Acoustic CR® Neuromodulation: a New Treatment for Tinnitus

[Louise]

Here is the table which someone on a German forum compiled. I forgot to say on the last post that the refund policy of the London T Clinic relates only to the device, you dont get the consultancy fees back. I asked what happens if you havent used all the consultancy visits included in the 4.5k package, do you get that money back, but I didnt receive a reply to that email.

Posted by Ulerich

1. 3Marc canceled terminated / deteriorated Link
2. Lanthanum canceled terminated after 12 weeks / deteriorated Link
3. Apple farmer stopped after 4 months no change / headache link
4. Isolde canceled terminated after 5 weeks / no improvement Link
5. Juewags aborted ended after a few months / no improvement Link
6. Texas completed in 3 months, no change in link
7. muhmann aborted ended after a few months / no improvement Link
8. summer canceled terminated after about 3 months / no improvement Link
9. eitherway running after 4 months of no change link
10. Erica47 runs after 5 months of no change / more negative link
11. Colbie runs right eliminated, eliminates left 1 tone, significant improvement Link
12. Bonnibonn läuft?​
    Bonnibonn runs?
    rechts 3200 Hz eliminiert Link​
    3200 Hz eliminated right link
13. Sentinel is running? initially improve, then stagnant Link
14. Karlheinz runs? after 2 months decreased from 70 to 45 dB / no feedback link
15. The thing is? after 12 weeks left eliminated / right quieter and deeper / no further link
16. Annette runs after 1 month lower by 27 dB / new in Link Link
17. janni2298 slight improvement after 8 weeks of running link
18. Memento runs Link
19. Fuchs23 runs Link
20. Radiesel runs Link
21. Pino72 runs Link
22. patti1987 runs Link
23. erasus runs Link
24. Argu1788 runs Link
25. Anja1 runs Link

red = no improvement, light green = improvement (sustained, long time), dark-green = improvement, including speculative Bonnibonn, Sentinel, Karlheinz, the thing

Bonnibonn, Karlheinz and the thing have been the last, more recent articles written any more recent entries, which suggests that the treatment is likely to be positive. Accordingly, I have assigned them an evaluative "dark green", but this may well be wrong.
The other entries without color code are to be assessed to new order. Then, the following picture:

10 of 17 = 59% negative,
accordingly 7 of 17 = 41% positive.

Considering, however, "Bonnibonn", "Karl Heinz" and "the thing" is not from above reasons, the result is a far bleaker picture:
negative: 10 of 14 = 71%,
Positive: 4 of 14 = 29%.

In none of these cases has been reported that the TT was completely eliminated after the treatment.

It would be interesting in this context, whether for a longer-lasting relief without stimulator was sustainable or if after some time the device had to be used again.

Ulerich

 

[erik]

Good info Louise. I think all these sound type therapies are a hit and miss depending on a variety of factors. I don't think there is a one size fits all solution to tinnitus at the moment and that is why success vary so much between treatments. There are many diff types of tinnitus and causes and so these therapies may only be beneficial if you have a particular type(s). Some interesting, though hard to know questions regarding this would be related to the subjects tinnitus history: what type of tinnitus the subjects had, possible cause such as acoustic trama, if it is unilateral or bilateral, if there are any somatic factors such as tmj or neck/other muscle issues, age of subjects and how long they had had tinnitus. Other factors which may or may not affect success of this treatment are the subjects on any medications and if so which types etc. With this info you could then conclude which tinnitus factors were more prevelant to the successful subjects vs those who did not receive any benefit.

 

[Louise]

That's exactly what I think too Erik. I think its important to know the cause, or rather the mechanism of your tinnitus.
The Acoustic NM works on the theory that the neurons in the Aud Cortex are tuned to specific frequencies and if they are deprived of sound due to hearing loss they go crazy and join together, firing too fast and synchronously. The machine works on bringing them back into line by making them listen to tones close to the T frequency and this breaks up the synchronicity. But if your T isnt happening by this mechanism then the device probably wont work?

What if your T is because the info going to those neurons is corrupted due to damage to the aud nerve? Then they arent being deprived of sound, its that the sound signal is being corrupted. Listening to tones wouldnt stop that, they would just get corrupted too.

Someone posted something about the latest MRI scans can show you your neuron activity? Thats what Im going to ask for next week when I have my app with the ENT surgeon. Maybe I'll be able to spot that theres a big bunch of neurons all gone crazy together, in which case the ANM would probably work!

