:
http://www.theguardian.com/society/2012/sep/01/thalidomide-cover-up

From another industry:
http://auto.howstuffworks.com/1971-1980-ford-pinto12.htm
Quote:
Experts calculated the value of a human life at around $200,000, while a serious burn injury was worth about $67,000. Using an estimate of 180 deaths and 180 serious burns, someone put on paper that the cost to redesign and rework the Pinto's gas tank would cost close to $137 million, while possible liability costs worked out to around $49 million.
snip
"Clamming up is what we did at Ford in the late '70s when we were bombarded with suits over the Pinto, which was involved in a lot of gas tank fires. The suits might have bankrupted the company, so we kept our mouths shut for fear of saying anything that just one jury might have construed as an admission of guilt. Winning in court was our top priority; nothing else mattered. And of course, our silence added to all the suspicions people had about us and the car."

 

Jastreboff knew about Jason. His family contacted him after Jason died.

It may be just me, but saying that a guy who killed himself "didn't stand a chance" based on the fact that he used internet support boards sounds really, really weird, especially when you consider how unlikely it is that Craig is the only TRT patient who went against the "avoid support boards" mantra.

Here is the "2 page" transcript Dr. Nagler is referring to if anybody is curious:

[1/1/14 7:53:31 PM] craig: has anyone tried Laser Therapy
[1/1/14 7:59:06 PM] D: yes
[1/1/14 7:59:33 PM] D: why? aren't u doing TRT with Jastreboff ?
[1/1/14 8:00:00 PM] craig: yes. I just am not doing any better
[1/1/14 8:00:17 PM] D: sorry to hear that
[1/1/14 8:00:18 PM] craig: I have major pain with my T now
[1/1/14 8:00:24 PM] D: ear pain ?
[1/1/14 8:00:45 PM] craig: it feels like jabbing through the ear into the brain
[1/1/14 8:00:51 PM] D: wow
[1/1/14 8:00:59 PM] D: i think u should stop TRT
[1/1/14 8:01:08 PM] D: what did Jastreboff say about this?
[1/1/14 8:01:37 PM] craig: he said it is caused by my depression. he said i got to get it under control
[1/1/14 8:01:55 PM] D: im sorry but that is ridiculous

[1/7/14 6:54:12 PM] M: how is your treatment with jastreboff going?
[1/7/14 6:54:23 PM] craig: not good
[1/7/14 6:55:25 PM] M: what does he have to say?
[1/7/14 6:55:57 PM] craig: im just not getting better
[1/7/14 6:56:26 PM] M: have you talked to him about it?
[1/7/14 6:56:47 PM] craig: yea i do talk to him about it
[1/7/14 6:57:14 PM] craig: he says my deepressio has to get better
[1/7/14 6:57:58 PM] M: what keeps getting worse?
[1/7/14 6:58:03 PM] M: the T or the depression?
[1/7/14 6:58:59 PM] craig: both and i have a lot of ear and brain pain
[1/7/14 6:59:24 PM] craig: i can not focus on anything
[1/7/14 6:59:33 PM] M: oh really you have pain?
[1/7/14 6:59:34 PM] M: that sucks
[1/7/14 7:00:16 PM] M: what does Dr. J say about the pain?
[1/7/14 7:00:52 PM] craig: he says if my depression gets better the pain will get better
[1/7/14 7:01:04 PM] M: im not so sure about that lol
[1/7/14 7:01:06 PM] craig: i just dont know
[1/7/14 7:14:59 PM] N: is it possible the noise generators gave you ear pain?
[1/7/14 7:15:25 PM] craig: yea i thank the generators do not help
[1/7/14 7:15:35 PM] N: can you describe the ear pain?
[1/7/14 7:16:16 PM] craig: burning from my left ear into my brain. kind of sizzling
[1/7/14 7:16:38 PM] craig: like frying an egg with my brain
[1/7/14 7:22:24 PM] N: did you ask jastreboff if the noise generators could be making you worse?
[1/7/14 7:22:40 PM] craig: he says depression
[1/7/14 7:23:11 PM] craig: he says i can not habituate with the depression that i have
[1/7/14 7:23:19 PM] N: what do you think about his statement?
[1/7/14 7:24:04 PM] craig: i dont know. i know a couple of people around here that went to him and they are fine now and they tell me the same thing
[1/7/14 7:24:39 PM] N: also, is jast talking about habituation to tinnitus or to the pain you get from noise? if your depression goes away you can habituate to tinnitus, or if your depression goes away you will be out of pain? Which is he saying?
[1/7/14 7:25:40 PM] craig: if the depression goes away the pain will go also and i will be able to habituate
[1/7/14 7:26:19 PM] N: i think this condition is so individual that it is hard to make a blanket statement that is true for everyone.
[1/7/14 7:26:32 PM] craig: yea me too

 

As I posted earlier ...

"Dr. Jastreboff's "didn't stand a chance" comment came from a place of emotion and despair. He and your friend had exchanged well over fifty e-mails in the three months prior to his tragic death."

..............

What in the world is "really, really weird" about emotion and despair?

I am leaving this thread.

Dr. Stephen Nagler

 

trt first rule of business: you will be murdered if you go to forums to tell about your failed treatment

 

That is not true. You can go to forums and talk all you want about your failed treatment. What you cannot do is go to forums during your treatment. And the more I think about it, the more I am in agreement with Dr. Jastreboff in that regard.

Dr. Stephen Nagler

 

@Dr Nagler,
you are highly educated man and I'm in disbelief that you either can't or don't want to understand what these people are saying.

TRT, CBT, Neuromonics.....is soooooo yestrday!

Dr Nagler we need your help to start pushing things forward, we are still stuck in the same mud as from the times of Van Gogh and Beethoven.

People SUFER! We need relief not habituation therapies!

I said it once and will say it again, the person of your reputation and influence could do so so much more, donating to ATA is a waste of your money, the cure is not coming from there, please help us being heard!

Let's all together come up with something smart that will rise the awareness and the urgency of the situation.

 

I think I have said this before on here......I know people that are suffering in pain from other aliments but you rarely hear them talk about wanting to kill themselves. The fact is that the general public had no idea what goes on with someone with tinnitus and how it affects peoples minds. Basically brain damage if you ask me. The public needs to be made aware that people kill themselves over this. As far as the ATA, I looked at some old mailers they used to send out in the 80's before there was the internet and they were saying basically the same stuff then as they are saying today. And I hate the fancy word "habituation" which basically means getting used to it. And the reason that TRT is recommended is simply because there is nothing else (and I am not saying that it even works). And depression....people with tinnitus get depressed because they have tinnitus. I don't buy that depression gives you tinnitus.

 

@valeri , I will make the call and say you are wasting your time appealing to Dr Nagler to run away from his cash cow, he is just too far in for that!
Very unfortunate, he could, if he choosers, be a leading light in our cause.

pity!
Rich

 

@RichL

Let's see if you will be proven wrong

 

Nothing I'd love more @valeri

 

@RichL

Now we sit and wait

 

@Dr. Nagler , are any video transcripts of your lectures that you give on tinnitus/trt, available on the internet?