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British Tinnitus Association
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neuromod device

HI guys just finished watching the Q@A with the ceo from the company it looks very much like results have been very encouraging its to be rolled out in Ireland in 2019 not to far away now just a shame they could not put a price on it as yet, they did say it should be available through the NHS as well as being purchased , Its looking like we may have a belated Christmas present to challenge the dreaded "T" fingers crossed.

All the very best for the festive season you lot.

Good luck Sammie.

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Just for the sake of clarity, they indicated they were hoping it would be available via the health service, not that it should or would be. My hopes for this device are already skyrocketing, but I wouldn't want people to get overly optimistic, me included. When they start selling it, it'll probably be in the £3-4k range.

It might end up as being available on the NHS in the fullness of time, but I wouldn't hold your breath.

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HI Ruud1boy.

People have to have some hope that one day these clever people will conquer this dreadful problem, by dismissing something before it has been tried is not very helpful to fellow sufferers, considering that millions in this country alone suffer it is 99.9% guaranteed that it will become available through the NHS eventually as for the 3 to 4k this is pure guesswork lets wait and see and hope they carry on there great work, I for one am eternally grateful to these people.

All the best Sammie.

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Well said we need to have a glimmer of hope. Can you send a link if possible so I can have a look? Tried Mr Google, but didn’t really get much + plus I’m trying to sort out a party for over 40 people tomorrow night and my t has gone through the roof 😭

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Hi Buddie this is how I found it = (Q@A: tinnitus hub meets neuromod (mute button) then go to page 1.

All the best Sammie.

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Hi Sammie

I'm not dismissing this at all, not sure how you've taken that message from my post. I'm quite the opposite in fact, I'm investing a lot of hope & faith that this thing is going to be effective.

Re the NHS, as I said, it might well be available via that route, but I suspect that will be a long, long way down the road, if it ever happens at all. The NHS don't currently consider tinnitus to be a serious problem - I would imagine this treatment would be on a par to something like cosmetic surgery if it ever is made available via public funding.

My £3-4k estimate is a guess, you're right. But, this company have invested a lot of money in this product and process and they are in it to turn a profit. Also, in 2015 they were actually selling the forerunner to this device, at a cost of c.3k euros - they withdrew it from sale when they realised it wasn't working as well as they were claiming. 4yrs more investment and testing later, I would think it unlikely they'd sell the new & updated version for less.

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Sounds promising, if it works I for one will be at the front of the queue whatever the cost. Would love silence if only for an hour a day.

Keep us posted.

Merry Christmas to you and bring on 2019 xx

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I totally agree Ingrid! I will be second in the queue Xxx

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neuromoddevices.com/

They're being very careful to avoid saying this is a 'cure'. It isn't.

They've done a large scale trial and there are testimonials on their website from people who participated. They're currently having the results of the trial being peer reviewed and they're being a bit cagey about releasing hard facts ahead of this.

As such, it's sensible to not pin all our hopes on this - it might turn out to be pretty useless - but the hype around it is building. I appreciate I'm probably adding to the hype by posts like this, but what the heck, it's Christmas.

They've said c.80% of trial participants have seen 'some improvement' in their tinnitus after using the device. Then - 2/3rds of people saw 'clinically significant' improvement. They haven't defined 'clinically significant' yet and also, I might have missed this, but I haven't figured out whether they mean 2/3rds of the overall number of people in the trial, or 2/3rds of the 80% who saw an improvement - my guess is that it'll be the latter, which would be around half the total amount of participants.

Either way, I suspect a lot of people are going to be trying to throw money at them in 2019 - me included.

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Ruud,

Apologies if I missed this answer somewhere else. Is this the same method Susan Shore is trialing in Michigan?....I read a bit about that one. Early findings seemed to suggest, her trials were geared and were of most benefit to somatic T sufferers....which is what I think I may have, from the neck.

I know very little about the Ireland trials so cheers for enlightening us....it may work, it may not but it's something new at least.

Cheers,

S

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Somatic T, as far as I understand it, is where you can influence the sound of your T by moving something - turning your neck, clenching your jaw, squeezing your eyes tight shut, that sort of thing.

This Neuromod thing works on the same principle as the Susan Shore device - bi-modal stimulation. They plan targeted tones into your ears, thereby stimulating the auditory nerve, and then stimulate something else to induce neural plasticity and effectively rewire your brain to lessen the T signal. The Uni of Michigan / Susan Shore device uses electrodes stuck to the neck & head whilst the Neuromod device has electrodes placed on the tongue. There's another team working on something similar, at the University of Minnesota.

