Where do you live?Guys, if it becomes available in the US only, I'll let you stay at my house for your appointment.
Great, thanks, I'll take advantage of that. If the device helps, you can come to Oktoberfest with us, I live 20 minutes from Munich. You'll get 16 days of food and drinks for free from me. Then you have to place the electrodes of the device on your liverI will offer the same. Free room and board for as long as it takes. I live near Seattle.
My pleasure my friend.Great, thanks, I'll take advantage of that. If the device helps, you can come to Oktoberfest with us, I live 20 minutes from Munich. You'll get 16 days of food and drinks for free from me. Then you have to place the electrodes of the device on your liver
Yep, so far most "experts" only measure emotional reaction to tinnitus instead of the tinnitus itself. Imagine if that was the way we treat cancer.Just came here to say that whenever you wonder if Dr. Shore's device works or not, remember that we have never had a device which is based on pure science and is developed by a legit scientist who has scientifically proven that her magic lowers tinnitus objectively.
Some of us are in both groups simultaneously. I have a narrowband sound related to my TMJ that I can modulate, but I have multiple broadband sounds from an acoustic trauma that I can't modulate. I submitted a question to Dr. Shore Q&A that wasn't answered asking if tinnitus is fundamentally just one thing. If it's all just fusiform cells firing, then it shouldn't matter.I can't wait to try this device. But OMG it would be heartbreaking to be in the group for whom it doesn't do anything positive.
This is the only realistic treatment in the near <3 year timeline.
I'm too drained to read through all the results again but is the consensus that there is a group of people for which the treatment didn't work? How do we know that everyone didn't benefit at least a little bit? Nobody here has the "by person" individual results...I can't wait to try this device. But OMG it would be heartbreaking to be in the group for whom it doesn't do anything positive.
This is the only realistic treatment in the near <3 year timeline.
I'm going to get a cochlear implant in that case, I don't care my having no hearing loss or what anyone on Tinnitus Talk says is an appropriate or inappropriate way to treat tinnitus.I can't wait to try this device. But OMG it would be heartbreaking to be in the group for whom it doesn't do anything positive.
My older brother had a cochlear implant put in on his right ear which was completely deaf (with tinnitus) after a scuba diving mishap.I'm going to get a cochlear implant in that case, I don't care my having no hearing loss or what anyone on Tinnitus Talk says is an appropriate or inappropriate way to treat tinnitus.
OK, here is one section of the second study that speaks in part (although not directly) to your question. They state that "Decreases in tinnitus loudness level ... correlated significantly with the TFI score decrements." They also state that a decrease in TFI score of more than 13 points was considered clinically significant. One might guess (but it's not specifically stated) there were participants who did show a smaller decrease in both TFI score and corollary loudness level.I'm too drained to read through all the results again but is the consensus that there is a group of people for which the treatment didn't work? How do we know that everyone didn't benefit at least a little bit? Nobody here has the "by person" individual results...
Another salient section discusses ITT (The Intention-To-Treat, i.e., every participant randomized to receive the clinical treatment) and PP (per-protocol, i.e., patients were fully compliant, optimal treatment achieved). Here, during washout phase TFI score continued to decline. What is not stated is whether those patients who did not achieve reduction of 13 points on TFI also continued to decline or even had any decline. Again, I'll guess -- just a guess -- this may have been the case. But, I didn't see anything in the study that spoke directly to that point. However, the report does state, "Changes in overall (emphasis mine) TFI scores in PP population." If that is the mean reduction, as I think is implied, then it includes all PP patients (those who fully complied with protocol). So, logic dictates (as Spock might say) that since 65% of patients showed at least 13 points reduction in TFI, some patients achieved more than 13 points reduction and other patients achieved less. Please, correct me if I'm wrong on that.The clinically significant decreases in TFI score (>13 points) and THI score (>5 points) continued beyond the 6-week treatment duration and did not return to baseline during the 6-week washout but rather continued to decrease during the washout phase. Decreases in tinnitus loudness level showed the same pattern over time and correlated significantly with the TFI score decrements. The responder analysis showed that more than 65% of the PP population and more than 55% of the ITT population who received bisensory treatments had TFI score reductions that were clinically significant (13 points decrease from baseline) and remained constant during the active washout phase. Follow-up TFI questionnaires indicated an effect lasting up to 36 weeks. In all cases, the bisensory treatment showed a significantly greater effect compared with the auditoryonly treatment, which showed slight decreases that were not clinically significant.
