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Tinnitus awareness week

April 27, 2012 15 Comments

We have been buried this last month, but I couldn’t be more proud of our team…we are becoming experts at understanding how much is currently known about tinnitus, both its measurement and how it effects patients…we are meeting with the FDA on May 1st and have prepared a response to the NIH to support getting a funding approval for our NIDCD grant.  We have spent about 1000 man hours preparing this 3 page letter…send us good vibes for the Council Review on May 30th.

This week is Tinnitus Awareness Week, here is a sample proclamation from the ATA.  I think the ATA does a great job raising awareness for this horrible condition.

WHEREAS, Tinnitus, often defined as “ringing in the ears,” causes a person to hear ringing, buzzing, or a variety of other sounds without an external cause, and to have a heightened sensitivity to sound; tinnitus can be a debilitating condition, reducing the quality of life for those chronically affected; and

WHEREAS, Tinnitus is most often the result of extreme noise exposure from either a single impulse noise or the accumulation of noise exposure, but may also be caused by conditions such as an ear infection, the use of certain medications, a blocked auditory tube or canal, or a head injury; and

WHEREAS, As many as 50 million Americans experience tinnitus to some degree, of those, approximately 16 million have chronic tinnitus and seek medical attention for their condition, and nearly two million are debilitated by tinnitus; and

WHEREAS, According to the National Institute for Occupational Safety and Health, the maximum allowable noise exposure is 85 dBA for eight hours and, even at that level, an individual can sustain hearing damage; even though there are recommended maximum allowable exposure times, cumulative noise exposure over several years, even at safe levels, can cause tinnitus; and

WHEREAS, Americans live in an age of amplified sound where many everyday noise sources produce decibel levels that can be hazardous to our hearing, resulting in tinnitus or other types of hearing loss; some everyday sounds that exceed the allowable noise exposure level of 85 dBA include those from a blow dryer, subway train, power lawn mower, chain saw, jackhammer, screaming child, rock concert, thunderclap, jet engine and an MP3 player; and

WHEREAS, The Army is the only branch of the military that requires earplugs as part of a recruit’s uniform, but many types of military equipment exceed the 85 dBA limit, including an Apache helicopter, a nine millimeter pistol and a grenade; as a result, in at the end of 2011, over 840,000 American veterans were service connected for tinnitus; and

WHEREAS, Tinnitus is the number one service-related disability suffered by military personnel returning from the current conflicts in Iraq and Afghanistan; by 2014, the United States Department of Veterans Affairs will be paying nearly $2.2 billion in tinnitus disability compensation annually to this country’s veterans; and

WHEREAS, Even with a combination of public and private funding, only 10 million dollars is spent on tinnitus research in the United States, far less than what is spent on research for most other medical conditions; and

WHEREAS, Current therapies used to treat tinnitus cannot permanently rid a patient of the condition, and not all tinnitus patients benefit from the different treatments currently available, but new, sophisticated brain-imaging technologies have allowed researchers to identify the areas of the brain that involve tinnitus and have led scientists to study tinnitus on several new fronts; and

WHEREAS, Tinnitus is a condition that can affect anyone, young or old, and increased public awareness of the condition’s debilitating effects should be promoted to encourage both public and private health care organizations to provide funding for continuing  research on ways to alleviate the symptoms of tinnitus, and to find a cure for this incapacitating condition; now, therefore,

BE IT RESOLVED by the (House or Senate or other government agency/body) of the State of:_______________

1.    This (House/Assembly/Legislative body) hereby declares the week of May 13 through May 19, 2012 as “Tinnitus Awareness Week” in the (State/town/city/county) of XXX to promote public awareness about the debilitating effects of tinnitus in order to encourage both public and private health care organizations to provide funding for continuing research on ways to alleviate the symptoms of tinnitus, and to find a cure for this incapacitating condition.

2.    The (Governor/Commissioner/other elected or appointed representative) is requested to issue a proclamation calling upon public officials and the citizens of this State/County to observe “Tinnitus Awareness Week” with appropriate activities and programs.

3.    A duly authenticated copy of this resolution, signed by the President of the (Senate or House or other legislative body) and attested by the Secretary of the Senate, shall be transmitted to the American Tinnitus Association.

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  • Sal Gentile

    Will, I have this proclamation and have raised over $4400.00 for ATA in Florida. Doing a 100 mile bike ride on May 19, 2012 during Tinnitus Awareness week and have also sent 2 Mayors proclamation in Tampa, FL and they are signed for a National Tinnitus Awareness Day, Sal Gentile

  • http://www.facebook.com/bluethundr Tim Dunphy

    Great post will! Congrats to your team for their hard work. Best of luck with the NIDCD grant.

  • hellouser

    Godspeed, Will! I really hope you can get the tinnitus treatment out the door and to people like me that suffer from it. Thank you for all your efforts!

