Why Are All These Potential Treatments Taking So Long?

Discussion in 'Support' started by valeri, Mar 7, 2015.

tinnitus forum
    1. valeri

      valeri Member Benefactor Team Awareness

      Location:
      Australia
      Tinnitus Since:
      09/2011
      Didn't want to derail Autifony thread any further but just wanted to expand on @RCP1 's opinion that it's hard to understand why in 2015. we still have no universal relief (let alone cure) for millions tourtured by noise.

      One would think that GSK, for example, would jump on board and do a proper trial of RTG at least.

      After results that we witnessed here on board I'm lost for words that nothing came out of it, just some lousy journal publication (by no means I'm dismissive of our team trobalt effort).

      Dr TT has been working on an alternative version of RTG for how many years now?

      Then we have all sorts of stimulation procedures that have been going on for over 10 years with no conclusive results yet.

      Why are these things taking so long is just beyond me?!
       
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    2. jeannie
      Stressed

      jeannie Member

      Tinnitus Since:
      2013
      Cause of Tinnitus:
      Noise-induced, Ear Infection, Medication... Who knows?
      i agree Valerie.. no wonder we are all so despondent. there is nothing concrete to help us.. why???? I know inner ears and brain is a very complex area, but so is the heart. I truly hope n pray something happens soon for us that is good news,, what a horrible way to have to live, I know it could be worse. im thankful , :dunno::(
       
    3. attheedgeofscience
      Uninvolved

      attheedgeofscience Member Hall of Fame

      Location:
      Denmark
      Tinnitus Since:
      Childhood
      Cause of Tinnitus:
      Head Injury
      The idea behind getting the results published in a recognized journal is to create awareness. The corresponding author of the editorial is an ENT professor; the article is peer reviewed. These two factors create credibility towards the audience of the journal (which consists of the medical- and pharmacological-community).

      So I would say it is too early to decide if "nothing came out of it" (i.e. it has not even been published yet...).

      Given the 10 year time frame you mention, the achievement of Team Trobalt is all the more impressive. We managed to set up connections with researchers (even though we have no background in the medical field), obtain an MoA of Trobalt in relation to tinnitus, properly research the topic of potassium channel modulators, study the data collected, and submit a manuscript to a recognized journal of pharmacology (with the help of TRI). All in the time span of 2 to 3 months (not 10 years!). The odds that were against us from the beginning means the whole deal was close to mission impossible. But still, we did it.
       
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    4. valeri

      valeri Member Benefactor Team Awareness

      Location:
      Australia
      Tinnitus Since:
      09/2011
      @attheedgeofscience

      My question is by no means ment to dismiss the amazing effort you guys put in towards making a change, and I'm sorry if that's the impression you got.

      It was simply a disappointing statement, a pure disbelief that 15 years into 21st century there is still one big NOTHING for tinnitus relief.

      Lot of this and that, bits and pieces here and there but nothing proven, nothing viable except f....g habituation:mad:
       
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    5. MattK

      MattK Member

      Tinnitus Since:
      2/13/2014
      Valeri,

      how much did you think about tinnitus before you were afflicted with it? If you were like most people, probably not much at all. Unfortunately, this is largely why tinnitus isn't taken that seriously. It's generally not life threatening, and to make it worse, it's out of sight, out of mind. People can't see it or hear it, so it just doesn't get the attention it deserves.

      It sucks, but I think these are the main reasons it's not taken seriously. Furthermore, if tinnitus is in the brain then you're also talking about the most complicated organ in the body.

      As much as we've advanced in some ways, we've also not come as far as we sometimes think we should have.

      Think of it this way... The movie Back to the Future 2 came out in 1985. And when Marty traveled to 2015, there were flying cars and hover boards. Obviously this was just a movie, but at the time it seemed plausible in 30 years. But as far as cars and skateboards go, we're basically where we were 1985. We're always imagining that technology will be so much different in the future but it's largely the same in most areas.
       
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    6. CarolinaGuy
      Wishful

      CarolinaGuy Member

      Location:
      Virginia
      Tinnitus Since:
      10/2014
      Cause of Tinnitus:
      Most likely ototoxicity
      I am no historian of medicine, but it seems that the greatest advances in medical science over the last 100 years have come in preventing and fighting communicable diseases.
      We have been able to fight back against the invaders that once killed so many, so young. Even though some of those microorganisms are making a comeback now due to resistance/evolution.
      Thanks to electronics and computers, we have also developed much greater tools for diagnosis now.
      However, when it comes to treating things that go wrong internally, with the body's own systems, progress is slow.
      How long has there been a war on cancer now? Survival rates have improved, but still no cure.
      Diabetes remains treatable but there is no cure.

