Excellent. So when you succeed - instead of holding your hand, I'll shake your hand!Thanks for the re-assurance. When this is a success, we will celebrate!!! My treat!!!
Sounds like a plan.
Now go get better.
Excellent. So when you succeed - instead of holding your hand, I'll shake your hand!Thanks for the re-assurance. When this is a success, we will celebrate!!! My treat!!!
@Dr. Nagler
I Tried TRT it didn't work on me. It was as a nightmare for me .I lost a lot of dollars to make my T louder.
Now I am plannig to do HIFU .(but I have to win a lof of money)
Problem is ... we don't even know if the clinician knew anything about TRT at all! That's what is so bad about the lack of credentialing and standardization in TRT. Any licensed healthcare provider can call himself or herself a TRT clinician. No need to even know the first thing about the neurophysiological model. Hell, you don't even need to know how to interpret an audiogram!Would it be possible for you to pinpoint just what the TRT-clinician did that you believe made your T worse?
Problem is ... we don't even know if the clinician knew anything about TRT at all! That's what is so bad about the lack of credentialing and standardization in TRT. Any licensed healthcare provider can call himself or herself a TRT clinician. No need to even know the first thing about the neurophysiological model. Hell, you don't even need to know how to interpret an audiogram!
No way to tell for sure but as Dr. N stated I wasn't willing to wait to prove an experiment.
I had a good experience and it opened a door that I walked through.
@preslys I wish you the very best in your HIFU treatment.
Take care all.
R
No, Vincent. I really don't.Do you have any theory about what the self prescribed TRT-clinician did that could possibly have made @preslys T worse?
Yes. He did TRT with Jacqui Sheldrake in London - one of the very best TRT clinicians anywhere.rcp1, Did you do TRT therapy?
Well, I sure think so. And you can bet so does @RCP1!Wonderful!!
No, Vincent. I really don't.
I suspect it would have to do with some aspect of the sound therapy component of the protocol. Maybe inappropriate devices, inappropriate settings, inappropriate instructions, an error in categorization, stochastic resonance, failure to recognize six-week syndrome, the list goes on and on.
But since we're on the subject, I'll tell you this. I have taken a lot of shit on this board for recommending only a handful a handful of individuals when I am asked for suggestions regarding whom to see for TRT.
But I am simply unwilling to give out a name unless it is somebody I can personally vouch for - because there's a lot of stuff that can go wrong. Please understand this, however.
Even when TRT is not correctly applied, it is extremely rare that the patient's tinnitus will actually get worse. More often the patient will just not succeed and consequently blame it on TRT instead of blaming it on the fact that he or she was mislead by an inexperienced (or sometimes unethical) clinician. But one way or another, when something goes wrong with TRT (if it even is TRT), you can bet somebody on a message board will post about it.
Well, I sure think so. And you can bet so does @RCP1!
Let me point you to a nice story about Jacqui Sheldrake ... and about Gail Brenner, the lady you yourself will be meeting at the end of this month.
As you may recall, three or four months ago I went through a rough patch with my own tinnitus, which had been stable for some twenty years. Actually, calling it a rough patch was putting it mildly. I felt like the entire floor had given way. If you read the story regarding what happened [Click Here], you will see just the kind of genuinely caring people Jacqui and Gail are!
Hey, here's a photo taken at Niagara Falls in 2011. Left to right are Myriam Westcott (terrific audiologist from Melbourne, Australia), Gail Brenner, moi, Jacqui Sheldrake, and Jacqui's husband Tony. We were all attending a tinnitus conference in nearby Grand Island - and we took a break to visit the Falls!
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It doesn't seem to me that you TRT-guys are reckless in this regard. But maybe that's what selfprescribed TRT-clinicians been doing wrong, and maybe that's what potential clients should look out for?
Leah, everything about tinnitus is personal to me. And it really doesn't matter whose tinnitus we're talking about!Thanks so much for adding a personal touch to the topic.
