Hello

Discussion in 'Introduce Yourself' started by cornelius, Mar 18, 2016.

Thread Status:
Not open for further replies.
tinnitus forum
    1. cornelius

      cornelius Member

      Tinnitus Since:
      2002
      Cause of Tinnitus:
      several acoustic traumas, always physician denial
      I have mild tinnitus with mild hearing loss since several acoustic traumas. Actually since my childhood I felt like I was very sensitive to noises and that there were minor damages after each loud exposure but since the internet and all the informations were not widespread I believed the nonsense of the doctors consisting in saying things like "you have normal hearing and buzzing in your head is normal, it's all in your head, see a psychiatrist and try to live with it, it is a hidden mental illness". I was not aware that below 20DB loss, hearing was considered normal, I regret that I didn't listen enough to my body instead of trusting all those "experts". If those "experts" had told me that ear traumas are not always legible and that it is not in my head my future would have been different.
      I met audiologists and learned how to do more professional audiograms than doctors with their few miserable frequencies and noticed all the damages. I'm a minor case compared to others here and try to keep hope for our future.

      Apart distress, I believe that our future might become brighter but not tomorrow, more in two or three decades

      I'm here to read and share good news in the research and sharing hope between ourselves.
       
      • Funny Funny x 1
    2. Genevieve

      Genevieve Member

      Location:
      The Netherlands
      Tinnitus Since:
      12/2015
      Cause of Tinnitus:
      car accident
      Hi Cornelius, I just read your story and what you said is true. Since my car accident I have made a lot of research and I have surffed to a lot of french/ Dutch forum. Actually there are still a lot of doctors/ ENT who still believed that T is more "psy" than a real illness, shame on them, because there is not yet a cure, they tried to make us believed that it's all psychological. In a french forum, a very well known ENT dared to say that the intensity of the most T did not exceed 5db! Thankfully for us there are very serious institutions in The Netherlands and In France who are real professionals and take our suffering very seriously
      (Imerta, Coopacoo, Kentalis, inSentis), take good care of you, Genevieve :huganimation:
       
    3. cornelius

      cornelius Member

      Tinnitus Since:
      2002
      Cause of Tinnitus:
      several acoustic traumas, always physician denial
      There are very few guenuine doctors interested in cure since they are paid for each appointment contrary to the medical engineers and researchers who choosed their job by vocation often with quiet second-rate salaries. It is more in universities, research poles from which a brighter future for us might eventually ensue. I've heard about that french ENT, he's famous for sure but won't stay in history in the next decades when tinnitus will become more and more measurable.
       
    4. attheedgeofscience
      Uninvolved

      attheedgeofscience Member Hall of Fame

      Location:
      Denmark
      Tinnitus Since:
      Childhood
      Cause of Tinnitus:
      Head Injury
      In terms of db-sl that is probably a correct assessment i.e. for most people with tinnitus their MML is no more than 5db above their hearing threshold at a given frequency. For more severe cases of tinnitus, the db-sl is 10 or more.

      So... I am afraid that the ENT is correct on that front.
       
    5. Genevieve

      Genevieve Member

      Location:
      The Netherlands
      Tinnitus Since:
      12/2015
      Cause of Tinnitus:
      car accident
      @attheedgeofscience Sorry to say, but it's really drives me mad when I read so much stupidity coming from a Tinnitus sufferer:mad: what is your next step on this matter, are you gonna tell me that all the people on this forum have exactly the same intensity/level of tinnitus that is to say no more than 5-10 db? Are you going to tell me that my H has exactly the same level as our administrator @billie48 ? Are you going to say that the "brilliant" book of french ENT Philippe Peinard tells us the truth about T&H? What ignorance of you!!!! Unless this is a brainwashing from our so called " brilliant " ENT expert who tries for decade to hide their powerlessness/inability in telling us lies " but it's all in your head, your T is very LOW, you must see a good psy" Because there is not a real cure yet for T&H these clever ENT tries also to minimize our suffering! If you really want to know what severe T&H is then I advise you to have a look to the story of Alexandre Thomas to " SOS acouphènes & Hyperacousie "
       
    6. Alue

      Alue Member

      Tinnitus Since:
      01/2016
      Cause of Tinnitus:
      Acoustic Trauma
      @Genevieve I don't think he meant it like that.
      But 5db above hearing threshold sounds really minimal to me. Maybe that's all the people that can hear a faint noise in absolute silence and call it tinnitus. Mine was measured by an audiologist at being about 30db above my hearing threshold, and I would characterize my T as moderate, a 6-7/10... enough to be very bothersome, but I know it could be a lot worse.
       
