Patient Voices - National Center for Rehabilitative Auditory Research (NCRAR)
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National Center for Rehabilitative Auditory Research (NCRAR)

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Patient Voices

NCRAR: Hearing, tinnitus and balance research ... with real life impact

These are real patients with real stories to share. Click on the video link of the person below to hear about their experience;

 
Brian talks about his tinnitus

Brian’s Story (short video, long video)

  • Brian struggles with tinnitus yet failed to recognize his hearing loss
  • When untreated, these conditions greatly reduced his quality of life

Lessons learned

  • It’s important to address/manage both hearing loss and tinnitus
“You're sitting in a room like this, this is peaceful for most people, this is a hell for people like me with tinnitus 'cause everything is screaming.” -Brian
 

Allyson's Story (short video, long video)

  • Allyson experiences hearing loss as a side effect from CF treatment
  • Before proper intervention, her hearing loss caused major distress

Lessons learned

  • Always ask about ototoxicity before beginning a new treatment
“I felt like I couldn’t go anywhere. I couldn’t go to school. I couldn’t get most jobs. I had no social life. I couldn’t even hear the smoke alarm... Everything was just way more difficult.” -Allyson

Allyson


Mike talking to camera

Mike's Story (short video, long video)

  • Mike has hearing loss and tinnitus
  • He did not know about these possible side effects until years after starting treatment for CF

Lessons learned

  • All CF patients should be told about possible hearing loss and monitored
“I was riding in the car with my fiancé next to me. Her parents were in the front seats, the windows were down, the wind was blowing in and the three of them were having a conversation and I didn't pick up a single word, couldn't participate at all.” -Mike
 

Deb's Story (short video, long video)

  • Deb received ototoxic treatment during two bouts of ovarian cancer
  • She was not evaluated or monitored for possible ototoxic effects during her original treatment and there was no ototoxicity program in place

Lessons learned

  • It is vital for those undergoing ototoxic treatment to be a part of a monitoring program, to minimize side effects that can greatly impair functional communication and cause isolation or distress
“If you’re not hearing well and you don’t treat the hearing loss, you tend to be more isolated and it can also enhance or escalate the cognitive issues that you may already be having with chemo treatment.” -Deb