I could not disagree with you more, Lynn. With the exception of one patient back in 1998 (where it was due to my own screw-up), I have never encountered a single TRT patient who could not "handle" the sound component. The problem does not lie with the patient. The problem does not lie with the tinnitus ("reactive" or not). The problem does not lie with the hyperacusis. The problem does not lie with the protocol. The problem lies with the clinician.Perhaps those with reactive T or H get worse with the gens. I know 2 personally (and more if I think about I am sure) this happened too..Not everyone can handle TRT sound component or"gens"
I could not disagree with you more, Lynn. With the exception of one patient back in 1998 (where it was due to my own screw-up), I have never encountered a single TRT patient who could not "handle" the sound component. The problem does not lie with the patient. The problem does not lie with the tinnitus ("reactive" or not). The problem does not lie with the hyperacusis. The problem does not lie with the protocol. The problem lies with the clinician.
Depends on by whom! Are you saying that they are highly regarded in TRT circles? Or just in general?Well these clinicans are highly regarded Dr. Nagler
In my experience, yes....so I don't know what to say..Are you suggesting that every single person can handle the gens?
I do not know who those clinicians are - so I cannot say one way or the other. But "crap" is pretty harsh. I do not wish to be critical in any way, Lynn, but if a patient of mine couched various comments in black and white terms like that, I'd want to explore whether or not at least part of his or her problem might be all-or-nothing thinking. And I might consider adding some elements of CBT to my therapeutic approach.Cause after thinking about it more, I thought of two more people plus people here at TT. Are all these clinicians crap?
Yea, I get that. I fully admit that I had it much much easier back in 1994-5. First of all, there was only one guy for TRT. And I knew he was good - since he was the fellow who came up with TRT in the first place. Second, there were no tinnitus boards to cast doubt and scare the crap out of me. (The term does have its charm, no? )It is the single biggest reason I have not done TRT. I am afraid to get worse.
Yea. I guess not. But there is no "lol" about it! It's a damned shame. That's what it is.Dr Nagler...apparently they are highly regarded..but I guess not lol
Seems the old fart got that one right, huh? Maybe I'm not such a slouch after all!I am all or nothing and working on it
Lynn, TRT is a "want to" - not a "have to." There's no gun to your head!Yes after almost 2 years I am still on the fence regarding TRT but it sure sounds nice.
I can understand that.Just not sure it's for me...I keep getting worse and it scares me.
Either way, you did not offend me in the least. Look, this board has of late been the proving ground for offense. If anything, you have been an absolute angel - "crap" and all!I am direct myself so it's all good..My language is just how I speak..I'm a small town girl from Canada..I hold back, believe me...sorry if my usage of "crap" offended you but you're not the "crappy" clinician so what does it matter anyways..
TRT deserves a lot of criticism. But there is a lot to recommend TRT as well. I try to tell it like it is - the good and the bad.I defended you earlier today because I was in a good mood and lately you have really been going out of your way to help others and I truly respect that...just so you know I wasnt on the attack TRT fence with my earlier comment..it's just what I have observed.
Back at ya!Cheers.
Yea. I guess not. But there is no "lol" about it! It's a damned shame. That's what it is.
Seems the old fart got that one right, huh? Maybe I'm not such a slouch after all!
Lynn, TRT is a "want to" - not a "have to." There's no gun to your head!
I can understand that.
Either way, you did not offend me in the least. Look, this board has of late been the proving ground for offense. If anything, you have been an absolute angel - "crap" and all!
TRT deserves a lot of criticism. But there is a lot to recommend TRT as well. I try to tell it like it is - the good and the bad.
Back at ya!
I wish headphones worked for me like they work for others... maybe with some more time.
Anyways, I'll let you guys know how the TRT sound therapy is going.
Hello,
I wanted to and was asked to contribute my experience from going through TRT twice over the course of a year. I have been removed from the experience for about a year, so I will try and just talk about my experience and the facts and just keep some of the emotions out of it.
Background
I have had tinnitus for most of my life, and have had it for some degree since I was about 15 (I'm 27 now). It didn't get worse until in the summer of 2014 when I was exposed to multiple gun shots without the right hearing protection. From that experience, I gained an increase in my reactive tinnitus and acquired moderate hyperacusis.
Treatment
I had to take a year off of school after the gun shot incident, due to my T and H and tried to seek treatment. Luckily, I was able to get into the Tinnitus Clinic at St Pauls hospital (Vancouver, British Columbia, Canada) to see Glynnis Tidball. She helped me work on managing my emotions, my T and my H and how to employ sound enriching and stress lowing practices. She is also just a wonderful human being all together!
