How Important Is Early, Fast Treatment?

Discussion in 'Support' started by SecretDoubleCat, Mar 16, 2019.

    1. SecretDoubleCat

      SecretDoubleCat Member

      Tinnitus Since:
      2019
      Cause of Tinnitus:
      History of attending concerts; one night of THC toxicity
      I have an appointment with an ENT who specializes in tinnitus. I won't get to see him for about two weeks, which is to say one month after the onset of my tinnitus. Is that too late? Or is this a good schedule?

      Guys and gals, please keep in mind that I'm really anxious. I ask you to share what you feel I need to know in a kind, caring fashion.
       
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    2. GSC
      Wishful

      GSC Member Hall of Fame

      Tinnitus Since:
      02/2019
      Cause of Tinnitus:
      Acoustic trauma.
      Could probably be late for prednisone. But you might be able to get a steriod ear injection if you show hearing loss on your audiogram.
       
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    3. threefirefour
      Peeping tom

      threefirefour Member Benefactor Hall of Fame

      Location:
      California
      Tinnitus Since:
      5/15/16
      Cause of Tinnitus:
      140dB B R U H moment
      extremely
       
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    4. Tanni
      Heartbroken

      Tanni Member Benefactor

      Tinnitus Since:
      October 2017
      Cause of Tinnitus:
      ???
      I was given Prednisone at about the 5 week mark, so you should be fine. I think they prescribe it up to two months after the onset.

      You're doing the right thing by seeing a specialist early on, so try not to worry. Write down any questions you may have, so that you don't forget them when you get in there.

      When you first notice you have Tinnitus, it tends to send you into panic mode - it certainly did with me! And this, as anyone will tell you, makes Tinnitus sound louder. So try to stay calm and remember that it won't stay at this level. In fact, it's very likely that it will fade away completely. This is the experience for most people.

      Come back after you've seen the specialist and let us know how it went. Good luck! :)
       
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    5. Amv

      Amv Member

      Tinnitus Since:
      16/7/2017
      Cause of Tinnitus:
      -
      It's better to take action as soon as possible , better one month than never!
       
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    6. OnceUponaTime
      Busy

      OnceUponaTime Member Podcast Patron Benefactor Hall of Fame Advocate

      Location:
      New York
      Tinnitus Since:
      11/11
      Cause of Tinnitus:
      Noise
      VERY
       
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    7. Eric N

      Eric N Member Benefactor

      Location:
      Montreal QC Canada
      Tinnitus Since:
      10/2012, 03/2016, 05/2017, 05/2018
      Cause of Tinnitus:
      noise + 3 major increases via (shouting / MRI/ flu+Tylenol)
      Keep in mind that nothing is proven to work early or not, so any action is more like a gamble.
       
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    8. AUTHOR
      AUTHOR
      SecretDoubleCat

      SecretDoubleCat Member

      Tinnitus Since:
      2019
      Cause of Tinnitus:
      History of attending concerts; one night of THC toxicity
      Fuck. Hi? Everyone? Help? I don't. I am freaking out. Nothing I looked into pointed tot hat? I... I don't know. I went to the ENT and the audiogram showed no hearing loss. They then recommended me for the better, Tinnitus ENT but that was going to take more time. Please help
       
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    9. AUTHOR
      AUTHOR
      SecretDoubleCat

      SecretDoubleCat Member

      Tinnitus Since:
      2019
      Cause of Tinnitus:
      History of attending concerts; one night of THC toxicity
      I just did a bunch of search on prednisone and it seems like half the people say it did nothing and the other half the people say it might do nothing so everyone chill
       
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    10. JohnAdams
      Festive

      JohnAdams Member Benefactor Hall of Fame

      Location:
      Vatican
      Tinnitus Since:
      May 1st 2018
      Cause of Tinnitus:
      Aspirin Toxicity/Possibly Noise
      I initially did oral steroids, they did nothing.
       
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    11. JohnAdams
      Festive

      JohnAdams Member Benefactor Hall of Fame

      Location:
      Vatican
      Tinnitus Since:
      May 1st 2018
      Cause of Tinnitus:
      Aspirin Toxicity/Possibly Noise
      Keep in mind you're absolutely wrong. Dexamethasone and IGF-1 have been shown in human clinical trials to be very effective in SSHL.
       