      The brain is the least understood of all organs.
       
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    7. Stink

      Stink Member

      Location:
      US
      Tinnitus Since:
      09/2000
      THE BRAIN IS NOT UNDERSTOOD AT ALL

      alzheimer's

      parkinson's

      MS

      tremors

      ALS

      Are there cures or 100% effective treatments for those? NO!

      how can anyone expect tinnitus to be cured ANYTIME SOON when we SO KNOW LITTLE of the brain and these diseases

      we are lucky if there are working treatments for tinnitus in the next 20 years! a CURE is probably 100 years away

      please... STAY REALISTIC
       
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    8. NiNyu

      NiNyu Member

      Tinnitus Since:
      29/12/2014
      Cause of Tinnitus:
      barotrauma? stress?
      They don't care about us! The only ones that do are scammers, trying to sell off the latest fakes.

      @MattK has a point, those not afflicted do NOT understand, do NOT care, nor are they capable to comprehend how devastating T is. For them it's not contagious, not life threatening, you can't see or hear it, it's just a sound in the head, thus it can't be that serious. At least that's the reaction I get all the time.

      We all know T dwells in the auditory cortex. Neurons in the auditory cortex are organized according to the frequency of sound to which they respond best. The frequency map (tonotopic map), which interacts with the sensory cells in the cochlea, as long as they are still working. If they cease to send data to the auditory cortex the neurons in the tonotopic map go apesh*t.

      So, what's the solution here? If you ask me, I'd say lobotomy. Cut out the damn auditory cortex! Get rid of this motherfuc*ing apesh't crazy neurons. Period. It might be risky. So what? Do you really call this life? T is fuc*ing with our senses 24/7 no break. It is a damn sense! Like pain you do feel it in your brain.

      @Stink, for some of your mentioned ailments are actually treatments available. For T is nothing there. Just bogus stuff, and of course heavy meds that do NOT address T.
       
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    9. attheedgeofscience
      Uninvolved

      attheedgeofscience Member Hall of Fame

      Location:
      Denmark
      Tinnitus Since:
      Childhood
      Cause of Tinnitus:
      Head Injury
      That, in a nutshell, is actually pretty much the layman's terms of the theory behind the HIFU procedure which you - the best I can tell - did not really support...
       
    10. NiNyu

      NiNyu Member

      Tinnitus Since:
      29/12/2014
      Cause of Tinnitus:
      barotrauma? stress?
      @ attheedgeofscience, if the HUFI procedure works, which I highly question so far. But an old fashioned lobotomy could work.
       
    11. linearb
      Psychedelic

      linearb Member Hall of Fame

      Location:
      East Coast USA
      Tinnitus Since:
      1998
      I'd say the biggest risk is that it just doesn't work; completely severing the auditory nerve does not work in most cases. If you tried to remove all the parts of the brain involved in sustaining the signal, you'd be worse than lobotomized; you would probably be insane and the person you'd end up as would not have much in common with the person you started out as.

      The best path forward for people driven to try to find solutions beyond simple acceptance, is behaviors or therapies that change brain structure/function through behavioral, chemical or technological means. You could look at my DIY neurofeedback thread over in the alt therapies thread; I think that's a very practical thing to explore, the technology is accessible and has a demonstrated track record of reducing seizures and other unwanted excess neuronal activity. For that matter, so does meditation, based on numerous PET scans. Did you know that tinnitus distress is directly correlated with reduced gray matter density in the right anterior ansula -- and long term mindfulness meditation is direction correlated with increased gray density in the same structure? Chew on that for a while. There's imaging studies to support both claims.

      An old fashioned lobotomy is probably as likely to cause worse audio problems as to solve anything, but in any case, you would not be yourself at the end of the procedure.
       