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Cheers for that, listened to some of the Neuromod participants reviews on it, sounds quite promising........

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I hope it comes to United States

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Hi Freddy I live in Australia , i emailed the company , they aren’t doing any distributing outside of Europe at this stage, but it doesn’t mean at all, which is good news

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This seems like it could work. At least they understand T and it's origins. Could I get the same affect from an electric toothbrush?

Hell, I'll try this.

Curious what Dr Stephen Cheung(UCSF)would have to say about this.

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Hi Sammie ... this is great news. I live in Australia and I have had contact with a very well known professor in Sydney and she said there is a lot of research being done so we live in hope! When you say they are getting close to finding something, do you mean a hearing aid or is it medication? I already have a Cochlear Implant so it may not help me.... but I’m very interested to hear the outcome ... I would even come to Ireland if it meant an end to the Tinnitus! I live in hope and am optimistic about the future. All the best Sammie .. take care, Jenny 🌷🌷

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1Dar- HI Jenny the Q@A session included a question about cochlear implants and the answer is yes it can be used with implants they are actually head phones so you wont have a problem this is the company who have developed this device = Neuromod devices ltd, Ireland you can possible google it.

All the very best.

Sammie.

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Thanks Sammie ... in between you writing back to me , I read your message again and realised it wasn’t medication. You are very encouraging... even a slight glimmer of hope is great. Take care 🌞

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I actually emailed the company and they told me they are not processing any devices outside of Europe at this stage. If anyone needs to contact them , I have their website address. I’m due for an overseas holiday!!,,

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Thats sad but as you say you need a holiday so why not possible have a cure at the same time.

All the best.

Sammie

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Hi Sammie , had a really bad day today , it seems to get high when I’m in the car for a long stretch of time. I emailed that company , they are away until the 3rd January. Are you going to make some enquiries what they can offer.. it seems to be the only thing on offer at the moment. Hope all is good with you ... 😊. Jenny

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Hi Jenny, this time of the year seems to be a problem with most sufferers I think it may be due to the extra pressure and stress put upon us with Christmas inducing spikes. I will be contacting the company in the new year to find out there release date for the device cost and availability as they said it will be 2019, as for your dreaded "T" getting worse when your driving you may have to get yourself a cycle (ha ha) hope you have a good peaceful Christmas and lets hope we all have a great quiet new year.

All the best Sammie.

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Ha ... yes I could do with the exercise, the kilos are creeping on!, and with Christmas tomorrow ... mmmmmm! You have been so encouraging and positive , thank you. Would you mind if I messaged you privately? I have been doing that with Angela and Ingrid and it’s nice just to chat. Merry Xmas to you.. I think you are in England? I’m just off to the beach! Take care and yes 2019 will be a good year😊😊

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Hi Jenny. just off to the beach you lucky devil, yes I don't have a problem with you messaging me the only thing being is I am not a wizard on the PC so not sure how to do it, do I just send you my e-mail address? if so not a problem, how is it with you its very cold icy with frost here, still it helps add to the atmosphere of Christmas , make sure you put plenty of sun cream on and enjoy the beach ( jealous as hell) enjoy the festive break.

All the best Sammie.

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Hi Sammie .... hope you had a great Christmas! Yes ... I put plenty of sun tan lotion on, but my skin specialist doesn’t think so! I’m a bit of a beach person. I would really like to chat with you through email. So if you could send me your email address that would be great. Struggling the last few days, but as you said it is the festive season which can be stressful. Cheers Jenny 😊😊😊😊

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Hi Sammie, happy New Year to you, here’s hoping 2019 is a good one. Just some feedback for you and any others that may be interested to hear about the Neuromod Devices in Ireland. At this stage they are not looking at devices for those who do have Cochlear implants , but they are looking into it with ENT s from all over the world. So it’s good and bad news. I felt that might be the case. I’ve been making a huge effort not to let my T get to me, it’s hard , I constantly have an ear phone in my ear and I’ve given up wine, so will see what happens! Not sure how long the giving up wine will last🌞 I hope you and everyone out there are going well and keeping calm and positive. It’s all we can do. Jen 🌞🌞🌞🌞🌞

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