    12. Ed209

      Ed209 Member Podcast Patron Benefactor Ambassador Hall of Fame

      Tinnitus Since:
      07/2015
      First of all your priority has to be to calm yourself down. I know this is pretty much impossible when your fight or flight response is going crazy, but you have to try. Take some deep breaths and take a hot bath or do something else to relax. Once your thoughts become obsessed with the sound it can become a vicious cycle, so try to break this pattern early. Don’t sit around ruminating; keep busy and occupy your mind with tasks that require critical thinking. If you like games, try playing chess. I find the depth of thought involved in playing that can disrupt how I interpret my tinnitus, but you must first relax your central nervous system. This may take time so don’t rush yourself and don’t listen for it or obsess about it. The more you think about it the more you’ll feed it.

      If you’ll feeling down feel free to PM me.
       
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    13. Tanni
      Heartbroken

      Tanni Member Benefactor

      Tinnitus Since:
      October 2017
      Cause of Tinnitus:
      ???
      Yeah, same with me.
       
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    14. Bam

      Bam Member Benefactor Hall of Fame

      Tinnitus Since:
      10/2017
      Cause of Tinnitus:
      Neck/stress
      Very hard this though let’s be honest. If I could travel back in time I would have filled myself with anti anxiety drugs. I mean bucket loads of the stuff and prayed my brain just unhitched the sound before it buried itself in deep.
       
    15. Eric N

      Eric N Member Benefactor

      Location:
      Montreal QC Canada
      Tinnitus Since:
      10/2012, 03/2016, 05/2017, 05/2018
      Cause of Tinnitus:
      noise + 3 major increases via (shouting / MRI/ flu+Tylenol)
      I meant for noise induced tinnitus.
       
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    16. Ed209

      Ed209 Member Podcast Patron Benefactor Ambassador Hall of Fame

      Tinnitus Since:
      07/2015
      My life has been plagued with incredibly difficult times which I believe has given me a mindset to deal with extreme health issues. No two people are the same, but, the way we present a situation to our mind has an incredibly powerful impact on our emotional wellbeing. If you convince yourself that your life is over then your thoughts will ultimately oblige this by driving your endocrine system to deliver the feelings to go with those thoughts. Never underestimate how powerful this effect is.

      @SecretDoubleCat, talk to close friends and family members and get support now before your anxiety cripples you. It’s a slippery slope but you can ultimately come through this and there is no time worse than the period you are in: immediately after onset. There are many members here who are doing well, however, don’t read too much or you’ll just take on everybody else’s problems and this will add to your burden.
       
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    17. Bam

      Bam Member Benefactor Hall of Fame

      Tinnitus Since:
      10/2017
      Cause of Tinnitus:
      Neck/stress
      The only way anybody is not going to flip their shit when they get this, is if a cure is found and offered by doctors from the get go. Until then it’s going to be a harrowing and terrifying experience for anyone being hit with this out of the blue.That’s the unfortunate truth. And telling someone to calm down only makes them panic more. @SecretDoubleCat trust me, take the drugs. Put yourself in a state where you barely know who you are anymore and then pray like hell.
       
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    18. JohnAdams
      Festive

      JohnAdams Member Benefactor Hall of Fame

      Location:
      Vatican
      Tinnitus Since:
      May 1st 2018
      Cause of Tinnitus:
      Aspirin Toxicity/Possibly Noise
      Have you even read the studies I'm referring to? That includes noise induced hearing loss.

      "The application of IGF-1 maintains hair cell number of postnatal mammalian cochleae after various kinds of ototoxicity including aminoglycoside treatment, noise exposure, and ischemia. The positive effects of IGF1 on hair cell damage have been confirmed with in vivo animal experiments; hearing recovery in patients with sudden sensorineural hearing loss refractory to systemic glucocorticoid treatment has also been shown to occur following IGF1 treatment."

      "Patients (n = 120) were recruited from nine tertiary referral hospitals in Japan and were randomly selected to receive either gelatin hydrogel impregnated with IGF1 on the round window membrane (62 patients) or intra-tympanic injections with Dex (58 patients)."

