Bionic musician: Miraculous cure restores oboist’s ability to make music

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Dr. Nathaniel Whitney screws a “cage” onto Merley’s skull before his surgery in 2012. Surgeons were able to identify the exact location where Merley’s brain was over-firing and causing his hands and arms to shake when he played his oboe. (Sherry Parmater photo)

When the Glacier Symphony conductor cues principal oboe player Reid Merley to blow an A — that unmistakable standard pitch by which the orchestra tunes — Merley is in perfect control of the note.

But it wasn’t that long ago that a mysterious medical condition threatened to undo his musical career.

Thanks to a couple of skilled neurosurgeons and a medical device that had been used exclusively by patients with Parkinson’s disease, Merley is making music again.

One might call Merley a bionic musician. During the unusual surgery, neurosurgeons placed a stimulator in his brain while he played the oboe so the doctors could pinpoint the area of the brain causing the tremors that plagued him only when he played his musical instruments.

The procedure implanted electrodes in his brain, producing an electrical stimulus to regulate abnormal impulses. A pacemaker-like device was placed under the skin in his upper chest and is attached to a wire that travels under the skin, connecting to the electrodes in his brain.

The regulating device can be turned up or down.

“When I turn on the machine, I feel it in my body. … I stop breathing for a moment and I get an electric buzz on my right side,” he said.

About seven years ago, medical researchers discovered a condition called musician’s focal dystonia. It’s a tremor that occurs only when a musician is in position and playing an instrument. That discovery was fortuitous for Merley, who began showing signs of the condition in 2007.

One day Merley and fellow orchestra oboist Sherry Parmater were rehearsing together, and she noticed Reid was having trouble holding his instrument still.

“I was shocked,” she recalled. “We were practicing with an accompanist and he was playing an English horn solo. I looked over and his hand was shaking and I thought, ‘What is that?’ The next day we were playing the concert and he was playing a flute and he couldn’t keep the flute to his mouth. I had never seen anything like it until that day. His arms were suddenly shaking a lot.”

The mysterious tremor began to exhibit itself, appearing only when Merley brought his oboe, or any of the other wind instruments that he frequently is called upon to play, into position and began to blow into them.

It came seemingly from out of nowhere, with no other symptoms. Merley said that until that day, the tremor had never happened while he was in a concert situation. He was understandably extremely upset.

At the time, Parmater and Merley were living together in Wyoming, where she was executive director of the Wyoming Symphony. The symphony conductor suggested he see a neurologist, who diagnosed it as an essential tremor and prescribed anti-tremor medications. But the medications didn’t help much.

About a year later Parmater found a book, “Musicophilia: Tales of Music and the Brain,” by neurologist Dr. Oliver Sacks.

Parmater pored over the book and had an “aha” moment when she came to the chapter describing musicians who shook when they were playing. When she read that researchers had discovered musician’s focal dystonia, Parmater remembers exclaiming, “Oh my God, Reid, this is what’s wrong with you!”

Early on, treatment was limited to anti-tremor drugs and possibly cutting muscles and nerves to reroute the impulses. But the cure seemed almost worse than the disease, and Merley was reluctant to go down that path.

Shortly afterward the couple moved back to Kalispell and Merley, an Army veteran who had played the oboe as well as tenor drum and piccolo with the 6th U.S. Army Band in the mid-1970s, persuaded local officials to help him get treatment at the Veterans Affairs hospital in Helena.

He had some relief with anti-tremor drugs, enough that he could continue, with increasing difficulty, to play his oboe with the Glacier Symphony in 2009.

The difficult reality of his situation came to a head in summer 2010 when he was scheduled to solo with the Festival Amadeus orchestra.

“I was rehearsing with the quartet for my evening concert and I couldn’t keep my oboe still,” Merley recalled. “Reluctantly I had to cancel my performance.”

The talented musician, a 1983 graduate of the San Francisco Conservatory of Music who later played eight years with the Master Sinfonia Chamber Orchestra, stopped playing his instrument completely. Merley, who had played the oboe since age 11, thought his music career was over.

“I was ready to put it on the back burner,” he confided.

MERLEY kept exploring new avenues of treatment and in 2011 he went to the VA hospital in Portland to a newly opened movement disorder unit. The doctors experimented with several new drugs, including injecting Botox into his arms. But none of them stopped the tremors.

Parmater remembers her frustration with the treatment.

“He went through a huge amount of trial and error and nothing really helped,” she said. “I just knew from reading ‘Musicophilia’ that he had musician’s focal dystonia, which is centered in the brain, but they kept insisting it was a nerve disorder.”

A breakthrough came when Merley was referred to Kalispell neurosurgeon Dr. Benny Brandvold. During the exam, Merley and Parmater told him how the tremors only happened when he tried to play his oboe, and Brandvold agreed that the symptoms were caused by a malfunction in Merley’s brain and not from prior neck injuries.

“Dr. Brandvold wrote a letter to the VA with his diagnosis, and it was then that they started talking about doing deep brain stimulation surgery on me, which is a treatment used for Parkinson’s patients,” Merley said.

In winter 2012 he went back to the Portland VA hospital and met with neurosurgeons Dr. Justin Cetas and Dr. Nathaniel Whitney.

Both doctors were experienced with deep brain stimulation surgery on Parkinson’s patients.

However, neither surgeon had performed this procedure on a person with musician’s focal dystonia. It differs in that the brain over-fires in a specific location, similar to a circuit that has worn out from years of repetitive action, such as bowing a violin or holding the mouth precisely to create the perfect note.

In Merley’s case, the surgeons would need to identify the exact target location where his brain was over-firing and causing his hands and arms to shake when he played his instrument.

The only way to find that spot was for him to be awake and playing his instrument as they probed his brain. After consulting with doctors at Johns Hopkins University and the Mayo Clinic, leaders in this type of procedure, the surgery was scheduled.   

Parmater accompanied Merley for the first hours of the pre-surgery where a “cage” was screwed onto his skull so his brain could be accurately targeted. After the surgeons exposed his brain, they called for Parmater’s oboe and gave it to Merley to play to reproduce his tremor.

As he played, the tremor began. His doctors were able to find the spot, and the tremor went away.

“When they hit the right spot and the tremor went away, he just kept playing. We had to tell him to stop,” Parmater recalled with a laugh.

Eight hours into the surgery, the chief neurosurgeon came out and broke the news of a complication. The wire running from Merley’s brain to the stimulator box had broken somewhere in his neck, so the surgery was redone over another six hours the next day.

Parmater has noticed Merley’s musical ability has gotten better and better as he fine-tunes the device to achieve the best results.

“His playing is so much stronger now than a year ago,” she said. “At Festival Amadeus this summer, he was just better than ever.”

Merley, principal oboe player with the Glacier Symphony, has musician’s focal dystonia, a tremor that occurs only when a musician is in position and playing an instrument. 

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