 

[carlover]

Hi all ,new member came on to give you a heads up.

Dec 23 last year is when I pulled my credit card out in Harley st and divvied up for this.

Every day for 6 hrs ive listened for 6 hours ,easy to use can get on the phone etc.

Has my Tinnitus gone ........no , I try not to think about the money.
However im glad I have it.Why? In the morning my T is lous ,loud ,loud I put the CR in and the beeps are therauputic knocks the noise and the pain I have out. Now the thing is after a couple of hours if I take it out my T is no longer a jet engine but a sea shell ssssccchhh which is tolerable,this lasts a few hours. So what I do is make sure ive get some hours in before bed ,it makes my T just about liveable when I go to bed.

Buy the way for one year exactly for 3- 7 hrs a day I played the sound therapy international australia tapes it did NOTHING for my Tinnitus ,BUT my hearing improved ,instead of 28 vol on TV I can now put it on 16.Now that did gut me,I really thought that would sort me out I believed in the Tomatis theory.

All the best ,Pete

 

[Louise]

Hi all ,new member came on to give you a heads up.

Dec 23 last year is when I pulled my credit card out in Harley st and divvied up for this.

Every day for 6 hrs ive listened for 6 hours ,easy to use can get on the phone etc.

Has my Tinnitus gone ........no , I try not to think about the money.
However im glad I have it.Why? In the morning my T is lous ,loud ,loud I put the CR in and the beeps are therauputic knocks the noise and the pain I have out. Now the thing is after a couple of hours if I take it out my T is no longer a jet engine but a sea shell ssssccchhh which is tolerable,this lasts a few hours. So what I do is make sure ive get some hours in before bed ,it makes my T just about liveable when I go to bed.

Buy the way for one year exactly for 3- 7 hrs a day I played the sound therapy international australia tapes it did NOTHING for my Tinnitus ,BUT my hearing improved ,instead of 28 vol on TV I can now put it on 16.Now that did gut me,I really thought that would sort me out I believed in the Tomatis theory.

All the best ,Pete

Hi Pete,

Thanks for posting this info. Could I ask a few questions as I have been seriously thinking of trying the ANM (when I've saved up ).

How did you get the T and was it constant when you started with the ANM or did it come and go?
It sounds like your sound isnt entirely 'tonal' more like the roaring/whooshing type, is that right?
How many times did you have the tones adjusted? Did you have them adjusted at all due to a change in the T noise?
This is a bit of a controversial question so if you'd rather not comment I understand; how did you find the service at the Tinnitus Clinic? And, which of the Audiologists there fitted your device?

I'm glad it give's you at least a little help. It sounds like its working through Residual Inhibition. Have the Tinnitus Clinic commented on that for you at all?

Thanks, Louise.

 

[carlover]

Hi Louise ,wish there was a PM on here I could PM you my phone number ,long posts drive me nuts but ill have ago.

If you go there make sure you see Mark the head audiologist ,didnt think much of the other one I saw.

They reject 50% of people for varius reasons,ie deaf or seashell type T.Mine is Tonal.
I have had it adjusted about 6 times and that is a skill to get the beeps the right pitch,some people cant get it and get their money back less £2000 before 8 weeks.

Money back guarantee mmm well 8 weeks is too short for treatment its just if someone cannot get on with it I guess.

I know all about the Trial about to take place at the Univ Coll Hosp.
If you go on it ,you may be the unlucky one who has the Dummy.The real drawback is that its for 3 months,again that is a short space of time ,the german clinic has had people who got no relief for 18 months and it finally kicked in.

I broke my nose very badly playing football 25 years ago a week later T arrived one night and its been with me ever since. I lived with it till 2 years ago when a catarrh infection turned into a 4 month ear infection which has made my T very bad. Before T was part of my life now it is my life.

Thing is Louise ,I have tried everything you name it.

Out of all the things ive tried This CR NM is the only thing that changes it.But it still comes back with a vengence and that is 9 months of 6 hrs a day.

Incidentally ,I spoke to a Professor who is on the Tinnitus researh team at Nottingham.This CR thing is their best bet at the moment,sadly in their opinion there is nothing on the horizon.

Lots of luck ,Pete.

 

[Louise]

Hi Louise ,wish there was a PM on here I could PM you my phone number ,long posts drive me nuts but ill have ago.