    7. attheedgeofscience
      Uninvolved

      attheedgeofscience Member Hall of Fame

      Location:
      Denmark
      Tinnitus Since:
      Childhood
      Cause of Tinnitus:
      Head Injury
      Hey - sorry I exist. If you don't want to take my word for it, then take it from a journal of science (I even highlighted the relevant bits for you...):

      upload_2016-3-25_10-16-4.png

      There are no doubt folks who think they have 20 or 30 dB-SL ratings for their loudness match - but when that happens it is possibly because of applying an incorrect matching frequency. There are also - of course - those who suffer from severe tinnitus in which case, they may indeed have a dB-SL rating of > 10 (severe tinnitus is a minority, however). As can be seen from the quoted paragraphs, loudness matching of just a few dB above hearing threshold was commonly observed (in the 2nd group of individuals).

      Dr. Nagler - the former ATA chairman - has described his tinnitus as severe (or words to that effect) not to mention rating it a "10" on a 0-10 scale - and yet he has "just" a rating of 11 dB-SL for his matching frequency:
      In addition, from the included statistics in the above paragraph, 11 dB-SL is louder than 90% of folks with tinnitus severe enough to seek attention for it (and people who seek attention for their tinnitus at the doctor's office are usually already worse off than those who don't - so there is an additional compounding factor).

      All-in-all, I stand by the assertion that most people with tinnitus have a dB-SL rating of no more than 5 dB (at their matching frequency). Perhaps, I am stupid - that's entirely possible as with many other individuals on planet Earth, but those are nonetheless the facts.
       

      Attached Files:

    8. attheedgeofscience
      Uninvolved

      attheedgeofscience Member Hall of Fame

      Location:
      Denmark
      Tinnitus Since:
      Childhood
      Cause of Tinnitus:
      Head Injury
      I wasn't aware that our long time member, @billie48, was an administrator. In fact, I was not even aware that such a role exists on TinnitusTalk - but hey, you might just know something which I don't. The world is full of surprises, right?
       
    9. Genevieve

      Genevieve Member

      Location:
      The Netherlands
      Tinnitus Since:
      12/2015
      Cause of Tinnitus:
      car accident
      Thank you for the link @attheedgeofscience English is not my mother language so I had to use a lot of my energy and concentration to read your very technical article, but it's OK I'm still alive :bored: :wacky: A few things I quoted from this intelligent piece of work: " Fowler (1942), noted that although patients described their Tinnitus as very loud, he found it could usually be matched at only 5 to 10 db sl. In his opinion, Tinnitus being an "ILLUSION" tends to be EXAGGERATED, the typical loudness matches of 5 to 10db sl were very" FAINT" and did not corredpond to the reported severity- Fowler recommended EDUCATING patients regarding this DISCREPANCY to understand that their STATEMENTS about severity did not correspond to the " FACTS"
      I think I'm really convinced here! :rolleyes: I really feel much better, Fowler has all my compassion, his studies and great expertise dates back to 1948! The funny/ worst part is that Philipe Peignard "our great and brilliant french ENT" thinks exactly the same 70 years later, but in fact worse: " the loudness of all tinnitus does not exceed 2db" Thank you very much Philippe for this great assessment :beeranimation: So even if a tinnitus sufferer hears a loud electric drill in his ears according to good old Philippe it's a distortion because all T do not exceed 2db!! For the record between 0 and 2db, the sound is almost INAUDIBLE to the human ears! and between 10db and 20db we can speak about a very low whispering, wouw thanks again Philippe I have been brainwashed by your expertise! :wacky: I continue and I quote: " Current techniques for Tinnitus measurement are almost as numerous as the investigators who employ them, highlighting the NEED for standardization of MEASUREMENT methods, although data concerning the RELIABILITY of these measures have been INCOMPLETE". Wouw, Philippe should read this, at least a little bit of honesty here! :beeranimation: " We know that appropriate masking sounds can reduce or ELIMINATE the perception of tinnitus in APPROXIMATELY 95% percent of ALL patients ( Vernon and Merkle 1988 ) and also thus for the poor ones who hears an electric drill in his ears, if you cannot succeed to mask your T it means that you don't want to make efforts and therefore you are a VERY BAD patient, Cheers! I go on and I quote:s for testing tinnitus" " For all that is known, it is the UNKNOWN and the issues of DISAGREEMENT that currently prevent DEVELOPMENT of more uniform method
      For sure they are here again more HONEST than our good old Philippe!
      " An example is the DISAGREEMENT concerning the AMOUNT of VARIABILITY in regard to Tinnitus LOUDNESS matches and pitch measures. It is our HOPE that by HIGHLIGHTING the types of disagreement characterizing past research, the prevent review will encourage tinnitus researchers to WORK TOGETHER to develop more uniform testing techniques" Well, I feel now really exhausting :wacky::wacky: But it was worth trying isn't it ? If you are interesting in the story of Alexandre Thomas and if you can read French ( but you can also translate with google) you can go to his website:
      " SOS acouphènes & Hyperacousie"
       
