What Is There to Do About Apathy in the Medical Scientific Community to Our Cause?

Discussion in 'Support' started by Gl0w0ut, Jun 12, 2018.

    1. Gl0w0ut
      Inactive

      Gl0w0ut Member

      Tinnitus Since:
      April 2017
      Cause of Tinnitus:
      Unknown
      It is no secret that ENTs and audiologists are far from saviors of tinnitus patients when it comes to their suffering. Often, we are told that, in all cases with cilia loss, the tinnitus is permanent and there is nothing that can be done. You have all seen my rage at such news, to be told in a seemingly unempathetic way that there is nothing this specialist can do and all you're left to do is cope. Yet their answer is understandable. Currently, medical science offers little hope in terms of curing tinnitus, let along treating it. Often, the underlying symptoms that accompany this disorder (depression, stress, anxiety, and insomnia) are readily treated without any regard for the very thing that is causing it. The purpose of this post is to explore why we are seemingly stuck in this stage of little hope of frustration.

      1. Tinnitus is a "symptom" and not a "disease". It is often the case that many academic and medical professionals regard tinnitus as a symptom rather than an actual affliction. Indeed, the tinnitus is usually indicative of hearing loss, TMJ, or other medical issues. However, such professionals sometimes fail to identify what this is specifically a "symptom" of. I think its high time for medical and academic professionals to regard tinnitus as a disease rather than just a symptom. The very manor in which we approach the affliction is first defined by how we classify it. Nobody wants to cure a "symptom", even though ironically it is the associated symptoms of tinnitus that are often treated instead of the tinnitus itself.

      2. Research is complicated by money. Like most things in life, money is what makes the world go round. We don't develop chemotherapy drugs because we want to treat cancer per se, but because the company overseeing its development has profit potential. In the case of tinnitus, there is an influx of literature this century compared to the previous century. However, there is still a severe lack of it compared to other afflictions. And who can blame the government and other grant providers? After all, why spend millions to cure an affliction people are expected to cope or "habituate" to while diseases like cancer, diabetes, and heart disease afflict and kill millions every year? You can say its because depression and suicide are consequences of tinnitus, but statistics show that the this is only a small minority of the community. These sufferers do matter (to me anyways), but again, science will simply prescribe to treat the depression, anxiety, and insomnia because such treatments exist. Scientists are just as lazy as regular people are, and the less work they have to do, the better (f0r them).

      3. Current treatments have a conflict of interest. Whether its audiologists and ENTs getting kickbacks for prescribing expensive and somewhat helpful devices like hearing aids and cochlear implants, to CBT and TRT specialists charging a small fortune for the dozens of sessions said to be required before relief is "found", to the endless prescriptions of antidepressants, antipsychotics, and other useless medications (with the exception of sedatives and glutamate antagonists), professionals may feel the need to guard their cash cow businesses by promoting their treatments over research for a cure.

      4. Research knows little about tinnitus and results in disagreements about pathology. Finally, of the research that is being done, there is often a conflict over how tinnitus develops, what brain changes occur because of it and nothing else, and fights over whether the so-called "gate keeping" theory of tinnitus purposed by Rauschecker provides any insight or not. A 2014 meta analysis paper concluded that current neuroanatomical evidence fails to substantiate the theory, though does not reject it. In the end, research seems to have stalled, and hedges off its chips on higher brain regions for treatment with preexisting drugs (like SSRIs) instead of targeting the commonly know burst firing areas in the brainstem's Dorsal Cochlear Nucleus.

      I don't want to think this fight is hopeless, but it is hard to feel this way. Professionals, even those afflicted themselves, don't seem to care. Wanting to boost mood and promoting coping over addressing the problem causing chronic distress anyways. What do you guys think we, as a community, should do to promote a cure over coping, depression treatments, and talk therapies? How can we convince the government, medical professionals, etc. to actually fight for a cure rather than using preexisting drugs and therapies to address symptoms of what is increasingly seen as an affliction rather than a mere "symptom" of a greater problem.
       
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    2. dpdx
      Disappointed

      dpdx Member Benefactor Hall of Fame

      Location:
      Murica
      Tinnitus Since:
      Onset:09/23/2017 Worsened: 1/17/2018
      Cause of Tinnitus:
      Acoustic Trauma, worsened by caloric test/VEMP test 90db nhL
      SPOT ON!
       
      • Agree Agree x 2
    3. Tinniger

      Tinniger Member Benefactor

      Location:
      Germany
      Tinnitus Since:
      06/2017
      Cause of Tinnitus:
      increasingly uncertain, maybe noise, maybe somatic ?
      I support the idea that tinnitus is a symptom, not a disease. Just as headaches are a symptom, not a disease. Headache experts distinguish dozens of diseases from headache symptoms. I think the approach that tinnitus is a symptom is right.
      Of course it would not be a bad idea and an excellent achievement to be able to treat the tinnitus symptom - just as with headaches.
       
