Participant Experience: Vagus Nerve Stimulation (VNS) Paired With Tones for Tinnitus

[Silvio Sabo]

Except that the tinnitus loudness is ultimately measured by audiology. So barring any false reports in the minimum masking level assessment, it will not change the outcome of the results.

The placebo effect is not something imaginary. The effect is actually measurable. There have been reports of people recovering from all kinds of ailments when given only placebo, even cancer. And they don't just THINK they get better. They in fact DO get better.

I sugest a google search on placebo, just so that you know what it really is.

 

[Bazz]

Hey labrat

I know you said you will not tell us about your results until the very end but could you let us know when roughly is the trial to end? Also do you know from them would there be any plans for other trials after this of it is successful or what route would they have to take to bring something like this to market and how long? Anyone's input is welcome
Thanks

 

[labrat10687]

Update is as follows. Stopped the therapy last Wednesday with my final appointment. Been at it since Feb. and for me there was no improvement either way. The therapy simply did not work. I do not know about the other people that are involved in the study. We will just have to wait until the final results are in to find out but in my case it simply did not work. Sorry for the bad news but I gave it(2.5hr daily therapy)my best shot and it did not work. Just thought I would let you know.

 

[Sjoerd]

@labrat10687 , that just sucks. I admire you for trying.

Any idea when they are going to release the results? Any idea when they are going to tell you if you had the therapy or the sham-therapy?

 

[labrat10687]

I was not given the sham therapy. I was given the choice to leave the implants in so that maybe later something might change with the settings of the therapy that might be beneficial. I decided to leave the implants in for now.

 

[erik]

Thanks @labrat10687 for the update. Sorry it did not work for you. Sounds as if most of these newer treatments in development VNS to Autifony and others seem to be hit and miss.

 

[dan]

Update is as follows. Stopped the therapy last Wednesday with my final appointment. Been at it since Feb. and for me there was no improvement either way. The therapy simply did not work. I do not know about the other people that are involved in the study. We will just have to wait until the final results are in to find out but in my case it simply did not work. Sorry for the bad news but I gave it(2.5hr daily therapy)my best shot and it did not work. Just thought I would let you know.

Thank you for the update.

I knew it would not work...I mean jolting the vagus nerve while listening to your T sound on headphones? Naaaaaah...

 

[Sjoerd]

I was not given the sham therapy. I was given the choice to leave the implants in so that maybe later something might change with the settings of the therapy that might be beneficial. I decided to leave the implants in for now.

How do you know that you had the real therapy?

This is the bad thing about research....you might just end up being wrong. To bad!

 

[labrat10687]

How do you know that you had the real therapy?

This is the bad thing about research....you might just end up being wrong. To bad!

The reason I knew for the first 2 weeks we(30 of us)were either given either the sham therapy or the real one. After 2 weeks we were told if we got the sham treatment or not(I was given the sham therapy for only the first 2 weeks)then we all received the real therapy. I started my therapy in Feb and my last therapy was last Wednesday. My therapy did not work and we decided to end the therapy.

 

[labrat10687]

Thank you for the update.

I knew it would not work...I mean jolting the vagus nerve while listening to your T sound on headphones? Naaaaaah...

Dan, If you would have been offered the therapy at no cost to you would you have done it?

 

[BrStan@]

Very intersting in the pre clinical trials they all work they are all efficient. When the real clinical trail starts however it turned to be no more effective than plcebo.
It is very commo scenario. What i am starting to think is that the money granted for this studies are just going to someone's pocket. No one care about helping us with T.

 

[Nucleo]

Very intersting in the pre clinical trials they all work they are all efficient. When the real clinical trail starts however it turned to be no more effective than plcebo.
It is very commo scenario. What i am starting to think is that the money granted for this studies are just going to someone's pocket. No one care about helping us with T.

Pre-clinical work is often done with animals. It's no wondering it never ends up working with humans - our auditory systems are very different in many ways.

 

[LadyDi]

Thanks for the follow up, @labrat10687. I had applied for the study but did not qualify. Maybe they can tweak it and it will be more effective, but maybe not. As I have said before, tinnitus is going to be a tough treatment nut to crack.

 

[BrStan@]

Very intersting in the pre clinical trials they all work they are all efficient. When the real clinical trail starts however it turned to be no more effective than plcebo.
It is very commo scenario. What i am starting to think is that the money granted for this studies are just going to someone's pocket. No one care about helping us with T.

Yes Nucleo i agree on that. But VNS was done on a small group of humans as far as i remember it was on 10 people. 4 of them had some reduction and the other 6 did not. The latest one did not have because they have been on on some meds which somehow stop the brain plasticity. Absolutely BS mate.

 

[dan]

Dan, If you would have been offered the therapy at no cost to you would you have done it?