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    12. RichL
      Inspired

      RichL Member Benefactor

      Location:
      Palmerston North NZ
      Tinnitus Since:
      1990
      Cause of Tinnitus:
      Acoustic trauma
      Not true at all, It is already being done to treat epilepsy and has been quite successful!

      http://www.healthline.com/health/types-epilepsy-brain-surgery#Hemispherectomy4

      http://www.dailymail.co.uk/health/a...n-removed-stop-having-seizures-5-minutes.html

      And the slam dunk....http://www.scientificamerican.com/article/strange-but-true-when-half-brain-better-than-whole/

      http://singularityhub.com/2013/03/2...ain-removed-and-changed-neuroscience-forever/

      Yes half the brain removed and no change to the personality or daily function!

      In fact, research is pointing to real positives coming from removal of parts of the brain!

      http://www.nature.com/news/2010/100210/full/news.2010.66.html

      As far as I can see there is no real reason why we are still waiting for a cure when they have quite an array of knowledge about the brain now, except that Tinnitus poses no real health threat and is, or was, considered nothing worth pursuing for most scientists, thank God that is changed.
       
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    13. attheedgeofscience
      Uninvolved

      attheedgeofscience Member Hall of Fame

      Location:
      Denmark
      Tinnitus Since:
      Childhood
      Cause of Tinnitus:
      Head Injury
      Great. Nothing wrong with questioning the facts - I do it myself all the time in my line of work. But the important thing is to question the facts on the right basis, and seeing you misspelt HIFU (twice), I start to wonder if you actually know what the professor does? Have you met him? Have you spoken with him?

      Can you for instance tell me the single "unifying" diagnosis that the professor attempts to establish for all of his patients? (Hint: it is the same diagnosis i.e. positive finding he looks for regardless of the neurological disorder).

      What makes HIFU surgery so uniquely different to other types of brain surgery?
       
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    14. valeri

      valeri Member Benefactor Team Awareness

      Location:
      Australia
      Tinnitus Since:
      09/2011
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    15. valeri

      valeri Member Benefactor Team Awareness

      Location:
      Australia
      Tinnitus Since:
      09/2011
      Agree but also don't forget that modern medicine is a bussines like any other, money and profit orientated.
      Cancer cure would mean a loss of billions of dollars collected for "research", following how many jobs, foundations, associations, organisations.....:dohanimation: and all the other bureaucracy expenses.

      There is still no cure for a common cold virus, but thats not to say that there's nothing to make it a bit more bearable.

      Same goes for other diseases, only tinnitus patients are told to go home and live with it.
       
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    16. Stink

      Stink Member

      Location:
      US
      Tinnitus Since:
      09/2000
      • Personal attacks on members are not suitable forum content.
      don't expect answer from him (he only answers what he wants to, he's pompous)

      ive read many past threads here and when people ask @attheedgeofscience something , he maybe answers 5% of time.
      there is no success rate for HIFU -it's a new treatment of tinnitus! no one knows!
       
    17. attheedgeofscience
      Uninvolved

      attheedgeofscience Member Hall of Fame

      Location:
      Denmark
      Tinnitus Since:
      Childhood
      Cause of Tinnitus:
      Head Injury
      You are too kind.

      Anyway... if you were to go to my profile - which you obviously wouldn't - then you would see that I have written more than 1000 posts on this forum and categorized all the information so that anyone can easily find all the unique information I have shared on stem cells, HIFU, LLLT, clinical trials (AM101+OTO311), potassium modulators, and many more things:

      upload_2015-3-8_13-18-15.png

      The difference between me and 99,9% of members on this site is that I have not only read about the science, I have actually done it!

      Perhaps that was because I have been busy working on behalf of the tinnitus community (along with the rest of Team Trobalt) in getting a study published on a possible pharmacological treatment for tinnitus. Personally, I have put in well over 200 hours in that project.

      I have also been busy with Team Awareness tracking down the very latest info from Otonomy and Auris Medical (both were my own initiatives). See Q&A thread elsewhere on this site.
       
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    18. linearb
      Psychedelic

      linearb Member Hall of Fame

      Location:
      East Coast USA
      Tinnitus Since:
      1998
      Then you're dramatically overestimating the degree to which tinnitus is understood. We have some pretty good models now that appear to be supported by fMRI studies, but they are only models. Epilepsy is relatively straightforward in comparison.

      If you guys want to be first in line to get part of your brains chopped off, though, be my guest!