      "In the IGF1 group, 66.7% (95% CI, 52.9–78.6%) of the patients showed hearing improvement compared to 53.6% (95% CI, 39.7–67.0%) of the patients in the Dex group."

      "A trend, however, was observed: a higher proportion of patients with ≥30 dB HL improvements in pure-tone average hearing thresholds was measured for the IGF1 group than in that the intra-tympanic steroids group."


      Source:
      Insulin-like growth factor 1: A novel treatment for the protection or regeneration of cochlear hair cells
      Author links open overlay panelKoheiYamaharaNorioYamamotoTakayukiNakagawaJuichiIto


      IGF-1 is not approved for human use yet, but I believe dexamethasone is though.
       
      Last edited: Mar 16, 2019
    19. Tinniger

      Tinniger Member Benefactor

      Location:
      Germany
      Tinnitus Since:
      06/2017
      Cause of Tinnitus:
      increasingly uncertain, maybe noise, maybe somatic ?
      My opinion:
      If at all, cortisone makes sense within a few days after a concrete acoustic trauma (explosion, gun-shot near the ear), but evidence is unclear for this as well...
      For all other forms of tinnitus causes, a visit by an ENT doctor is usually useless.
       
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    20. AUTHOR
      AUTHOR
      SecretDoubleCat

      SecretDoubleCat Member

      Tinnitus Since:
      2019
      Cause of Tinnitus:
      History of attending concerts; one night of THC toxicity
      I think bam said something like take the drugs—- I’m assuming he was referring to use my anti anxiety meds?
       
    21. Contrast
      No Mood

      Contrast Member Benefactor Hall of Fame

      Location:
      Clown World
      Tinnitus Since:
      late 2017
      Cause of Tinnitus:
      noise injury
      Hello. Recent research indicates that hearing test used at most audiology clinics and ENTs are inaccurate, they only test for hearing loss within the human voice range, learn more here about hidden hearing loss and how hearing speech in noise and music processing is not tested on standard hearing test.

      http://hyperacusisfocus.org/innerear/

      upload_2018-12-7_17-10-50-png.png

      entma18-plack_fig-2-new-png.png

      https://www.sciencedirect.com/science/article/pii/S0378595516302507
       
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    22. Contrast
      No Mood

      Contrast Member Benefactor Hall of Fame

      Location:
      Clown World
      Tinnitus Since:
      late 2017
      Cause of Tinnitus:
      noise injury
      Take magnesium too. Please.
       
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    23. Aaron123

      Aaron123 Member

      Tinnitus Since:
      00/0000
      Cause of Tinnitus:
      Irrelevant
      I'm not aware of any studies showing that anything is "very effective" for SSHL. Even the evidence for steroids is mixed. Thanks for posting the specific paper. Reading it and others, IGF-1 looks like it may have some promise, but the paper you cite does not prove it is "very effective" - nor do any others that I have found. Regarding the cited paper:

      For the primary outcome: "The primary outcome was the proportion of patients showing hearing improvement (10 dB or greater in puretone average hearing thresholds) at 8 weeks after treatment. In the Dex group, 53.6% (95% CI, 39.7–67.0%) of patients showed hearing improvement at 8 weeks after treatment, whereas in the IGF-1 group, 66.7% (95% CI, 52.9–78.6%) of patients showed hearing improvement (Table 4). The null hypothesis for the primary outcome was not rejected (P = 0.109). However, a trend was observed in the higher proportion of patients in the IGF-1 group showing complete or marked recovery (30 dB or greater in pure-tone average hearing thresholds) over that in the Dex group (Table 2)." (emphasis added)

      So there was no overall effect. Now the part about the "complete or marked" recovery is interesting. Table 2 does not show this. It's really not clear what they intended. Table 4 shows that 12/53 on Dex had complete or marked recovery compared to 16/53 for IGF-1. But they don't provide any test information. Given that the difference between 29/53 and 36/53 was not significant, it seems unlikely the difference between 12 and 16 is. Maybe they meant figure 2. But it doesn't show it either. It does show a divergent trend, but that is always < 10 dB which is the usual definition of clinically significant. So the average difference is not clinically significant even if it is statistically significant. None of the other outcomes show a significant difference. So, it is a promising statement that doesn't seem to be supported by any of the tables/figures in the paper