      • Like Like x 1
    4. Alex Prime
      Anime

      Alex Prime Member

      Location:
      Sofia, Bulgaria
      Tinnitus Since:
      05/2018
      Cause of Tinnitus:
      Unknown
      There should be a way to ask high profile sufferers from help. People from motorsports, military and music industry... they should raise awareness...
       
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    5. AUTHOR
      AUTHOR
      Gl0w0ut
      Inactive

      Gl0w0ut Member

      Tinnitus Since:
      April 2017
      Cause of Tinnitus:
      Unknown
      That's a neat idea, and could help with prevention of tinnitus. Though we need advocacy beyond just telling others to protect their ears. Sadly, it isn't an affliction most people can relate to. Hell, depression is more common than tinnitus and most people barely understand that!
       
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    6. dpdx
      Disappointed

      dpdx Member Benefactor Hall of Fame

      Location:
      Murica
      Tinnitus Since:
      Onset:09/23/2017 Worsened: 1/17/2018
      Cause of Tinnitus:
      Acoustic Trauma, worsened by caloric test/VEMP test 90db nhL
      This is pure agony 24/7.
       
      • Agree Agree x 2
    7. valeri

      valeri Member Benefactor Hall of Fame

      Location:
      Australia
      Tinnitus Since:
      09/2011
      Why blame medical community about apathy?

      Only few threads down @Ed209 tried to get 50 donations for Tinnitus Talk and can’t reach the lousy target!

      Is medical community really to be blamed?

      Think about it!

      If we can’t get 50 donations out of 25.000 members on this forum than how can we expect any change elsewhere?

      The apathy is happening right here amongst us!

      We are exactly where we deserve to be!!!!
       
    8. AUTHOR
      AUTHOR
      Gl0w0ut
      Inactive

      Gl0w0ut Member

      Tinnitus Since:
      April 2017
      Cause of Tinnitus:
      Unknown
      If you read my post you would understand: this website isn't conducting studies that get published and lead to new treatments. Only accredited institutions do that. They are the ones who develop treatment and they seemingly couldn't care less about helping.

      As for this site, is Tinnitus Talk in need of funding?
       
      • Agree Agree x 1
    9. daiso

      daiso Member Benefactor

      Tinnitus Since:
      OCt 2017
      Cause of Tinnitus:
      Unknown
      Well said. Whether Tinnitus Talk needs funding or not is besides the point. We need to first work on our own apathy. Here's the chance to do that:

      https://www.tinnitustalk.com/threads/power-up-tinnitus-talk.533/
       
      • Agree Agree x 1
    10. Greg Sacramento

      Greg Sacramento Member Benefactor Hall of Fame

      Tinnitus Since:
      April 2011
      Cause of Tinnitus:
      syringing and now somatic T dental work
      I think that research has found most of the causes of tinnitus. There are sites such as training and rehabilitation com that has a lot of information from the ear to physical, but not all available information on facial concerns. Facial concerns can fill the pages of many medical books, but there are many articles for a particular facial problem. We know that processing in the brain is responsible for sound perception, but tinnitus can just go away if a physical cause is treatment or fixed.

      I have come to the conclusion why focus on the brain. We may never see a brain drug that will cure or stop the ringing for all because tinnitus has many physical origins. I now see discussions about the brain as useless academic talk when it comes to tinnitus. Knowing the areas and pathways of the brain per tinnitus is interesting, but nothing more.

      I do think that the medical community can often do more for those with physical tinnitus. Medical treatment is needed when something is physically wrong. When doctors can't find a reason for those with physical tinnitus or for any physical problem then changes within medical practice needs to be made, but it's all about profit $ margins.
       
    11. valeri

      valeri Member Benefactor Hall of Fame

      Location:
      Australia
      Tinnitus Since:
      09/2011
      You also need to read my post again!

      If 25.000 members of this forum can’t get 50 lousy donations what does that tell you?!

      There are millions out there SUFFERING! Truly SUFFERING!
      Some are no longer with us:( (but that’s not because of tinnitus but their weak mindset!!!)

      Yet, there is no unity! There is no interest to change things!

      How is medical community suppose to hear about us or understand the true devastation of this condition when we agree with the current treatment “go home and live with it”?

      Why do you think we are still stuck in the Stone Age of Jastreboff and “you don’t feel your socks do you”????

      Believe me when I say that those with mild tinnitus and “veterans” are far worse and damaging for tinnitus progress than those with no tinnitus.

      Mild cases see it as no big deal, life is better than ever, and veterans think that their level
      of acceptance MUST be the standard for the rest of us.

      So either way, unless you are “mild” or “veteran” you are screwed!

      Why would medical community invest in some hunky dory condition?
       

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