If you go there make sure you see Mark the head audiologist ,didnt think much of the other one I saw.

They reject 50% of people for varius reasons,ie deaf or seashell type T.Mine is Tonal.
I have had it adjusted about 6 times and that is a skill to get the beeps the right pitch,some people cant get it and get their money back less £2000 before 8 weeks.

Money back guarantee mmm well 8 weeks is too short for treatment its just if someone cannot get on with it I guess.

I know all about the Trial about to take place at the Univ Coll Hosp.
If you go on it ,you may be the unlucky one who has the Dummy.The real drawback is that its for 3 months,again that is a short space of time ,the german clinic has had people who got no relief for 18 months and it finally kicked in.

I broke my nose very badly playing football 25 years ago a week later T arrived one night and its been with me ever since. I lived with it till 2 years ago when a catarrh infection turned into a 4 month ear infection which has made my T very bad. Before T was part of my life now it is my life.

Thing is Louise ,I have tried everything you name it.

Out of all the things ive tried This CR NM is the only thing that changes it.But it still comes back with a vengence and that is 9 months of 6 hrs a day.

Incidentally ,I spoke to a Professor who is on the Tinnitus researh team at Nottingham.This CR thing is their best bet at the moment,sadly in their opinion there is nothing on the horizon.

Lots of luck ,Pete.

Thanks for this post Pete. Its so interesting to hear from someone who has had a go with it. I had the 'Assessment' for £185 but was not and am not in a position to pay 4.5k just yet.

I was going to ask to see the head guy if I went for it and now you've confirmed that I should. Would you be able to say the name of the other guy you saw? Just wondering if it was the same person who did my assessment.

I've had a fair few unanswered emails to them and also phone calls, so Im not impressed by their service. It might be different if you've spent the 4.5k I suppose.

That refund policy is odd I think because what if you dont use all the consultancy time, you still dont get it refunded.

I didnt know that the German Clinic (do you mean ANM themselves?) had someone who it started to work on after 18 months. The literature I've read says most of the changes are in the first weeks. Good job that person clung on - how tenacious! I give up hope too easily I think

I wonder if Im too late for that big test that going on?

You've been unlucky with your T then. So bad the catarrh came along. Our ears must be so delicate. I made mine a lot worse by going to the theatre 3 weeks ago. I honestly didnt think there would be a problem. Now I really cant sleep.

About the NM being the best bet, have you seen the posts in the other threads from Karl? He posted one last night about an op that is showing a lot of potential. He's posted other stuff too that really looks promising. Then there's the AM101 drug 'coming soon'. I emailed them about it and they said they have Phase II trials coming to an end next year and then they have to do Phase III. Yes, its some years out but it does sound like they are getting somewhere with this thing now.

Have you tried Amitriptyline?

Hope the ANM kicks in for you down the line like it did that other guy.

Oh and sorry for the long post

 

[Markku]

Hi Louise ,wish there was a PM on here I could PM you my phone number ,long posts drive me nuts but ill have ago.

There is "PM" here. It's called Private Conversations. Click Louise's name on the left side of her post and then sort of a pop up opens where you can click "Start a Conversation", which is PM.

 

[erik]

Carlover mentioned this helps with tonal T which seems to be the common theme with all these audio based therapies. Mine is not tonal, more hissy. I wonder percentage of people have tonal T vs. non-tonal?

 

[carlover]

Hi Markku ,thanks ,I have PMd Louise,
Hi Erik ,sorry mate ,your hissing rules you out of Crnm .
Mind you a positive for you is CRNM turns my tonal into Hissy and that is far more liveable.

Good Luck all ,Pete

 

[carlover]

By the way Louise ,you mention £4.5K I paid £6K so am I due a refund?

They did say that in the papers it said 4.5 but was in fact 6 so where did you get that figure,from them?Pete

 

[Louise]

Gosh Pete, it says £4500 on their website and I've been told pseronally that's the price. That includes £2670 for the ANM device and the rest is 5 (maybe 6) consultation appointments with them to monitor it and make adjustments. It's on the site. Wonder why yours was 6k?

Erik - on the German T site (where I got the results table from) there were posts saying that ANM were working on a method of the device working on non-tonal T. I dont know how far along they are with that.

