You might even have more options available before then, like Dr. Shore's device, if you are not approved by Lenire.
Lenire — Bimodal Stimulation Treatment by Neuromod
- Thread starter Tinnitus Talk
- Start date
I went back and rewatched the part of the Neuromod Q&A where Ross O'Neill talks about hearing loss.
Q: So you do actually have to have a certain level of hearing to qualify for the treatment?
A: Yes. So I mean, if you're profoundly deaf, if you're a patient that's a cochlear implant candidate, then our device in its current format, well, you're not a candidate for it. Because you have to have a certain level of hearing still available to stimulate the auditory system...
This really sounds like he's saying that the device can work for you as long as you have some hearing. That's how I took it, and how many others clearly took it as well. I really wish he would have elaborated further on this.
Q: So you do actually have to have a certain level of hearing to qualify for the treatment?
A: Yes. So I mean, if you're profoundly deaf, if you're a patient that's a cochlear implant candidate, then our device in its current format, well, you're not a candidate for it. Because you have to have a certain level of hearing still available to stimulate the auditory system...
This really sounds like he's saying that the device can work for you as long as you have some hearing. That's how I took it, and how many others clearly took it as well. I really wish he would have elaborated further on this.
FounderI have just now reached out to Neuromod to clarify the details about the hearing threshold requirements, as well as if there are any specific requirements from recent third-party audiograms (like in the case of @Cojackb where he didn't have to have an audiogram at their offices due to already having had one done recently). I hope to receive a response soon and copy it over here.
I can also say from our recent correspondence that Neuromod have agreed to be on the Tinnitus Talk Podcast for one of our next episodes. We will, as usual, ask you to submit questions before we record the episode (more on that later - we'll provide a special link to a form where you can submit questions).
If everything goes without a hitch, I could see the episode being out in late August / September. It will also be transcribed like all of our episodes.
As for the structure of the episode, I'd like there to be a Neuromod-specific segment for the Q&A, as well as one or two of our members talking about their experiences with the device. But if that becomes too much (too long), then we might do two separate episodes, one for the Q&A and one for user experiences.
EDIT/UPDATE
Received a response from Neuromod. They are preparing an answer and will send it to me next week.
I can also say from our recent correspondence that Neuromod have agreed to be on the Tinnitus Talk Podcast for one of our next episodes. We will, as usual, ask you to submit questions before we record the episode (more on that later - we'll provide a special link to a form where you can submit questions).
If everything goes without a hitch, I could see the episode being out in late August / September. It will also be transcribed like all of our episodes.
As for the structure of the episode, I'd like there to be a Neuromod-specific segment for the Q&A, as well as one or two of our members talking about their experiences with the device. But if that becomes too much (too long), then we might do two separate episodes, one for the Q&A and one for user experiences.
EDIT/UPDATE
Received a response from Neuromod. They are preparing an answer and will send it to me next week.
El BUZZ
Member
Smooth move!
Hope it helps stopping all the speculations 'round here with all the waste of energy, time and space.
I don't want to imagine the headaches for a newcomer finding this thread and having to go through all these posts with most of them rooted in mere paranoia.
Member- Dec 31, 2017
- 204
- Tinnitus Since
- Mild since 2006. Severe since 2016
- Cause of Tinnitus
- An enthusiastic youth
The hearing test I had there was a fair bit shorter than any other hearing test I've ever had. Principally this was because they didn't test conductive hearing, but even the main bit of the test was much shorter than others. She asked if I had a copy of my audiogram before doing the test - I'd intended taking a copy, but forgot.
I couldn't tell you what range they were testing. I have a mild / moderate high frequency impairment and wear hearing aids.
Could someone with the device on hand post a sound clip of the sounds being played by the device? Really curious how it sounds.
- Dec 31, 2017
- 204
- Tinnitus Since
- Mild since 2006. Severe since 2016
- Cause of Tinnitus
- An enthusiastic youth
Reading between the lines of your comments Nanny, I get the impression that they turned you down as they feel you might stand a better chance of reining your tinnitus in if you were to start wearing hearing aids.
Sound therapy is one of the main planks of current tinnitus management - basically if you have tinnitus and an aidable hearing impairment, hearing aids are usually the first option for any audiologist, without turning to more complex treatments like Lenire.
So why not explain that to her? And why not tell her that she could come back if the hearing aids are not helping?
- Dec 31, 2017
- 204
- Tinnitus Since
- Mild since 2006. Severe since 2016
- Cause of Tinnitus
- An enthusiastic youth
Sorry, yes, should have said - I was accepted. I was a bit concerned when the audiologist started waffling on about CBT, as I thought she was about to point me in that direction, but she eventually gave me the green light.