      It does appear to have a better safety profile though that is also a bit weird given that they say: "However, topical IGF-1 therapy requires surgical procedures and causes uncomfortable symptoms associated with the local application." Given that, IGF-1 seems riskier. Particularly since "In addition, spontaneous recovery of hearing occurs in 30 to 60% of patients with SSHL [5,26-28]." This is the big issue with showing anything is effective for SSHL. It typically has unknown eitology, which makes knowing the right treatment hard, and frequently resolves (at least partially) on its own.

      Regarding the surgical procedure: "After tympanostomy under local anesthesia with 1% lidocaine, the hydrogel (which contained 300 μg of mecasermin) was placed in the round window niche of the middle ear; a single application was used." So this is not an injection. This also raises the issue that while the patients are randomized, it is not placebo controlled. (it's also somewhat surprising they got good hearing results after ear surgery.)

      It's also the case that there was a surprising statistical difference in aural fullness in favor of the IGF-1 group. If aural fullness is some symptom of damage, the Dex group may be worse of in some ways not otherwise measured. While no where near significant, the pattern of pre-baseline improvement also favored IGF-1.

      I also wonder about the patient selection. To be eligible, steroids had to be unsuccessful: "they showed less than 30 dB hearing improvement in the mean hearing level, based on pure-tone audiometry (PTA) at five tested frequencies (0.25 kHz, 0.5 kHz, 1.0 kHz, 2.0 kHz, and 4.0 kHz) after more than 7 days of systemic corticosteroid treatment." So, though it wasn't IT steroids, oral steroids had already proved somewhat ineffective for this group. This may mean that even It steroids are more likely to be ineffective (and remember anyone who was helped by systemic steroids is not eligible for the trial.

      Finally, here's the authors' conclusion: "We performed a randomized, controlled clinical trial of topical IGF-1 therapy in patients with SSHL refractory to systemic corticosteroids and compared this treatment to intratympanic corticosteroid therapy. Present results suggest the possibility that IGF-1 is superior to intratympanic Dex therapy, but the current study design failed to confirm this possibility. The positive effect of topical IGF-1 application on hearing levels and its favorable safety profile suggest utility for topical IGF-1 therapy as a salvage treatment for SSHL."

      You have to love the tortured language "present results suggest the possibility..." They clearly want to say they found what they were looking for but of course "the current study design failed to confirm this possibility". It may well be the case that IGF-1 is an appropriate salvage treatment, and it seems like there is enough promise for people to keep exploring this. But it is hardly the case that it has been shown to be very effective in treating SSHL. Even if it is effective for SSHL, that doesn't mean it is effective more generally. It would be interesting to know if it is effective for some causes of SSHL.

      In some follow-up work (https://www.ncbi.nlm.nih.gov/pubmed/26739948) they do regression analysis and find a statistically significant but clinically insigificant 5.9 dB improvement for their IGF-1 hydrogel. This is smaller than the effect for having a < 90 dB (vs > 90 dB) hearing loss (16.67 dB improvement), being < 60 years old (10.58) and < 14 days to treatment (7.20). They note that one possible reason for their results is the different method of administration and that hydrogel steroids might work better than IT steroids, but they don't test that.

      Ito's group clearly wants to find something here. And it makes sense because, just like a company, they are testing a hydrogel they created: "To provide a new therapeutic option for SSHL, we developed a topical insulin-like growth factor-1 (IGF-1) therapy in which gelatin hydrogels impregnated with recombinant human IGF-1 are applied to the middle ear." (emphasis added) Given this, it is important to pay attention to the details because whether conscious or not, they will spin things in a positive way.
       
      Last edited: Mar 17, 2019
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    24. JohnAdams
      Festive

      JohnAdams Member Benefactor Hall of Fame

      Location:
      Vatican
      Tinnitus Since:
      May 1st 2018
      Cause of Tinnitus:
      Aspirin Toxicity/Possibly Noise
      "so there was no overall effect"

      So are you saying that there was no overall effect in hearing improvement or that there was no overall effect that was better than dexamethasone? Because I'm pretty sure that the null hypothesis wasn't whether it was effective, but that IGF-1 was better than dexamethasone.