    10. Genevieve

      Genevieve Member

      Location:
      The Netherlands
      Tinnitus Since:
      12/2015
      Cause of Tinnitus:
      car accident
      Yes, you're right the world is full of surprise like my car accident :(:banghead:
       
    11. attheedgeofscience
      Uninvolved

      attheedgeofscience Member Hall of Fame

      Location:
      Denmark
      Tinnitus Since:
      Childhood
      Cause of Tinnitus:
      Head Injury
      Your posts read like a long rant of subjectivity from East to West. The above quote is an objective finding. How a person - you, me, or Dr. Philippe - interprets that, is when it becomes subjective. What is loud, what is not loud - mixed with location of tinnitus in the head (versus ears) is when it becomes subjective. So is suffering.

      Disagreeing with an objective finding is like saying gravity doesn't exist. It does. Whether you like it or not. You and others may be surprised to learn that masking of tinnitus can in the majority of cases be achieved with a matching sound of 5 to 10 dB above hearing threshold (at that frequency). Does that mean those patients don't suffer - I don't know: I am not even going to attempt to answer that question. I merely pointed out an objective finding, ok?

      So I looked up Dr. Philippe Peignard (on Youtube) - here is a short clip:

      Dr Philippe Peignard C'est au programme...


      I am not a huge fan of applying psychotherapy to a condition like tinnitus (tinnitus is not a disease of the mind, but of the brain). However, the 2nd female patient did seem to have regained her life (and had been suffering for 20 years). So, it is perhaps possible in some cases to get a person's life back on track. And if it works, well, that is all that matters, right?

      Thanks. I had a quick look. Not sure why his story is so important to share. He is just another tinnitus patient complaining about the lack of treatment options in the world. There are many millions like him. Indeed a lot of his information is subjective - complaining why doctors are useless. What else is new? More so than any other group of patients, tinnitus patients are their own worst enemy:
      • To begin with, tinnitus is highly preventable (as noise is the leading culprit - by far). But human beings tend not to care (ignorance as well as "it happens to someone else"-attitude). Big mistake...
      • Even after a person develops tinnitus, and therefore knows how disabling it can be, there is still no shortage of folks who continue to push their luck by e.g. attending a concert for the 2nd time. Just search this forum.
      • This forum probably has close to one million visitors per year. If each person donated just one dollar that would be one million dollars (a pretty impressive sum of money). Instead, you will find that raising just a couple of hundred dollars can be a challenge. But it gets worse: not only can this forum not get a visitor to pay up one dollar, but asking the same visitor to rate a post on Facebook is also a problem (and that's just a click with a mouse button - pretty cheap). I always feel that there is a direct link between action and suffering. And it would seem that the tinnitus community is excellent at complaining rather than endorsing some very worthwhile efforts here on TinnitusTalk. But one dollar (or even a mouse click) is too much to ask (apparently).
      I will let you decide on that. This year I will be assisting the world's leading tinnitus researchers win a prize which will enable them to promote tinnitus research. The framework can be seen here:

      http://journal.frontiersin.org/rese...erstanding-of-tinnitus-heterogeneity#overview

      (and yes, the above will indirectly benefit you as a patient).

      Later this week, I will be submitting a review of intratympanic delivery applications to a stem cell hospital (along with a research paper on cochlear regeneration using MSCs). If the procedure can be adopted to humans, that will become the first hospital in the world to offer such a treatment - advancing the therapy timeline to the patient by several years...

      Well, they do say "don't text and drive". Now you know why they say it...
       