I think it would be good to get stats on who has tonal T, changing from day to day T/constant T vs the causes of the T. I am wondering if there is anyone out there who has T caused by acoustic trauma that also changes day to day or whether if its caused from acoustic trauma its always constant. Like mine

 

[carlover]

Flip me Louise (swearing madly here) i paid 6k I shall be on the phone monday.Mind Guess im snookered.

You know when you used to buy something for xmas then next month it was cheaper ,nothing you can do.
the only thing that is different is they charge £150 after 5 resets ,im sure that was not on their before.

 

[Louise]

Flip me Louise (swearing madly here) i paid 6k I shall be on the phone monday.Mind Guess im snookered.

You know when you used to buy something for xmas then next month it was cheaper ,nothing you can do.
the only thing that is different is they charge £150 after 5 resets ,im sure that was not on their before.

That doesnt seem fair. Maybe they chraged 6k for it at first then dropped the price? That's a big drop though. It might be worth speaking to them, you never know....

 

[Louise]

Does anyone have a feeling of fullness in their tinnitus ear/s? My T ear often feels full or sort of blocked/numb/dead. It feels physically different to the other. There's not much info about this across the net. There's definitely no wax in there. Just wondered if other people have this too?

 

[Karl]

Louise -
I'm extremely impressed with what you have found. Using Google's German translation program was absolutely brilliant! And your analysis is fantastic!

The cost of the Acoustic Neuromodulation device seems very steep. The results don't coorelate very well compared to Dichonics, which is about 75% cancellation.

I think Dr. Dalton of Dichonics has a unique understanding of the auditory system. He's been refining his procedure since the mid-1990's. I hope he just "gets on with it" and starts selling his Internet version. ("No", I don't work for Dichonics.)

Of course I assume the Germans have their own theories behind why the Acoustic Neuromodulation device should work. I know that it imploys frequencies that are above and below the tinnitus frequency - sort of "cornering the beast". But if they are saying tinnitus is due to neurons "being deprived of sound", that's a new one I've never heard of before.

Yes, my ear also felt full for a few months when I first got "T". That seems to be a common complaint.

 

[Philip Datlen]

As posted earlier on this thread I will be off to London tomorrow to have my first consultation/tests on my participation of the Neuromodulation device trial in the UK...I will report back on the findings in the next couple of days...hopefully all is good...

 

[Fish]

Good luck Phillip and enjoy your trip!

 

[fr78]

Anyone has further experience with this?

I called a few doctors in Germany and they told me it is worth a try, though the huge price is a drawback for most people.

I am really close to giving up everything to try this. I am a university student and I'm suffering incredibly from tinnitus. Still not sure how to fund it though.. it's a pity there are not more trials.

 

[carlover]

Thought it fair to come back and say I am getting a £1500 refund from them.

My package was for as many revisits as i wanted ,this new package has 5 visits and after that £150 a time.

Today is actually my 6th re set but they have waived that.
They are a decent lot there.

 

[erik]

Great on the refund. Overall how has the treatment worked for you?

 

[carlover]

Hi Erik ,10 months ,still Bad T. It has taken people 18 months to crack it so I plough on
One thing I can say is after using it the T is like a sea shell not jet engine and thats a lot better lasts a couple of hours.
One thing Id like to add the therapist was talking about sound enrichment for going to sleep ,Isaid everything ive tried I find irritating. Bearing in mind ive tried White noise and Pink noise cds he gave me (no charge) a purple noise CD (had never heard of Purple) Have to say its really good blends in with my T knocks it out and the sound is very comfortable. he said people with High Freq hearing loss like me will find Purple a really good Masker.

There you go,all the best Erik Pete

 

[Mark]

HI all,

I have been on the trial in the UK since the end of September. I have recently been told that I have received the correct treatment (not placebo) since the beginning of the trial. So far I have very little change in my tinnitus (if any). Apparently it can take up to 6 months for this treatment to have an effect. Using the device has been fine, I think I am happier just giving it a go with the hope that it will have a positive effect. Personally I see it no different than a masking agent which takes my attention away from the Tinnitus, also I can not detect much difference in my tinnitus once I remove the device. However, I can report that if the device is configured incorrectly it can have side effects such as headache and sleep disturbances which I have been experiencing in the last 2 weeks, going back to the clinic next week to get the device reconfigured which will hopefully sort out the negative side effects.

Best,
Mark

 

[Louise]

Very interesting Mark, thanks for posting this. Have the trials come to an end now and were you part of the trials based in Nottingham?