      From the same study:

      "In the IGF1 group, 66.7% (95% CI, 52.9e78.6%) of the patients showed hearing improvement compared to 53.6% (95% CI, 39.7e67.0%) of the patients in the Dex group."

      So 53% showed hearing improvement in one group and the IGF-1 group showed 66.7%. The confident interval of both groups was 95%. So that's basically a half to 2/3rds chance of efficacy.

      Confidence interval = a range of values so defined that there is a specified probability that the value of a parameter lies within it.

      Think about it, dexamethasone injected into the middle ear to diffuse directly into the cochlea would introduce a higher concentration of the steroid into the cochlea than orally. So why do they even prescribe prednisone to people in acute stage hearing loss?
       
    25. Aaron123

      Aaron123 Member

      Tinnitus Since:
      00/0000
      Cause of Tinnitus:
      Irrelevant
      Pure tone audiometry is not "inaccurate". It accurately measures thresholds at a specific set of frequencies though there is a +- 5 dB test/retest variability. If you want more frequencies, you can do much better with 'sweep' OAEs (http://www.dizziness-and-balance.com/testing/hearing/sweepOAE.html). That will give you an essentially continuous picture of thresholds and may well highlight any dips between standard frequencies.

      This of course is still incomplete as there are other aspects of hearing. There's a lot of work recently on tests for cochlear synaptopathy, but the results have been inconsistent with different groups finding different results. Thus, we are a ways away from any usable test - or battery of tests - for synaptopathy.

      I realize people are frustrated with the speed of progress - that is apparent in multiple threads - but this issue really highlights the problem. There's no way to image, biopsy, or explore the inner ear in a living human (absent some other need to do surgery and remove something but of course by definition, this person is likely not "typical" and what is found may not generalize to the broader population),

      Thus we don't know for certain what specific parameters might cause cochlear synaptopathy in humans (physiology is different enough across species that what works in mice won't necessarily work in humans). Not knowing the parameters, even tests that might have been done 20 years ago to induce temporary threshold shifts in humans are now unethical.

      So we are left with not knowing which people do or don't have synaptopathy and are trying to decide which tests "work". This is hard because you can't compare the test results to some biological measure to know if the test is accurate. So studies use groups of noise exposed vs not noise exposed humans as proxies for synaptopathy and no synaptopathy then look to see if measures used in animal studies - ABRs, MEMR, EFR, etc - confirm the prior expectations that the tests results for the noise exposed ("damaged") indicate synaptopathy in the same way as the animal studies while the test results for the non-noise exposed people do not indicate damage. Results of these studies have been inconsistent and contradictory. So it is going to be awhile before there is a test for this.

      So results for synaptopathy in particular and hearing issues in general are slow because no one can 'see' what is going on in the level of detail necessarily to know anything with certainty - can't know with certainty if synapes are damaged, if they grow back, if hair cells are damaged, if there's other damage, etc etc etc. Testing will proceed hand in hand with other areas of research - one of the things Decibel is working on is better testing.

      Sorry I could keep going, but this is already way too long and way off topic - as was my previous post in this thread. Mods can feel free to move/delete.
       
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    26. JohnAdams
      Festive

      JohnAdams Member Benefactor Hall of Fame

      Location:
      Vatican
      Tinnitus Since:
      May 1st 2018
      Cause of Tinnitus:
      Aspirin Toxicity/Possibly Noise
      That's a completely baseless allegation.

      And besides, there is something called the peer-review process. This ensures that material is thoroughly scrutinized before it is published in medical journals. This process rules out the sort of bias that you're implying here. It's not like the people that did the study just conducted a science experiment and then posted this on the internet.

      upload_2019-3-16_21-55-28.png

      See how it says "Peer Reviewed"?

      The Journal that this is posted in is
      Hearing Research
      Volume 330, Part A, December 2015, Pages 2-9


      upload_2019-3-16_21-59-3.png

      Your baseless allegations of impropriety, where you have directly stated that "Ito's group clearly wants to find something here.", need to also extend to the journal review process and this journal in question.
       