TRT (First Experience)
Through Glynnis's recommendations, I went and saw an audiologist in Vancouver (and really, the only game in town) who was going to help set up and get me going on the sound portion of TRT. To put it lightly, the audiologist and I didn't get along very well. I was still very emotional at that time, and she was hesitant and in some cases refusing to answer some of my questions, instead saying that they would be dealt with through the counseling part of TRT with Glynnis.
Because of this experience I decided to take back the devices during the 30 day trial period. To say that this was a blow to my confidence of getting better would be a totally understatement, but I tried to just carry on as best I could.
TRT (Second Experience)
After this very upsetting experience, I found out that there was another audiologist on Vancouver Island (A two hour ferry ride and drive to get out there) who also administers TRT. I went and saw her and it was a much more positive experience! I made a couple trips out there (consultation, fitting and getting the devices) and they were much more comfortable – both by fit and the sound that they administered (I got to actually pick which types of sound that I wanted to use).
With these devices I found that I was able to get some sort of relief and was starting to finally get the edge on my T and H a bit. I had the devices for a 3 month trial period, which was a much better time frame for me to actually be able to get a feel for the devices.
Around this time I was starting a job working as a park patroller in Kelowna (Summer lake town) and was spending many hours in hot weather and was quite sweaty and greasy (gotta have the sun tan lotion!) from walking so much for my job. So it should be noted that this probably wasn't the best environment for them compared to if I worked in like an office building or something.
After about a month of having the devices, I started to notice that my ears were getting more reactive, and would spike when around things such as water and other noises. As you can imagine, I was quite concerned. I brought these concerns to the audiologist and she did a very good job addressing them, even scanning portions of the TRT texts and sending them to me as a resource – which I GREATLY appreciated. Long story short, its very common for people to experience this in TRT and it usually settles after more use of the devices.
Unfortunely, as the 3 months we're approaching, my ears were still quite being quite reactive, especially to water sounds. I was also having issues with the fit of one of the ear buds due to my ear canal being very narrow and straight (Again the audiologist was great, actually shipping me new buds to try and hopefully fix the problem). At the end of the day, I think my work environment just made it hard to get the best fit.
So at the end of the 3 months, I returned the devices. That's to say without a lack of trying on my part, or the audiologist's part!
Summary
My experience with TRT is a bit of a mixed bag – but I would still recommend it to anyone who has T, H or both. With the audio part of TRT, I had a much more pleasant experience with the second audiologist. If I were to have issues with my T, or if my H came back worse then it is now then I would back and see her.
With the counseling part of TRT, it was literally a lifesaver. Over the course of a year and a half I went from almost a suicidal state, to one where I was able to live a mostly normal life excluding some nosier activities (Movies, concerts or clubs…which I really didn't go to before this happened) and just protect my ears when it was necessary. I can now see why it's stated that in many cases the counseling part of TRT can be more important then the audio portion.
In my case it came down to a couple of factors: The reactiveness of my tinnitus, the cost of the devices ($3,000) and the fit of them. Since I was still having issues with the fit, I decided to return the devices and try again at a later date.
Where I am now
Currently I have returned back to school and am trying to work towards getting my career going. My T is still pretty moderate and does fluctuate. But through trying to maintain a level emotional state, sound enrichment (sound machine playing 24/7 at home) and trying to have a healthy life style I have noticed a reduction in my H. I could also attribute this to the management of my TMJ issues, which still cause me some issues sometimes as I can clench my teeth when I sleep sometimes or from stress.
As of right now I don't really have a need for TRT (and hope not to in the future), but if I do then I would return to that second audiologist and give it a try with her again.
Thank you Tinnitus Talk ( and @Markku ) for all the great work that you do, and I hope that this helps anyone who is thinking about giving TRT a go and is just weighing the options. If anyone has any questions, then feel free to shoot me a message and I'll try to help out in anyway that I can. I'm not on here too much anymore, so it may take me a bit to reply but I was surly do so!
Cheers,
Kris
Glad to see you're doing better Kris!!