A Texan, 25, who underwent experimental brain surgery to DEAF himself. A cancer survivor brought to the brink of suicide: the cruel reality of living with a rare condition that makes even the faintest sound like a bomb exploding in their ears
David Vance beat stage 3 cancer and survived grueling chemotherapy and radiation treatments. But a rare hearing disorder became too much for him and in 2018 he attempted suicide.
The 40-year-old resident of Ontario, Canada, now lives an isolated life with pain hyperacusis, an uncommon condition for which there is no cure or treatment
Turning a page sounds like a bomb going off in someone’s ears. Music sounds like an ice pick for the eardrum; a siren like a rocket launched from just half a meter away.
He wears industrial-grade earmuffs when he leaves the house, but even in the comfort and quiet of his own home he is not spared from the pain. He said, ‘I have to go out into the world, I have to face pain, face noise and face noise and enjoy making war.’
Meanwhile, Andrew Johnston, 25 from Texas, has just undergone experimental brain surgery in an attempt to make himself deaf, something that may not be feasible due to the risk of damaging other nerves in the area.
Andrew Johnston, left, said his pain hyperacusis was caused by extremely loud noise during a football match, and ‘usually just a lot of bad luck’
David Vance has pain hyperacusis. To cope with the pain, he wears earplugs under ear muffs when he leaves the house
The sound of washing dishes and showering is painful. Even putting a mug on the table causes excruciating pain.
Hyperacusis yes considered rarewhich affects one in 50,000 people.
There is no known cure or proven effective treatment for the condition.
Doctors may try benzodiazepines, which relieve anxiety, or sound exposure therapy, which focuses on changing the emotional response to noise by continuously exposing the person to sounds.
Some people, including Mr Johnston, try acupuncture, which involves inserting very thin needles through the skin at strategic points on the body. Although there is some evidence that acupuncture can be used to treat pain in the sinus area and ear canal, Mr Johnston said it did not work for him at all.
The increased sensitivity to sound is usually caused by injury caused by exposure to extremely loud noise or a gradual deterioration of the complex and delicate structure of the inner ear.
Mr. Vance spent 20 years as an MC at electronic dance music concerts, pumping up crowds and creating his own songs.
He said, “I spent twenty years of my life sitting next to heavy bass and loudspeakers all the time, and fifteen of those years three or four times a week.”
All those years of exposure to extreme noise took its toll on his hearing.
Mr. Johnston attributes his condition to a loud NFL game he attended two years ago. The pain from the damage to his inner ear became so intense that he had to drop out of college with only one semester left and move in with his supportive parents.
He said: ‘It’s not really something you can compete with. You just have to avoid all the noise to keep the pain at a minimum.”
He described the pain as if hot lava was poured into his ears. Speaking to DailyMail.com, he said he had considered surgically anesthetizing himself “since the very first days of this stuff.”
Johnston underwent experimental surgery to make himself deaf. Doctors at a Texas hospital severed the intermedius nerve, which provides pain sensation to the inner ear
‘There’s just no point in living with this condition.’
He made the radical decision to undergo a procedure to cut the cochlear nerve
He added: ‘I tried to quietly rest for two years and see if I would recover, but it actually just got worse. That’s why I decided to experiment with operations.’
The surgery is both rare and experimental. Generally, surgeons perform procedures to improve a patient’s hearing loss, but do not complete them.
The cochlear nerve is the primary nerve responsible for transmitting auditory information from the cochlea, the hearing organ in the inner ear, to the brain.
Doctors at a hospital in Texas tried to cut it, but were unable to due to its proximity to nerves responsible for balance and the sense of taste.
Instead, they cut the nerve intermedius, which provides pain sensation to the inner ear.
“Purely experimental,” Mr. Johnston said.
“We’ll see if it works, if not I will have another operation later this year to remove the cochlear nerve,” which will leave him deaf.
Mr. Vance’s hearing problems accelerated shortly after he was diagnosed with non-Hodgkin’s lymphoma in his chest in 2017 and began chemotherapy and radiation treatments.
One day, after completing a three-month treatment regimen and returning to work as a waiter in the fine-dining industry, the noise from the busy Toronto restaurant, with glasses and plates clinking, became overwhelming. He decided to seek professional help.
Finally, a doctor determined the likely cause. Vance had to have teeth removed before starting chemo – a measure to reduce the risk of infection if the teeth are unhealthy.
But that procedure changed the positioning of his temporomandibular joints (TMJ), whose changing position could potentially affect surrounding structures and cause muscle tension in the jaw, potentially irritating nerves closely related to the auditory system , which can lead to increased sensitivity to sound.
He said: ‘At first it was just a nagging, burning pain and now it feels like it has only gotten worse over the years due to medication I’ve taken to help it and more noise trauma. So now it feels like I’m burning lava acid in my ears.
“One day it might burn, it might hurt. One day it might feel like stabbing and my whole face and head go up in pain too, from my neck to my shoulders and it’s all burning and painful.
He added: “Every sound ignites it. My coffee cup might even fall on the wooden table. It’ll just be some shooting pains, like in those areas.”
There is no cure, nor are there many treatments to choose from.
Dr. Kimanh Nguyen, a Los Angeles-based otolaryngologist, told DailyMail.com: As far as treatment goes, it’s difficult. If the hyperacusis becomes very bothersome, there are (cognitive behavioral therapy) or tinnitus retraining therapies. This is a treatment process that trains your brain to become more accustomed to the ringing, roaring, or buzzing sounds in the ears.
David Vance lives a largely isolated life. When he does have to leave the house, he wears earplugs under thick earmuffs.
Meanwhile, Mr Johnston insists that deafness is preferable to the daily excruciating pain of his condition, which he also likened to lava flowing into his ears.
He said: ‘I don’t really think living with the condition is an option. That’s why I try to experiment with different things. Hopefully in the future someone can build on my data and save themselves if I can’t find a breakthrough.’
One type of age-related damage is called superior canal dehiscence, which occurs when the bone that sits on top of the superior semicircular canal, one of three fluid-filled canals in the inner ear that are important for balance and spatial orientation, becomes worn. decreases with age.
Hyperacusis can also arise from damage to the auditory nerve, which runs between the ear and the brain.