    27. Aaron123

      Aaron123 Member

      Tinnitus Since:
      00/0000
      Cause of Tinnitus:
      Irrelevant
      I should have been clearer. The null here is that there is no difference between IGF and Dex though as I said, I think things are stacked a bit against Dex.
      If you are comparing the 53 to 66, the fact that the confidence interval is 95% is irrelevant. I think what you are saying is that in one case 53 and the other 67% of people "showed hearing improvement". This sound great, right? The problem is that as they note: "In addition, spontaneous recovery of hearing occurs in 30 to 60% of patients with SSHL [5,26-28]". So it is not 53 and 67 vs 0. It is 53 and 67 versus some number between 30 and 60 depending on the study. Clearly 67 is much better than 30 but then we do need confidence intervals. The fact that the lower end of the CI for IGF is 40 is good, but we would need to know the CI for the estimate of the spontaneous recovery rate to know if these are different.

      But this study isn't set up to answer that question.
       
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    28. JohnAdams
      Festive

      JohnAdams Member Benefactor Hall of Fame

      Location:
      Vatican
      Tinnitus Since:
      May 1st 2018
      Cause of Tinnitus:
      Aspirin Toxicity/Possibly Noise
      So are you saying that we should ignore and not fund further research into IGF-1 for the treatment of HL?

      One thing the study did state that there were no adverse events.

      Considering how bad the quality of many of our lives is due to HL and tinnitus, isn't any thing that is safe and hold the potential to improve our condition something we should be gung-ho for?
       
    29. Bill Bauer
      No Mood

      Bill Bauer Member Hall of Fame

      Tinnitus Since:
      February, 2017
      Cause of Tinnitus:
      Acoustic Trauma
      https://www.masseyeandear.org/for-p...ation/diseases-and-conditions/sudden-deafness
      https://www.tinnitustalk.com/thread...eone-else-who-has-tinnitus.26850/#post-307822

      Search this site for "prednisone injections"
      Here is one study to get you started
       
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    30. Aaron123

      Aaron123 Member

      Tinnitus Since:
      00/0000
      Cause of Tinnitus:
      Irrelevant
      I'm not sure why you are so defensive about this.

      I am in academia so I am well aware (painfully in fact) of peer review. My papers are subject to it, and I serve as a reviewer for other papers. It's this background and training that leads me to look at all of the details that may seem insignificant or nitpicky or whatever. I read *every* paper critically. The ones in the last few years on tinnitus drugs have been painful. Excruciating twisting and post hoc analysis to try to find an effect to justify another trial even if the evidence does not seem to be there.

      Also, peer review is a great thing, but it doesn't in and of itself rule out "bias" or much of anything else. It's also not foolproof or there wouldn't be a need for retraction watch. (There are issues with peer review as well - is it really double-blind? etc etc) One thing very much in this paper's favor is the journal. Hearing Research is a serious journal. That's sometimes lost on here as people seem to think all journals are created equal.

      I'm not sure why you think I am accusing anyone of impropriety. I would hope it is factually correct that they "clearly want to find something here". If they don't, they are wasting alot of time and energy. I believe they believe what they are doing. I believe they have accurately reported what they did. They accurately report they didn't find what they were looking for. I'm not suggesting they falsified data or anything else - it's important to understand, however, that if they had done so, peer review would not in general catch it.

      Trust me, if you have worked for months - or years - on something and it didn't come out the way you wanted, you want to find a way to talk about it in the paper that highlights what "worked" and downplays a bit the parts that didn't. That's not impropriety. It's part of the academic world - an the world in general; human nature I guess regardless of context. In academia there also a publication bias against null results, and funders certainly like to see "positive" results. Both of these things are true even though null results contribute to knowledge by showing what didn't work. (And actually trials is may be a place where null results are valuable.)

      So I am not accusing anyone of impropriety. I am suggesting that papers be read closely and critically, perhaps even skeptically.

      Finally, I am not sure why large images were needed. They clutter up the thread and presumably increase hosting costs.
       
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