  • http://profile.yahoo.com/BLB3SPEOH5OQCAEQLJT75RAX5U MANUEL

    Will , double step please , we really need this

    • http://www.facebook.com/bluethundr Tim Dunphy

      Hi Manuel.. I really believe these good folks are double stepping like no one else on this issue. :)

  • Chip Frank

    Will, Do you know if it might be possible to use Transcutaneous Vagus Nerve Stimulation (t-VNS) for the Serenity System at some point?  Here’s a link to a company that has developed this type of medical device.  http://www.cerbomed.com/Main.html

    • Achilles

      I was thinking about this also - it’s much less invasive than VNS, and has shown similar results thus far in epilepsy and depression.  There is currently a study being done by Cerbomed to assess the effectiveness of t-VNS for tinnitus.  However, it doesn’t look like they are pairing with stimulation with tones as in the Microsponder trial.  Dr. Langguth is the lead investigator in this trial, who is a colleague of Dr. De Ridder.  The study is scheduled to be completed within the next 2 months.  It will be interesting to see the results of these two studies! 

      • http://www.facebook.com/bluethundr Tim Dunphy

        wow… a horse race to the cure for T. my money is on microtransponder.. but please I hope the cure comes soon for everyone that has this deplorable condition.

  • SISKO

    @all: I know 3 people who took part in the t-vns therapy or trial for tinnitus.

    2 of them didn’t have any positive effect unfortunately.
    The other reported some slightly positive result as reduced tinnitus.

    But I doubt that it results of that stimulation personally.

    Also it seems that this company focused more on depression an epilepsy.
    Off course testing in combination with defined sounds or like micro transponder is doing is worth to try.

    But till now there is no feedback or reply from Will for this.

    Best to All

    • Chip Frank

       SISKO, Did the three people you know say that they didn’t listen to paired tones/sounds along with the electrical stimulation?

    • Will Rosellini

      I’ve been following the progress of transcutaneous VNS. I am also of the inclination that tinnitus sufferers deserve numerous shots on goal to get a cure, so I’m hopeful for all potential therapies. My understanding is that a company in Europe has developed an external stimulator that stimulates a branch of the vagus nerve near the ear. It is unknown if only stimulating this branch of the vagus has the same effects as stimulating the vagus nerve. MTI-UTD has looked at a number of animal studies where we look for less invasive areas of the cranial nerves, all of them were unsuccessful. It would obviously be great if VNS could be done non-invasively but have the same benefit.

      Here is what I know about the small pilot study in Europe that was recently published…

      The study followed 10 patients to see if tVNS worked similarly as VNS for epilepsy. However, 3 patients stopped using the therapy (30% dropout rate) and another two reported some painful stimulation. Of the 7 patients who were able to use the device, two had significant increases in seizures and three had significant decreases in seizures based on the patient seizure diaries. In general, quality of life, cognition, and depression were unchanged. Additionally, tVNS therapy requires a significant commitment from the patient in terms of use – they must remember to use the stimulation 3 times a day for 60 minutes, every day, in order to maintain any benefit.

  • guest___

    Here it is the link of the conference where they talked about it: 
    http://www.brai2n.net/tri2012/session5.html
    Let’s wait to see what Will says…

    • Chipfrank

      I think that it did work.  We can’t expect the therapy to eliminate tinnitus 100% in the first 10 patient pilot study.  This is a brand new technique which needs to be tested further and improved through both continued animal studies and more clinical trials including a larger number of patients.

      The most difficult part in assessing the results for tinnitus therapies is that tinnitus is a completely subjective phenomenon, which can’t be objectively measured to a reliable degree of accuracy.

      I’m not entirely sure how to intrepret the published results, but it appears that, on average, the 10 patients included in the pilot study had a reduction of ±50% in their tinnitus annoyance/volume?

      Some clarification / comments from Will would really help.

  • http://www.facebook.com/bluethundr Tim Dunphy

     I wouldn’t go so far as to say that it didn’t work. I’ve done some
    reading on this and it seems like a very promising technology (along
    with rTMS which you also might want to google along with the term
    tinnitus). 

    But my guess on all the radio silence on this blog is that the business
    end of this treatment is having a difficult time getting off the ground.
    Let’s face it. Advanced tinnitus is a purely subjective condition
    that’s difficult to relate to. It has to be an extremely tough sell
    because the people who have the money to invest have other higher
    profile diseases on the radar (like parkinsons and and ALS among others)
    and must find it impossible to understand even why this would be a
    problem for anyone. After all, tinnitus is just a light ringing in your
    ears that you hear when you’re trying to sleep at night or after a rock
    concert. Right? Well, yeah, it’s not like that at all for me either.

    It’ll probably take at least one or two (if not more) human trials in
    addition to rat studies over the course of the next few years before the
    business community will start to see value in treating this condition. 
    Along with a greater understanding of the issue that will come from
    seeing how it affects higher visibility groups like veterans returning from Afghanistan and Iraq.

    It’s as hard for me to be patient about this as it is for anyone. My
    case is very advanced and quite severe. All we can do is muster as much
    patience as we can and wait for the world to catch up with this
    discovery.   And hope.

    I talk a little more about this in my own blog. 

    http://snjh.net/blog/?p=12

    There, I’ll plan to talk as much as I can about my journey with this disorder along with chronicling my attempts to start my own website known as jokefire.com (affectionately known as JF). Both curing my tinnitus and starting this website are rather enormous bucket list items. Both efforts, sadly, are not going too well… lol :)

  • Oconnorj70

    Hello,
    My name is John and I have a quick question about your blog! Could you please email me?
    Thank you,
    John