- Dec 31, 2017
- 204
- Tinnitus Since
- Mild since 2006. Severe since 2016
- Cause of Tinnitus
- An enthusiastic youth
I'd be willing to bet that she did, but based on my own discussion with the audiologist, she tended to go around the houses a bit when explaining things. Also, Nanny has said herself I think that she was a bit on edge with the stress of the day, so once they'd said they wouldn't recommend Lenire, I can imagine not much else will have registered.
@ruud1boy
The first line N.H.S option is hearing aids. I have painful psoriasis in my ears!
U.K. audiologists suggested trying hearing aids, ow, ouch, and this was written in my latest audiogram. Stupid me and absolutely why no option to return for a retest.
Disillusioned and much poorer of Torbay.
The first line N.H.S option is hearing aids. I have painful psoriasis in my ears!
U.K. audiologists suggested trying hearing aids, ow, ouch, and this was written in my latest audiogram. Stupid me and absolutely why no option to return for a retest.
Disillusioned and much poorer of Torbay.
That's a really interesting point and rings true with what I was told. Hearing loss won't necessarily exclude you from treatment, but if the audiologist felt you would benefit from hearing aids and you haven't tried them before, that might. My loss is so mild I wouldn't be recommended hearing aids, so it's not an option for me.
If anybody is looking for a job as an audiologist at Neuromod, they are hiring.
https://www.irishjobs.ie/Jobs/Audiologist-Tinnitus-Assessment-and-Treatment-8358439.aspx
https://www.irishjobs.ie/Jobs/Audiologist-Tinnitus-Assessment-and-Treatment-8358439.aspx
- May 22, 2019
- 257
- Tinnitus Since
- 01/2019
- Cause of Tinnitus
- NIHL & TMJ
Good to see they are looking to expand the Dublin operation.
I wonder if this means they are looking to introduce more appointments to the 2019 calendar?
To clarify... I said exclude you, but really what I was told was that you would be asked to try the thing they recommended and try again later with Neuromod if that didn't work. Unfortunately, you need to be reassessed if there is more than 3 months between assessment and device fitting.
In response to the poster enquiring about my hearing test at Neuromod (the post has been moved from the Lenire User Thread - sorry can't remember who was asking)! I am attaching a copy of a hearing test from 2013 done at Nottingham University:
I applied to go on the ACRN trial up in Nottingham but was turned down due to my tinnitus pitch being too high for their device to be programmed to.
I later went on to obtain hearing aids from the NHS. I didn't actually realise that I had a hearing problem prior to that but there is a sharp drop at about 8000 Hz.
My tinnitus is way above this level but wearing hearing aids, although they can't be programmed that high, do kind of 'smooth' the sharpest edges of tinnitus, probably by bringing in other surrounding frequencies. I don't pretend to understand all the reasons why. In no way do they eliminate or massively reduce the tinnitus, just take the edge off it a bit. For which I am grateful. However, I sometimes think that wearing hearing aids can bring problems of their own. I didn't have hyperacusis previously, but I do now. I often wonder if because I'm constantly hearing amplified sounds I have contributed to this problem... a case of 'you're damned if you do, damned if you don't'. I've tried to go without them for a few days but end up giving in as after about three days I find it very hard to function.
So, I don't know how my hearing test would compare to other people, such as Eve (@Nanny chocolate) as I wear them primarily for tinnitus. I felt that the hearing test was fairly short, compared with others I've had at NHS audiology appointments. Plus the tones were very quiet; there seemed to be fairly long gaps where I didn't hear much at all. Also the usual thing of 'is that a tone, or is that me??'... but I definitely was able to distinguish the tones. I didn't wear my hearing aids in the test, I'd already removed them a couple of hours before due to the noise in the hospital. The audiologist asked me if I had an audiogram with me. As it hadn't been mentioned to bring one along, I hadn't. But, in any case, the last one I had was a couple of years ago - not much different to the one I'm attaching from 2013 as I recall. I hope this is of some help, although not a scientific answer!
Hopefully, as time goes on and more statistics/evidence comes through, people who have been excluded due to their hearing profile or other reasons, may get the opportunity to try again if they want to.
Kind regards.
Liz
I applied to go on the ACRN trial up in Nottingham but was turned down due to my tinnitus pitch being too high for their device to be programmed to.
I later went on to obtain hearing aids from the NHS. I didn't actually realise that I had a hearing problem prior to that but there is a sharp drop at about 8000 Hz.
My tinnitus is way above this level but wearing hearing aids, although they can't be programmed that high, do kind of 'smooth' the sharpest edges of tinnitus, probably by bringing in other surrounding frequencies. I don't pretend to understand all the reasons why. In no way do they eliminate or massively reduce the tinnitus, just take the edge off it a bit. For which I am grateful. However, I sometimes think that wearing hearing aids can bring problems of their own. I didn't have hyperacusis previously, but I do now. I often wonder if because I'm constantly hearing amplified sounds I have contributed to this problem... a case of 'you're damned if you do, damned if you don't'. I've tried to go without them for a few days but end up giving in as after about three days I find it very hard to function.
