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NCRAR: Hearing, tinnitus and balance research ... with real life impact
These are real patients with real stories to share. They are thriving! Here they discuss how they discovered rehabilitation for hearing loss and tinnitus, and its importance for their quality of life. Click on the video link of the person below to hear about their experience.
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 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
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 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
