Acoustic CR® Neuromodulation: a New Treatment for Tinnitus

I remember this being one of the first treatments I discovered when I first got tinnitus back in 2012 and came to this forum.

Is it actually any good or useless like many other of these types of treatments?

 

As with all the other types of treatments, they all depend on the individual. What works for some, doesnt work for many others. You can try a free version of it online and see if it makes a difference for you.

 

Hi all,

I don't visit this site much but have found some helpful post and links when I do. I want to return the favor and thought I would try to document my use of Desyncra, which I started using yesterday.

I was part of a clinical trial and was placed in the CBT group. At the conclusion of my participation in the study I was given a Desyncra device, which is what the other group used. I don't know if I would have participated in the study if I hadn't been told I would get a Desyncra at the end.

I think CBT can help people but I, like many, want a physiological solution and don't want to settle for just "learning to live with it." I've lived with it for 9 years. Anyway, the Desyncra is an iPod set up to only use the Desyncra app along with medical style headphones. They look like hearing aids.

Results are supposed to take many weeks/months. The first day I listened for about one hour at lunch time and three hours in the evening. One hour is the minimum time per session and they recommend 4-6 hours per day. When I went to bed my tinnitus seemed a bit louder than normal. That combined with the anxiety of trying starting this new treatment kept me from falling asleep for more than an hour. I think I'll keep today's time to about 2 hours and ease into it.

 

Good luck to you. Let us know how you do!

 

Yep, let us know! Thank you.

 

Hey @J5555

Are you still doing the Desyncra treatment?
I was wondering if it did help you even a bit since your last post.

I would have the possibility to do it here in France. I am just not sure if it is another snake oil therapy and seems super expensive.

 

Hang on for Neuromod. Desyncra only works (possibly) for tonal tinnitus up to 10 kHz. And it’s like 36 weeks of 4 hour beeps a day. Impractical.

Neuromod is an hour a day for 12 weeks and has the added benefit of tongue stimulation to change plasticity.

 

For sure I'm all about Neuromod as well when it's about this kind of treatment... especially that I am not living so far from Ireland, but I was wondering if some people got some improvement with ACRN as the psychology I saw today told me they had 90% good result, almost made me laugh to say the least, that's why I wanted to ask here more info about it.

 

According to their website they have treated 4,000 patients with many reporting complete elimination of tinnitus.

Are you really going to pay thousands for this and wear it for 4 hours a day for 36 weeks with no guarantee of improvement?

I’d wait for Neuromod and the last device (MuteButton) was cheaper. Neuromod looks much more easier to use, takes less time and by the sounds of it is more efficacious.

 

I think I'll be waiting... just was trying to get more info about it.

 

There's something I don't get about this. OP provided a link to generalfuzz's website (which is still live). On there are two further links, one to ACRN treatment, which is actually a link to the London based Tinnitus Clinic, the other to Peter Tass's study describing CR Neuromodulation.

The Tass study paper is a long and complex read but from what I've gleaned leafing through it is, his team managed to achieve some very good results from the test subjects they worked with. There appeared to be proper controls along with a placebo group etc., and it all looked very promising at the time.

The anomaly here is, the ACRN link to the Tinnitus Clinic is now dead and it appears they no longer offer CR Neuromodulation as a treatment. Moreover, what they're actually offering (instead?) is, Lenire, which they even state is "clinically proven"; a point I think those at Tinnitus Talk who combed through last year's data would differ on.

This doesn't make sense. Despite the credible and optimistic Tass paper, has CR Neuromodualtion been and gone, replaced by a questionable Bi-Modal Stimulation device, or am I missing something really obvious?



For clarity, this post was moved from the DIY ACRN thread to here.

 

The pessimist in me thinks this is because @generalfuzz was able to create an application from the research and release it for free, which could spook pharmacy corporations from investing money into further research and improvement of the technique. I would hate to be right but it feels possible.

 

Good point. I was thinking about emailing Peter Tass but there's no direct contact info for him, only a general contact address at the Stanford site. As I say, after reading his paper it gave me much more confidence in his approach than the current state of play with Neuromod and Lenire.

 

@UKBloke, is this ACRN research paper an older paper? Can you link to it? @generalfuzz’s ACRN has provided me very momentary relief and I was hopeful for it as well as an effective treatment until I found out Desyncra and others do not exist any longer.

 

Hi, yeah it's here.

It's an old paper, 2012 I think. But it does make for a very interesting and optimistic read, which is why it's such a puzzle that Desyncra (and the eventual CR Modulation device also derived from the paper I think) are discontinued. Who knows? Anyhow, happy reading.

 

I neglect to recall who shared this but there is an updated research paper on how they could improve on neuromodulation with spacing.

I talked to an audiologist who use to administer Desyncra in my area and he advised that it was company mismanagement more than anything. Ridiculous. I’d love to know if the researchers in this paper are pursuing anything at this point in time based on this update:

Treatment Tone Spacing and Acute Effects of Acoustic Coordinated Reset Stimulation in Tinnitus Patients

P.S. I sent an email to Tass’s lab to inquire about that recent study just now:

https://med.stanford.edu/tass-lab/contact.html

 

Is your tinnitus tonal?