Could I ask, if your T tonal (must be to be accepted?) and did you find it easy to pitch-match it?

The ANM is definitely supposed to me more than a masker. It seeks to excite specific neurons with the aim of busting up the pathologically synchronised neurons. Thats what their algorithm does based on your pitch-match.

 

[Debjj]

I am currently taking part in tinnitus clinical trials of the ANM Neurostimulator. I have been wearing the device for 3 months & so far, much to my negativity, I am pleased to say that results are positive. Anyone thinking of trying it (it is currently available from the Tinnitus Clinic in Harley Street), I would say - go for it. It is by no means a quick fix and not particularly pleasant to wear (4-6 hours every day), but my tinnitus has definitely improved. If anyone wants to know more, let me know.

 

[Louise]

Hi Debjj,

That is really good news. I knew there were some people out that that got good results with it!

I cant try it as my T isnt tonal. I'm presuming yours is?

Hope you continue to get good results.

 

[pen]

Hi Debjj,
did your T fequency change ? also has the level reduced ? did you find it easy to match you T frequency ? i think this is one off the most difficult thing to get right for this treatment. I think it can be easy to get this wrong, and then the treatmeat wont work, did they test your T frequency on different days. How often did you have to go back to get it readjusted ? Any other information you can provide would be much appreciated. Sorry to ask so many questions, but I live in ireland, and would have to fly to london for this. Thank you.

 

[calin]

 

[Debjj]

Hi, (sorry, not sure of your name)

Matching the tone is definately the difficult part & each time I go, I get home & think I'm not sure I got it right! It is very very difficult & quite stressful (just what you need when you have tinnitus!). It is also very time-consuming; takes several hours each trip. Initially, I had to go every 2 weeks, then once a month & this next time is 6 weeks. I live in Bristol & have to travel to London every time, so it is not cheap or quick. But I felt it was my only hope as I passed all the in-house screening etc.

I have only noticed an improvement these past few weeks (been using it for 3 months), nothing drastic, but all I can say is that I knew I wasn't as aware of my tinnitus as much as I usually am; concentrating whilst watching tv & reading, two things that I really struggle with & also sleeping (the hardest thing of all of course) were all just that bit easier. The tone has changed with time I go, my left ear was incredibly high pitched & the tone had come right down, my right ear is just generally quieter. Will it last though? Since it was adjusted again last week, it hasn't been so good, but after each adjustment this does seem to be the case. In fact, at the very beginning it was awful - I developed a seriously horrible humming noise, deep in my head (as well as the usual tinnitus) & I was SO scared that it wouldn't go, but they assured me it would settle & thankfully it did.

All I can say, is that I knew it would be 9 months of total commitment & it certainly is. I'm lucky enough to not have to work whilst I'm on these trials, but if I was working, it wouldn't be easy. But for me, anything was worth trying.

If you want to know anything else, feel free to ask.

 

[Debjj]

HI all,

I have been on the trial in the UK since the end of September. I have recently been told that I have received the correct treatment (not placebo) since the beginning of the trial. So far I have very little change in my tinnitus (if any). Apparently it can take up to 6 months for this treatment to have an effect. Using the device has been fine, I think I am happier just giving it a go with the hope that it will have a positive effect. Personally I see it no different than a masking agent which takes my attention away from the Tinnitus, also I can not detect much difference in my tinnitus once I remove the device. However, I can report that if the device is configured incorrectly it can have side effects such as headache and sleep disturbances which I have been experiencing in the last 2 weeks, going back to the clinic next week to get the device reconfigured which will hopefully sort out the negative side effects.

Best,
Mark

Hi Mark

I think perhaps we are on the same trials. I found out last week that I too have been on the treatment & not the placebo. Thanks for posting about the headaches - I have been having some really bad headaches for the past 6 weeks. I actually saw my GP last week as I was getting worried. I hadn't really connected it to the tinnitus device although it had crossed my mind. I had my device reset last Thursday & my head seems easier. It may of course be a coincidence, time will tell! See, they don't tell you anything, do they. I have been worried since Thursday that I have not pitched it right this time, it's so hard to get it right, isn't it? By the time you get home the pitch has changed, then what?!

Did you have any problems at the start? I developed a horrible, deep humming initially, which nearly drove me nuts. Good job we are already pretty nuts from the tinnitus!!

How far do you have to travel? Hopefully it will be worth it in the end.