Boston Marathon Bombing Survivors Deal With a Lingering, Invisible Injury — Tinnitus

Discussion in 'Support' started by Stink, Apr 17, 2015.

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    1. Stink

      Stink Member

      Location:
      US
      Tinnitus Since:
      09/2000
      Dave Fortier.jpg
      Dave Fortier survived the 2013 Boston Marathon bombing but still suffers from tinnitus, a ringing sound that doctors once told him would go away within a few days.

      Dave Fortier was about to finish his first marathon when he saw a huge flash of light off to his left.

      “As I was looking at the arches and looking where I was going to be going, that’s when everything changed,” he remembers. “I was knocked sideways. I ended up on the ground over near the grandstands, with just this muffled noise and this ringing in my ears.”

      He could see people screaming, but he couldn’t hear them. “I did see the second explosion," he says. "I did feel it, but I really couldn’t hear it. It sounded like a distant gunshot.”

      At some point, Fortier looked down and saw a pool of blood forming around his foot. He’d been hit by shrapnel, and was taken to the hospital.

      "I still remember talking to the doctors about my — about the noise, this ringing, when does it go away?" he said. "And they said, 'Yeah, it should be gone within a couple of days.' And it is still as loud today as it was two years ago."

      That ringing sound is called tinnitus, and it's one of the most common injuries to emerge from the 2013 Boston Marathon bombing. Even as the attack caused hundreds of traumatic and very visible injuries, tinnitus is an unseen malady that is still significantly disrupting the lives of victims.

      In Fortier's case, while his hearing is better, he says it still sounds like he's always next to a fluorescent bulb. It’s especially bad when he’s in a quiet place. At night he tries to drown out the sound with classical music using headphones.

      "The hardest part comes when it does wake you up," he says. "It becomes very difficult to get back to sleep, so it’s broken sleep."

      But tinnitus isn't easily fixed. "This is a pathology that’s rooted in the brain," says Daniel Polley, a research scientist at the Massachusetts Eye and Ear Infirmary. "It is not amenable to surgery, nor is it really ideally suited with some broad-spectrum pharmaceutical. We need to come up with another approach."

      That’s what Boston-area hospitals are trying to do. The One Fund, which has been paying for the continued treatment of bombing victims, found that at least 100 of them suffer from hearing damage, including tinnitus. The fund is paying for a program at Massachusetts General Hospital that’s teaching meditation and other methods to help reduce the stress of tinnitus.

      The fund is also paying for a clinical trial of two technology-based interventions at the Massachusetts Eye and Ear Infirmary, led by Polley.

      “We believe that the brain is the most sophisticated machine in the universe and we want to take advantage of its own wiring to try to fix itself,” he says.

      In order to do that, Polley needs to tap into the brain when it’s most open to being rewired. "We need to coax the adult brain into an environment where it feels like it’s being challenged, that there’s something at risk — that it stands to benefit or might get punished,” he says.

      That's exactly what video games do, so Polley's team created one. The game is played on a tablet computer, and it turns the specific sound of the user’s own tinnitus into the enemy. Polley shows me how to trace the outline of an invisible shape on the screen using just the sounds I’m hearing. The goal is to reconstruct a broken-up picture, using only sound as my guide.

      “They’re learning to sort of isolate it from the other sounds and suppress it,” Polley explains.

      There’s no guarantee the game will work, so the dozen or so bombing victims participating in the trial so far are also trying out something that’s been studied a bit more: music therapy.

      Polley explains that tinnitus is caused by damage to neurons associated with certain frequencies of sound. Those neurons become overactive, causing feedback, which is what they’re hearing. The music therapy filters the music and omits the frequency of each person's tinnitus.

      “As a result, the other frequencies, not the tinnitus frequencies, are used a little bit more in hearing the music,” Polley said. That advantages those neurons, and gives them the opportunity to move in and take over, hopefully turning down the volume on the over-active neurons creating all that noise.

      Sitting in his Beacon Hill kitchen, bombing victim Steven Reny shows off the music therapy program.

      "Now I have a choice between a couple of music programs," he says. "I’ll go into Spotify and I can listen to any music I like. ... Simple as that, I’m listening to music and getting therapy at the same time."

      Reny was with his wife and daughter on Boylston Street two years ago to see his other daughter finish the marathon. The daughter standing next to him got the worst of it, with bad leg injuries. Reny and his wife were also hit with shrapnel.

      “My eardrums were blown out by the sound wave of the blast," he said. "I don’t remember hearing it as much as the feeling of pressure in my ears that swept over me."

      Ever since that moment, Reny has suffered from significant hearing loss. His own voice now sounds weird to him, when he talks. He also has tinnitus in a grating, unpleasant, high pitched tone.

      “It’s a nuisance," Reny said. "It’s bothersome. It’s a subtle reminder at times, and a more direct reminder of what happened that day. All things that you’d like to put behind you.”