So, I don't know how my hearing test would compare to other people, such as Eve (@Nanny chocolate) as I wear them primarily for tinnitus. I felt that the hearing test was fairly short, compared with others I've had at NHS audiology appointments. Plus the tones were very quiet; there seemed to be fairly long gaps where I didn't hear much at all. Also the usual thing of 'is that a tone, or is that me??'... but I definitely was able to distinguish the tones. I didn't wear my hearing aids in the test, I'd already removed them a couple of hours before due to the noise in the hospital. The audiologist asked me if I had an audiogram with me. As it hadn't been mentioned to bring one along, I hadn't. But, in any case, the last one I had was a couple of years ago - not much different to the one I'm attaching from 2013 as I recall. I hope this is of some help, although not a scientific answer!
Hopefully, as time goes on and more statistics/evidence comes through, people who have been excluded due to their hearing profile or other reasons, may get the opportunity to try again if they want to.
Kind regards.
Liz
Wow they tested up to 20 kHz? You don't see that everyday. Technically based on the 8 kHz scale you have mild hearing loss at higher frequencies.
It shouldn't disqualify you.
It looks like this Lenire device is for people with mild tinnitus and mild hearing loss. For tinnitus that will improve even without treatment. For all of us with severe tinnitus there is no chance.
Thank you Neuromod for the treatment you can't give to the people that need it most. At least some of us will get it later off label.
Thank you Neuromod for the treatment you can't give to the people that need it most. At least some of us will get it later off label.
Nope. People with severe tinnitus can use it.
As mentioned above, people with moderate hearing loss got in....
What we are learning here is that treatment needs to be taken on a case by case basis. Blanket statements like this aren't helping anybody.
- Dec 31, 2017
- 204
- Tinnitus Since
- Mild since 2006. Severe since 2016
- Cause of Tinnitus
- An enthusiastic youth
With all due respect Stan, you don't know that. Sweeping statements like this can easily be misinterpreted as FACT, especially by users for whom English might not be their first language.
My tinnitus fluctuates between moderate and severe, I have a moderate high frequency hearing impairment and I've been accepted. Where do I fit in your final, definitive assessment of this treatment?
@Liz Windsor
Hi Liz. I'm really pleased for you that you can go ahead with Lenire. I agree with you that it was a much shorter hearing test. Your hearing is probably better than mine, I'm 70! How did that happen!
I thought there were a lot of gaps too and perhaps pressed for my tinnitus noise, don't know.
It would be helpful to have a longer assessment time IMO so that more questions could be asked and answered more fully.
As you saw they are a small team at present and I suspect under pressure with the amount of time available.
We are supposed to try to reduce our attention to tinnitus but at the moment most of my thoughts are focused on EARS, HEARING LOSS and TINNITUS.
I've been to Dublin before and it's lovely. How about a Group meet for some Guinness and a bit of Irish dancing to take our minds off tinnitus!
Hi Liz. I'm really pleased for you that you can go ahead with Lenire. I agree with you that it was a much shorter hearing test. Your hearing is probably better than mine, I'm 70! How did that happen!
I thought there were a lot of gaps too and perhaps pressed for my tinnitus noise, don't know.
It would be helpful to have a longer assessment time IMO so that more questions could be asked and answered more fully.
As you saw they are a small team at present and I suspect under pressure with the amount of time available.
We are supposed to try to reduce our attention to tinnitus but at the moment most of my thoughts are focused on EARS, HEARING LOSS and TINNITUS.
I've been to Dublin before and it's lovely. How about a Group meet for some Guinness and a bit of Irish dancing to take our minds off tinnitus!
I don't know where you will fit. But what I can see here is one person has been rejected because of having moderate hearing loss. My hearing is declining at 4 kHz and at 8 kHz is -70 dB.
How can I stay positive in this case?
Back again! I think Caroline, the Neuromod audiologist, believed that my tinnitus could be reduced by hearing aids. My daughter sat in but we are both certain that I was told I couldn't be retested if I got hearing aids.
Don't despair people, they are a caring team and want to help you.
It's a bit of a daunting experience so if you can have a travel companion that could help.
Eve
Don't despair people, they are a caring team and want to help you.
It's a bit of a daunting experience so if you can have a travel companion that could help.
Eve
El BUZZ
Member
Come on guys! Keep flooding the thread with posts created from unsubstantiated paranoia highly prone to create even more unfounded paranoia. Why being cold minded, sober and patient if we can throw up all our preposterous assumptions here for free?
If we had to pay to post here this thread would be much cleaner, sane and useful.
If we had to pay to post here this thread would be much cleaner, sane and useful.
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