Yup lol

 

[linearb]

It is very commo scenario. What i am starting to think is that the money granted for this studies are just going to someone's pocket. No one care about helping us with T.

Having directly interacted with a number of compassionate, interested researchers who are literally dedicating their professional lives to trying to understand and improve treatments for this condition, I assure you that you are mistaken.

 

[BrStan@]

Having directly interacted with a number of compassionate, interested researchers who are literally dedicating their professional lives to trying to understand and improve treatments for this condition, I assure you that you are mistaken.

I pray to be wrong .But when they are so dedicated what's their findings?

 

[Sjoerd]

I pray to be wrong .But when they are so dedicated what's their findings?

No actual results have been released....we have to wait. The resuls from @labrat10687 are dissapointing. But calling the research a bunch of asses that are just filling their pockets is way way over the line.

 

[Nucleo]

The reason I knew for the first 2 weeks we(30 of us)were either given either the sham therapy or the real one. After 2 weeks we were told if we got the sham treatment or not(I was given the sham therapy for only the first 2 weeks)then we all received the real therapy. I started my therapy in Feb and my last therapy was last Wednesday. My therapy did not work and we decided to end the therapy.

This doesn't seem to add up with the trial study website :

Detailed Description:

Patients who have moderate to severe tinnitus, at least one year post diagnosis, may enroll. All patients will be implanted and randomized to one of two groups:

• a group receiving VNS paired with tones and;
• a group that receives VNS and tones, but with different settings.

After device use training, therapy is delivered at home by the patient for 6 weeks. Patients have eight baseline audiometric assessments along with two questionnaire assessments, an assessment after recovery before treatment starts, and tinnitus assessments every two weeks during therapy through the 6 week randomized portion of the study. After the randomized portion, all patients receive VNS paired with tones. Patients will continue to return for quarterly visits and tinnitus assessments through the first year after implant, regardless of their therapy status. Interested patients can continue to receive longer-term treatment after the first year. A goal of up to 30 patients enrolled and implanted across four sites is planned for this study.​

 

[erik]

I will say that there is a group out tinnitus free mice and chinchillas out there thanks to VNS

 

[Sjoerd]

I will say that there is a group out tinnitus free mice and chinchillas out there thanks to VNS

View attachment 7499

The sad thing about research, like that of Kilgard with VNS, you might end up being wrong completely. To me that does not equal "money wasted".

 

[lost horizons]

Micro transponder is doing additional fund raising and is planning to roll out their product for tinnitus in europe in 2016. They claim that their treatment is promising.

 

[Sjoerd]

Micro transponder is doing additional fund raising and is planning to roll out their product for tinnitus in europe in 2016. They claim that their treatment is promising.

Uhm....lets see the results. I support them....about 10 whooping euro's a month..... Still would like to see the results.

 

[markoana]

Micro transponder is doing additional fund raising and is planning to roll out their product for tinnitus in europe in 2016. They claim that their treatment is promising.

Uhm....lets see the results. I support them....about 10 whooping euro's a month..... Still would like to see the results.

Looks to invasive... they cut your breast and neck, and put thing inside of u, than u need to listen some music for a weeks, and maybe just maybe u will have some % of relief...

 

[preslys]

It is expected that this treatement begins this month for the general public but as we see the clinical results are not even published

 

[snow86]

Looks to invasive... they cut your breast and neck, and put thing inside of u, than u need to listen some music for a weeks, and maybe just maybe u will have some % of relief...

Guess VNS is pretty busted for people with extreme T, who also have hyperacusis which prevents them from listening hours to some white noise...hmmm

 

[Sjoerd]

It is expected that this treatement begins this month for the general public but as we see the clinical results are not even published
View attachment 7575

Any source on that?

 

[BrStan@]

It is expected that this treatement begins this month for the general public but as we see the clinical results are not even published
View attachment 7575

This is a common practice as we already see something similar with AC Neuromodulation. They did not reveal their results when the independent study found it was not more effective then a placebo. Here is the some story we will not see the results due to the some reason.

 

[preslys]

Any source on that?

Four clinical trials of the system, funded by the National Institutes of Health, are taking place at US universities, and Kilgard thinks a consumer version could be approved by mid-2015.

https://www.newscientist.com/articl...implant-retrains-your-brain-to-stop-tinnitus/

 

[Sjoerd]

Four clinical trials of the system, funded by the National Institutes of Health, are taking place at US universities, and Kilgard thinks a consumer version could be approved by mid-2015.

https://www.newscientist.com/articl...implant-retrains-your-brain-to-stop-tinnitus/

Well, that is hardly a state that has any real meaning. basically it is a one year old prediction that it could be possible. This is by no means a press release about a commercial release of the product this month.

The study is not officially finisched.......just do not jump to conclusions......despite the fact Labrats results where...well...non existant.

I truly do not like the way poeple try to say: the research was negative but they will sell it anyway to get rich.