      Reny is hoping to turn down the volume on that terrible reminder. And in the process, he hopes his contribution to the study may ultimately help the millions of others who are looking for therapies to reduce their own hearing problems.


      http://www.pri.org/stories/2015-04-...vors-deal-lingering-invisible-injury-tinnitus
       
      • Helpful Helpful x 1
      • Informative Informative x 1
      • Optimistic Optimistic x 1
    2. valeri

      valeri Member Benefactor Team Awareness

      Location:
      Australia
      Tinnitus Since:
      09/2011
      Oh God!
      When will medical world wake up and stop paying for crap habituation tools instead of putting money towards finding a cure:mad:
       
      • Agree Agree x 9
      • Winner Winner x 1
    3. undecided
      Fine

      undecided Member

      Location:
      Greece
      Tinnitus Since:
      04/2014
      Cause of Tinnitus:
      Unknown.
      Indeed.
      Everything about that article is just sad.
       
      • Agree Agree x 1
    4. nills
      Barefooter

      nills Member Benefactor

      Location:
      Belgium
      Tinnitus Since:
      11/2009
      Cause of Tinnitus:
      acoustic trauma
      to know investors just fueled Spotify with 500 million dollars and than reading this is a bitter pill to swallow.
       
      • Agree Agree x 1
    5. valeri

      valeri Member Benefactor Team Awareness

      Location:
      Australia
      Tinnitus Since:
      09/2011
      Seriously who on earth makes these stupid decisions???
      Where's all this crap coming from?
       
    6. LeQuack
      Scared

      LeQuack Member Benefactor

      Location:
      United States of Europe
      Tinnitus Since:
      2005
      Cause of Tinnitus:
      Bad luck and bad genes
      It's also just the fact that they always label tinnitus as a mere nuisance, something that just bothers you a bit, like an itch. But in reality it's much more serious.
       
      • Agree Agree x 6
      • Like Like x 1
    7. marqualler
      Nerdy

      marqualler Member Benefactor

      Location:
      Minneapolis, MN
      Tinnitus Since:
      10/2014
      Cause of Tinnitus:
      Ear infection / Mild Noise Induced Hearing Loss
      Thanks for sharing this @Stink--I was about to share it myself.
       
    8. Ricky81
      Worried

      Ricky81 Member Benefactor

      Tinnitus Since:
      July 14, 2014
      Cause of Tinnitus:
      Assault/Contusion/Ear Infection
      The problem is non tinnitus people simply don't care because they cannot relate to our pain.

      Even non tinnitus doctors, They might look at, evaluate us, tell us we are healthy and when we ask about our tinnitus, most docs are clueless and tell us some generic verbiage.

      We need dedicated T sufferers, docs, neurosurgeons, scientists, top pharmacists, chemists etc to come together and find a solution.
       
      • Agree Agree x 1
    9. linearb
      Psychedelic

      linearb Member Hall of Fame

      Location:
      East Coast USA
      Tinnitus Since:
      1998
      • Helpful Helpful x 1
    10. Teri
      Artistic

      Teri Member Benefactor

      Tinnitus Since:
      4/2014

      I agree.
       
    11. Tinnitus Talk
      Balanced

      Tinnitus Talk Knowledge Base

       
    12. PaulBe

      PaulBe Member Benefactor

      Location:
      Cairns
      Tinnitus Since:
      11/2013
      Cause of Tinnitus:
      Probably sound, though never proven
      I've placed this quote elsewhere, but I thought you'd get a bitter laugh from it Val. Its from a well paid idiot in NSW and was published in the Law Society Journal. He's a lecturing Otolaryngologist in Newcastle (though I think he's in Sydney now).

      "Because severe tinnitus is very rare and only likely
      to occur in those who are already psychologically
      imbalanced
      , the issue of compensation is a
      questionable one, argues DR SYLVESTER FERNANDES."

      so tired. so very tired. Still so far to go....
       
    13. Ears Hurt

      Ears Hurt Member

      Location:
      USA
      Tinnitus Since:
      10/2012
      Cause of Tinnitus:
      Whiplash or Buzzer (abuse from ex)
      How disgusting to read that... I had a co-worker call me a liar yesterday undermining my tinnitus. People don't understand until they deal with it. It sucks being in work today with people thinking so negatively of me.
       
    14. NineNails

      NineNails Member

      Time to cause some damage, I'd say.
       
      • Like Like x 1
    15. Pb1

      Pb1 Member

      Tinnitus Since:
      01/2016
      "Because severe tinnitus is very rare and only likely
      to occur in those who are already psychologically
      imbalanced
      , the issue of compensation is a
      questionable one, argues DR SYLVESTER FERNANDES."

      Oh man that is frickin hillarious. I've always thought I'd never wish T on anyone, but this guy comes seriously close!
       
      • Like Like x 1

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