Life-changing surgery helps woman with rare form of tinnitus
TORONTO -- For six years, Sandra Miller suffered with a constant noise in her head – a whooshing sound like a heartbeat in her ear – that was unrelenting and debilitating.
“It drives me crazy,” Miller said. “You just want it to stop but there’s nothing you can do to make it stop.”
Her doctors suggested it was caused by stress and treated her with powerful pain medications.
“I had many doctors laugh in my face and tell me I was crazy, and basically tell me that I had to live with this,” Miller said. “I did have moments where I thought about ending my life ... because there were parts where it drove me crazy and I just thought I couldn’t handle it anymore.”
A physician passing through Schreiber, Ont., where Miller lives, suggested getting her condition examined by specialists at Toronto Western Hospital, where doctors had a specialized clinic to assess and treat problems of the ear. Miller said it was a two-year struggle to get that referral, but when she got in, it changed her life.
“I was overwhelmed with emotion and excitement that I had finally met people who believed in me and believed what I was telling them,” Miller said, adding that her situation took a huge toll on her family as well.
Miller suffers from a form of tinnitus called pulsatile or rhythmic tinnitus. Those with this form -- about 5 per cent of all cases -- hear a rushing, wave-like sound that’s often synchronized to their heartbeat.
It’s estimated that over 400,000 Canadians have this more rare form of the disorder.
According to data collected by Statistics Canada, 9.2 million Canadians have some form of this phantom noise, with most hearing a high-pitched hissing, buzzing or ringing in the ear. For this there are few treatments.
But for pulsatile tinnitus, there are often physical causes. Doctors test for high blood pressure, thyroid disorders or tumours growing around blood vessels near the ear.
Miller was assessed by doctors at the University Health Network’s Centre for Advanced Hearing and Balance Testing clinic.
There, doctors used specialized brain scans to find the defect. A key blood vessel draining blood in her brain had narrowed to just 20 per cent of its original diameter. The blood from her brain was squeezing through a much smaller channel.
The result: turbulent blood flow that doctors suspected was the source of the noise she was hearing in her head.
“This is new knowledge,” said Dr. Vitor Pereira, the neurosurgeon at Toronto Western Hospital who treated Miller. “Not everyone knows how to prescribe the right imaging to detect this.”
A LIFE-CHANGING TREATMENT
Pulsatile tinnitus caused by these vein abnormalities is one of the most treatable types of the condition says, Dr. Pereira. Doctors can insert a metal stent into the malformed vein and restore normal blood flow and pressure in the area.
“Until the last five years, we didn’t really understand a lot of the dynamics of blood flow within the brain and how it got out of the brain … certain treatments like stenting, for example, can actually get rid of some of the pulsatile noises that patients have,” said Dr. John Rutka, an ear, nose, and throat specialist at the University Health Network who screens patients for the source of the tinnitus.
Doctors say that in in the right cases, the treatment can help stop the pulsating noise in over 90 per cent of patients.
Sonia Clark was one of the first patients treated in Toronto. She was hearing what she described as ocean waves in her ears whenever she would lie down to try to sleep.
“Swish, swish, swish. It was like a flow of liquid going constant to the beat of my heart,” Clark said.
Doctors discovered a narrowed vein in the lower part of Clark’s brain near her right ear. They also tracked the blood flow with a computerized program that simulated the sound she was hearing for ongoing research.
In October 2018, doctors inserted a metal stent into Clark’s vein, normalizing the blood flow. She hasn’t heard the distressing sound since.
“I guess I am proof that it can cure it, basically.”
Doctors need to listen to patients and investigate, said Pereira, noting that when a fixable cause is identified, it can completely change someone’s life.
“You see how much they suffer to get to here, and most of the cases they wake up and they don’t hear the sound that disturbed their lives for many years,” said Pereira shortly after Sandra Miller’s surgery last month.
He inserted a seven-millimetre-by-40-millimetre stent into her narrowed vein near her right ear. Within a day, the relentless whooshing in her head was gone.
“It was a very emotional time. I hadn’t experienced that in six years,” Miller said, describing the relief she felt.
“It was amazing … it was silence, complete silence.”