      I had a researcher in LA offer to fly me out there to participate in a deep-brain stimulation study last fall. God bless the people who do end up being the test subjects! I might be a bit batty from my T, but I think I'd need to be whole-hog bonkers insane to line up for experimental, voluntary brain surgery -- the risks of creating problems much more terrifying to me that tinnitus, are real and perhaps double-digit in the cases of many of these treatment attempts, especially HIFU and other brain ablation techniques. If you can't imagine anything more terrifying than T, it might be instructive and useful for all kinds of reasons to spend some time volunteering with people who have had massive TBIs and stuff.

      The brain is awesome, and I like mine a lot. I'm obviously not nuts about all the noise, but I don't think I'd cut off my auditory cortex to spite my anterior insula...
       
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    19. Jesse Pinkman

      Jesse Pinkman Member

      Tinnitus Since:
      11/2011
      I dont think the problem is lack of effort and not caring. They may not care about us, but they care about making money. With tinnitus being as common as 10-15% og the general population, finding a cure or good treatmensts could be a billion dollar industry. Im pretty sure they want to find a cure. The problem lies rather in capabillity. Tinnitus is a brain problem and the brain is very complexand poorly understood.
       
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    20. RichL
      Inspired

      RichL Member Benefactor

      Location:
      Palmerston North NZ
      Tinnitus Since:
      1990
      Cause of Tinnitus:
      Acoustic trauma
      No I'm not, I simply proved the inaccuracy of your statement quoted here....



      They know allot more about Tinnitus than you are giving them credit for!
       
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    21. NiNyu

      NiNyu Member

      Tinnitus Since:
      29/12/2014
      Cause of Tinnitus:
      barotrauma? stress?
      Where are the facts? Where are the clinical trials? Where are the high intensity focused ultrasound cured T patients?
      nills called it HUFI hence I wrote HUFI. But honestly, who cares? Are you associated with the prof in Switzerland?

      You actually done it? And you still ask me questions?
       
    22. linearb
      Psychedelic

      linearb Member Hall of Fame

      Location:
      East Coast USA
      Tinnitus Since:
      1998
      I doubt it, reading the research is one of my hobbies and I have talked to a lot of the people doing the research.

      Either there's a vast conspiracy to hide tinnitus cures, or the science isn't quite there yet... Or else we'd have a cure!

      Conspiracies are not very likely.
       
    23. attheedgeofscience
      Uninvolved

      attheedgeofscience Member Hall of Fame

      Location:
      Denmark
      Tinnitus Since:
      Childhood
      Cause of Tinnitus:
      Head Injury
      Have you never been taught not to answer a question with a question?

      I simply wanted to establish whether you actually know anything about the HIFU-procedure that you posted two factual statements about:
      However given that you are unable to answer my (basic) questions about HIFU (the answers to which are easily available on this site and elsewhere), I somehow doubt that you know very much about the procedure (and consequently I do not see how you could write what you were quoted on above...). There is no need for armchair critics or wannabe experts on TT. If you do not know the subject matter at hand, why not just stay out of the discussion altogether?

      However, since you were unable to answer my questions, I guess I will have to answer them myself.
      Prof. Jeanmonod's basic diagnostic aim is to look for a clinical manifestation called thalamocortical (brain wave) dysrythmia. A positive finding looks like the following:

      https://www.tinnitustalk.com/thread...sed-ultrasound-surgery.276/page-10#post-94538

      (Red line - indicating a pathological condition - is above the green line; green line = control group).

      Compare that with my own image (which shows only a weak clinical manifestation of TCD):

      https://www.tinnitustalk.com/thread...used-ultrasound-surgery.276/page-8#post-75063

      Prof. Jeanmonod is a world class neurosurgeon who operates using high intensity focused ultrasound (HIFU). This - uniquely - means that he does not operate by drilling a hole in the patient's skull. No one else can do this. The procedure is therefore less invasive than regular brain surgery (and less risk of complications with e.g. post operative infections).
      HUFI or HIFU? I agree - who cares. I mean who cares if someone drives a BMW or a WBM. Makes no difference...
       
    24. NiNyu

      NiNyu Member

      Tinnitus Since:
      29/12/2014
      Cause of Tinnitus:
      barotrauma? stress?
      So @attheedgeofscience you went all the way down to Switzerland, did all the fancy tests, spoke to Prof. Jeanmonod a world class neurosurgeon, and you were told that you are not an eligible candidate for the HIFU surgery 'cause your brain wave activity wasn't that significant? But he suggested it might be ENT-related (cochlea & co), or you are in need of a lush Thai-massage, or it's all just a mental problem (emotional)? Honestly, I could have told you this for less than EUR 2200.