Also, it's worth pointing out:The active but not the control treatment resulted in clinically significant decreases in TFI scores at week 6 of phase 1(ITT population: –12.0 [95% CI,
–16.9 to –7.9] points; P < .001; PP population: –13.2 [95% CI, –16.0 to –10.5 points; P < .001). While both the auditory-only and the bisensory treatments resulted in decreases in TFI scores, the bisensory treatment effect was significantly greater than that produced by the auditory-only treatment at week 6 of phase 1 (ITT population: –4.3 points [P < .001]; PP population: –6.8 points [P < .001]). Furthermore, the bisensory treatment resulted in TFI score reductions from baseline to 6 or 12 weeks, a difference that was greater than the minimal clinically important difference in TFI score of 13 points and that continued to decline during week 12 of the washout phase 2 for both the ITT (4.9 points; P = .002) and PP (–9.0 points; P < .001) populations.
49 Active treatment first
12 Discontinued intervention
3 Unavailable 3 Became ineligible 3 Worse tinnitus 2 No benefit 1 Unblinded 7 Unable to complete all in-person visits due to COVID-19 lockdown
30 Included in PP analysis
Just wait for electrical stimulation of the ear to be developed before doing something like that.I'm going to get a cochlear implant in that case, I don't care my having no hearing loss or what anyone on Tinnitus Talk says is an appropriate or inappropriate way to treat tinnitus.
@Watasha, I just want to go on record as saying I agree with you. I believe the electrical stimulation is the answer to our problems.Just wait for electrical stimulation of the ear to be developed before doing something like that.
And how long will that be?Just wait for electrical stimulation of the ear to be developed before doing something like that.
There's no way to tell. I'd guess under a decade. Would be nice to know if the microchip they were developing is promising.And how long will that be?
There are two doctors working on slightly different approaches to this. Sounds to me like they are 3-6 years away. Dr. Carlson is at Mayo Minnesota and Dr. Djalilian is at UC Irvine. There is a separate thread on this subject on Tinnitus Talk.And how long will that be?
It is promising. I read the pilot studies on the thread.Would be nice to know if the microchip they were developing is promising.
Well, it's a good thing that you said that out loud. Maybe even more important is that there's no group that the device does something negative.I can't wait to try this device. But OMG it would be heartbreaking to be in the group for whom it doesn't do anything positive.
This is the only realistic treatment in the near <3 year timeline.
I thought a couple dropped out due to worsening.Maybe even more important is that there's no group that the device does something negative.
Can you link the thread, for me, please?There are two doctors working on slightly different approaches to this. Sounds to me like they are 3-6 years away. Dr. Carlson is at Mayo Minnesota and Dr. Djalilian is at UC Irvine. There is a separate thread on this subject on Tinnitus Talk.
The study, Reversing Synchronized Brain Circuits Using Targeted Auditory-Somatosensory Stimulation to Treat Phantom Percepts A Randomized Clinical Trial, stated 3 people showed worsening:I thought a couple dropped out due to worsening.
49 Active treatment first
12 Discontinued intervention
3 Unavailable
3 Became ineligible
3 Worse tinnitus
2 No benefit
1 Unblinded
7 Unable to complete all in-person visits due to COVID-19 lockdown
30 Included in PP analysis
Dr. Djalilian has one of the most promising lines of research besides Dr. Shore. I hadn't heard of the work being done at Mayo Clinic in Minnesota. I'll look up Dr. Carlson's work. Thank you for that!There are two doctors working on slightly different approaches to this. Sounds to me like they are 3-6 years away. Dr. Carlson is at Mayo Minnesota and Dr. Djalilian is at UC Irvine. There is a separate thread on this subject on Tinnitus Talk.
Yeah, correct. She didn't present anything new there or at the symposium we all didn't already know about (I had confirmed this with her earlier).Also, it looks like Dr. Shore spoke in France on September 8th and 9th and nobody made any mention of it (that I saw!). That was a little disconcerting. I can only think that she had nothing new to say in that conference!
Do you mean 3-6 years away from clinical trials or actually available to us all?There are two doctors working on slightly different approaches to this. Sounds to me like they are 3-6 years away. Dr. Carlson is at Mayo Minnesota and Dr. Djalilian is at UC Irvine. There is a separate thread on this subject on Tinnitus Talk.
Great! Thanks for confirming that, @Markku!Yeah, correct. She didn't present anything new there or at the symposium that we all didn't already know about (I had confirmed this with her earlier).
Great. Another ten years, give or take, down the drain.Just wait for electrical stimulation of the ear to be developed before doing something like that.
I read in the Q and A that Dr. Shore could only attribute one case of worsening "possibly" to the treatment... I think in the other cases other stuff had happened.I thought a couple dropped out due to worsening.
I meant "available to us." Both doctors have ongoing trials at present. Of course, that is speculation on my part.Do you mean 3-6 years away from clinical trials or actually available to us all?