 

Is Prof. Tass still investigating tinnitus with his approach? I saw the study above and wonder if they want to optimize the coordinated reset treatment. Did anybody reach out to him?

 

OMG, you talked to an audiologist who used to offer Desyncra (who are no longer in business)?

What did this person mean by "company mismanagement"?

Please recall that I was actually inveigled in 12/16 into spending $6,200.00 on their so-called "therapy", which entailed wearing their headset every day for 6 hours for 36 weeks, and which no American Health Insurer would cover.

And, it had as much of an effect on my tinnitus as shining a flashlight on my head would have had. I let them know this in an e-mail, and they said they were sorry but were nonetheless totally noncommital. And, the audiologist who provided it that the gall to notify me after this 36 week period that if I wanted a frequency correction, it would cost even more.

I was induced into trying this because their first website had all sorts of impressive-seeming graphs and charts from alleged Clinical Trials run in Germany, Hungary, and the UK. Also, when I first contacted this audiologist, she said that, given the "revolutionary" nature of this treatment, she was really confident that it would eliminate my tinnitus.

I later showed their iPod to techies I know, and it was just a cheap Apple device available anywhere. The tones it produced were claimed to be unique, but I discovered were actually available on any number of YouTube channels.

At the end of this 36 week period I asked the Audiologist (who was in a tony, expensive part of Chicago) how many clients purchased this. "Including you, nine", she replied.

"OMG, I replied. Given the pervasiveness of this condition and us being in the third largest City in the USA, that's all?"

She admitted that there were quite a number of last-minute cancellations or just simple no-shows. I finally asked myself why I didn't also intuitively recognize the dubiousness of their entire approach.

If they had not gone out of business, I would have submitted a succinct report about them to our Illinois Consumer Investigation Bureau.

My wife said, "This is the f**king last time you ever withdraw from your IRA for some gizmo that has not been carefully vetted and endorsed by numerous ENT doctors and success-reporting clients."

There have been four such Sound "Therapy Devices" offered:
1) Desyncra
2) Neuromonics
3) SoundCure
4) The Levo System

Are any of them still around?

If you run into this audiologist again, I would have no problem in you reading this to her just to see what her self-defensive reaction would be.

 

When I first got tinnitus, I saw an audiologist to try hearing aids, even though I had only mild hearing loss, and not in the frequency of speech. The hearing aids also had some white noise masking.

The hearing aids were not helpful. They only made my tinnitus worse likely due to hyperacusis. And the masking was a white noise so faint, my tinnitus simply screamed above it. Useless.

Luckily, I could return the hearing aids after 30 days and get refunded most of the $3,800 cost (the audiologist fee of $300 was not refunded). And due to her improperly billing my insurance, I had to ultimately pay $400 for the initial tinnitus/hearing assessment, which should have been covered by my insurance. Trust me, I spent months and months and months trying to work it out.

This same audiologist tried to then sell me on the Levo system—“I’ve got a device that could really help you. Come to the presentation.” Who are you? A car salesperson or a medical professional? I was told the cost was $5,000, and it had to be worn all night for at least 30 days before you could return the device for a credit if it did not work. Miss one night or not wear the device the full night, no refund! I emphatically said no to this!

The best part was what she said to me when I returned the hearing aids after the 30 day trial: “Well, I guess you just aren’t ready to get better.” I’m just not ready to get better!!!

Her voice was dripping in condescension. It was so infantilizing and shaming. It was infuriating. Can you imagine a medical professional telling someone with Parkinson’s or another serious medical condition that they just didn’t want to get better if a medical treatment did not help them?

By the way, this was an audiologist at a major university in a major city.

 

Thanks very much for the report. The Levo System was, I believe, the last of these touted "Sound Therapies."

"Come to the presentation" is one of the oldest, manipulative sales tactics; I recall Alec Baldwin's comment in "Glengarry Glen Ross": "A guy doesn't walk onto the lot unless he wants to buy."

If you can get them into a room, then you can go to work on their susceptibilities. (Or, hold them captive until you've made the sale).

All of this chicanery for the promotion of outrageously priced placebo junk, even among credentialed professionals, is the result of a for-profit-driven Healthcare Industry; I'm sure in both our situations the audiologist would derive a commission as a percentage of each sale.

The treatment you were subjected to could very probably have been from the manipulative sales-technique coaching the audiologist received.

The only benefit from all this is indicated in Lincoln's oft-quoted remark: "You can't fool all of the people all of the time." Let's hope that these purveyors of placebo junk have run their course in that they have been sufficiently exposed so that potential recipients are far more wary and will exercise a protective, careful judgement.

Given the above, I would be hard pressed as a marketing consultant to devise a persuasive campaign for selling Lenire. There may be too many of us Veterans of previous schlock enticements to be won over.