12:12 PM PDT, June 16, 2022
A Minnesota woman has a rare ear disorder that leaves her extremely dizzy and causes her to hear sounds coming from inside her body.
Stephanie Schmitz of Maple Grove, MN, has what is now known as a form of superior canal dehiscence syndrome. This means that she has a hole in one of her ear canals. However, the location of the hole in Schmitz’s ear canal is on her posterior canal, making her condition more complex.
“You’re not used to hearing people that hear their eyeballs move and hear their eyes blink and hear their neck creak … or they can hear their footsteps in their ear, they hear their heartbeat,” Schmitz told Fox 9 News.
The condition has affected her day-to-day living functions. Schmitz and her family take certain precautions in order to accommodate her. The house stays as quiet as possible, the dishwasher runs after bedtime, and cabinet doors close softly. The simplest sounds can leave her dizzy and can even leave her bedridden.
“Sounds will make me dizzy. Sometimes it’s people’s voices. Sometimes it’s a fire truck driving by. It can be the simplest thing. I can barely stand to hear my son laugh, and I think that’s what’s really hard for me because that’s what my life is — taking care of him,” Schmitz told the local news station.
Schmitz’s 9-year-old son, Jaxon, understands that he can not ask her to go places, like the skateboard competitions he competes in, because she can not handle the noise.
“My mom just got so many fun things taken away from her,” Jaxon shared with Fox 9 News. “(But) I would rather not do something fun and just make her sit home and rest cause I know how hard it is.”
Over the past seven years since she first started getting randomly dizzy, her condition stumped doctors. Schmitz has had to learn to rely on earplugs and switch jobs in the meantime.
“I truly remember being on my knees and praying like, ‘please help me figure out an answer. I can’t live like this forever,’” she said to Fox 9 News.
“It breaks my heart,” said her boyfriend, Lee Anderson. “Any kind of gatherings — holidays, Christmas any kind of things with families — we obviously limit our exposure to all the noise,” he told Fox 9 News.
Schmitz’s only option is out-of-state surgery, which she would have to pay tens of thousands out of pocket. There is no guarantee that the operation would work and she would risk possibly going deaf, according to Fox 9 News.
On top of this condition, Schmitz battled and defeated thyroid cancer last year. “What I often tell people is I would absolutely do that 10 times over again before I would want to live another day with this, hands down,” Schmitz told Fox 9 News.
Until she finds treatment and relief, Schmitz spends time with people she loves when she feels well enough to do so.
To raise awareness and funds for Schmitz’s condition, Anderson set up a GoFundMe page.