    12. Genevieve

      Genevieve Member

      Location:
      The Netherlands
      Tinnitus Since:
      12/2015
      Cause of Tinnitus:
      car accident
      Who the fuck are you ? How can you dare to say I was texting when I was driving???? where do you read this???? Do you know what happened this particular night???? where you with me and my daughter in the car???? Your are not a tinnitus sufferer for me your are just a hidden ENT with your pompous and complicated pseudonym. I tried to be specific in my answer and your are just being MEAN for no reason at all or just maybe because I said you were stupid or BRAINWASHED by these ENT who dindn't give a shit for our suffering (if you are really a tinnitus sufferer) and tried to minimize our pain because they are ignorant and powerlessness concerning treating this disease who has always existed, I'm sure you are also GLAD that I am suffering like HELL since my car accident, no you are definitlty not a tinnitus patient, your are just a NARCISSISTIC PERVERT who adored to HURT people because you are just full of yourself with your so called " scientific research"
      you are not a tinnitus sufferer, you are just a complete fool with not a cents of EMPATHY and cleverness, you don't want to support us OR HELP people here, you just want to show off because you are a pervert, just go to hell it's exactly the place where you belong and stay there FOREVER!!!!!
       
      • Like Like x 1
    13. attheedgeofscience
      Uninvolved

      attheedgeofscience Member Hall of Fame

      Location:
      Denmark
      Tinnitus Since:
      Childhood
      Cause of Tinnitus:
      Head Injury
      upload_2016-3-26_19-21-52.png

      Thanks for all your kind words. For your information, I recently helped a person from TinnitusTalk get into touch with a specialized tinnitus clinic. The waiting list is normally one year. But I was able to change that because of my connections.

      I have had tinnitus since I was six months old. Cause? A car accident. No child seats back in 1978 and so I hit my head.

      [OFFICIAL] Volkswagen: Eyes On The Road - VW AD
       
    14. Genevieve

      Genevieve Member

      Location:
      The Netherlands
      Tinnitus Since:
      12/2015
      Cause of Tinnitus:
      car accident
      As I can see people can be MEAN without saying any insults! I was not TEXTING, My man was calling me because he was under great STRESS and I know he wanted me to take the phone because he was depressed by the recent death of his father, it was dark and my only mistake was to want to take the call in order to reassure him, he was so stressful and he needed me. Alas my man called me at a very very bad moment, when the street had a slight turn that I didn't see because of the DARK. As I said in my introduction story I made a STUPID mistake I shoudn't have take this call and I should have stopped. BUT WE ALL MADE MISTAKES arent'we ? You can make a mistake too tomorrow, and you can feel guilty too for the rest of your life. My man felt also so guilty because of his call, I felt so guilty too. But, you see there is a GOD, my daughter was not injured, I was the one who was injured with an incurable disease, TINNITUS, are you happy with that? I bet you think it's funny and you are happy with that. It's not because you have had a car accident when you were a child and you still hate the person who did that to you and are responsible of your tinnitus that you have to HATE THE REST OF THE WORLD! My man said to me everyday, ' Why did I call you? I thought you were not in the car yet, If I hadn't call you, you wouldn't have had this stupid accident" he said that to me since december, and I said to myself, "WHY DID I WANTED TO TAKE THIS CALL FOR HEAVEN SAKE?? I SHOULDN'T HAVE DONE IT, MY ONLY ANSWER IS: HE WAS SO WORRIED AND IN PAIN THAT'S WHY I DID IT, BUT NOW IT'S TOO LATE TO TURN BACK TIME" And by the way if you have so many connections in the medical world with your great empathy and your great kindness for others maybe you can FIX MINE.
       
    15. Genevieve

      Genevieve Member

      Location:
      The Netherlands
      Tinnitus Since:
      12/2015
      Cause of Tinnitus:
      car accident
      Can you properly READ FRENCH?? Did you really understand the story of alexandre Thomas?? Do you know who is responsible of the worsening of his T&H?? Alexandre (and I know him) had a manageable/medium H&T untill he met the great Philippe Peinard who told him not to protect his ears anymore and to live a "normal life" His H&T worsened so badly after several months that his H&T became UNBEARABLE, just because he followed the advice of this great ENT, and those of " France Acouphènes " But for Peinard it's not a big deal, he has ruined his life and can go on with his great advices, and you dare to say that he is complaining? Maybe my English is not so good as yours but at least I try and if I can't understand a word properly I use google translate. It makes me cry when I see so much smallness/nastiness in a person, maybe with your "greatness and big connections" you can fix the H&T of poor Alexandre Thomas.
       
      • Like Like x 1

Share This Page

Loading...
Similar Threads
  1. Hotspur
    Replies:
    0
    Views:
    399
  2. jss
    Replies:
    5
    Views:
    597
  3. vickilynn
    Replies:
    7
    Views:
    662
  4. vboo2
    Replies:
    0
    Views:
    725
  5. John
    Replies:
    2
    Views:
    826
Thread Status:
Not open for further replies.
If you have ringing ears then you've come to the right place. We are a friendly tinnitus support board, dedicated to helping you discuss and understand what tinnitus treatments may work for you.