      No, no I think you were the only patient at the clinic that day 'cause no one else was willing to pay such an exaggerated price for a mere consultation. Seriously, how much money have you burned so far on treatments that did not work?

      And there's nothing new under the sky. HIFU is so unique that it isn't just applicable on every skull/brain. Again, where are the studies? Where are the cured T patients? Where are the clinical trials? All I see is someone that claims something for big money without any legit proof.
       
    25. attheedgeofscience
      Uninvolved

      attheedgeofscience Member Hall of Fame

      Location:
      Denmark
      Tinnitus Since:
      Childhood
      Cause of Tinnitus:
      Head Injury
      I doubt you can even tie your own shoelaces.
       
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    26. @attheedgeofscience I have been watching this thread with interest. Might I ask what is your line of work? I have been a researcher and professor in the health sciences for over 25 years. I would be interested in learning more about what you have done and published. I would be interested in helping with any research, publishing, getting the word out, on tinnitus should there be a need with your "team." But I understand if not. I would still be interested in learning more about what you have done. I have an all new appreciation for tinnitus since way back when, when one of my fellow graduate students did her PhD dissertation on tinnitus and biofeedback in the 1980s. I knew nothing about tinnitus, but I remember thinking back then, I hope I never get that! I am finding now that over the past year that T & H have brought me to my knees. I tried to PM you, but your settings do not allow for that.
       
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    27. NiNyu

      NiNyu Member

      Tinnitus Since:
      29/12/2014
      Cause of Tinnitus:
      barotrauma? stress?
      @attheedgeofscience, what are shoes? xD
      Seriously though, you are NOT being rational here. I am more than certain if a decent neurosurgeon cut out your auditory cortex, w/ or w/o HIFU or HUFI your T would be gone as well; no matter your brain wave activity. But perhaps Prof. Jeanmonod (a world class neurosurgeon) would disagree and claim that even w/o auditory cortex Mr. Edge-effect would still hear something. But then again I am not a world class neurosurgeon that charges ridiculous fees w/o having any substantial proof.
       
    28. attheedgeofscience
      Uninvolved

      attheedgeofscience Member Hall of Fame

      Location:
      Denmark
      Tinnitus Since:
      Childhood
      Cause of Tinnitus:
      Head Injury
      Finance; data analysis; mergers & acquisitions; complex project management in super-size organizations.
      If you wish, you could have a quick read of the following publicly available information:

      https://www.tinnitustalk.com/threads/retigabine-trobalt-potiga-—-petition-to-the-ata.6896/

      Especially page 4 (and onwards) are relevant. We also have a non-publicly available Team Trobalt section here on TT (with about 500 posts in total). That section is a lot more detailed but also contains slightly sensitive information. You are welcome to try to get a sense of the scope of the project via the public thread and then get back to myself or another member of Team Trobalt.

      I don't mean to sound difficult, but generally access to non-public information is on a need-to-know basis only (i.e. someone joining the team, basically). For reasons, I do not wish to get into in public, I would suggest you post a brief response in this thread if you feel Team Trobalt is something you would like to consider. I can disclose more details in a PM following that.
       
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    29. attheedgeofscience
      Uninvolved

      attheedgeofscience Member Hall of Fame

      Location:
      Denmark
      Tinnitus Since:
      Childhood
      Cause of Tinnitus:
      Head Injury
      ...Agreed. Along with your entire hearing capability, that is.

      My friend: it is way past your bedtime. Please make sure you attend school tomorrow; you sure could use a few lessons in a subject not-so-often found on the curriculum: common-sense.
       
    30. NiNyu

      NiNyu Member

      Tinnitus Since:
      29/12/2014
      Cause of Tinnitus:
      barotrauma? stress?
      Of course, your hearing would be lost too. But now ask yourself the question why did Prof. Jeanmonod dismiss your case? Those three additional explanations that Prof. Jeanmonod threw at you I have heard several times before from other incompetent ENTs. So much to common-sense. As said, try a lobotomy and your T is gone.
      I presume you have done an MRI so you can exclude ENT-related. You have been to Thailand? Bet you got a good massage there, so you can cross that off your list as well. Now go and figure.
       

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