It was Christmas morning in 2018, and Karen was in her kitchen trying to make huevos rancheros. The Mexican breakfast dish was a tradition she always made for the family, but this year it wasn't working. Her hands were shaking so badly that she couldn't fry the eggs. After ruining three or four eggs in a row, her daughter-in-law stepped in and asked if she could help. Karen was devastated.
It might seem like a minor thing to not be able to fry eggs, but for Karen it was the culmination of several years of a neurological disease called essential tremor that kept getting worse. It was like the last straw in a long list of things that the tremor had slowly taken away: eating soup with a spoon, drinking with just one hand, signing her name on her checks, and favorite hobbies like landscape and wildlife photography.
Karen first noticed the tremor in her 30s. It was minor at the time, but she knew it would get progressively worse. She had watched her mother's tremor gradually increase as she got older, and her brother had it as well.
The word "essential" in essential tremor means that doctors don't really know what causes it. However, it does tend to run in families, which was true for Karen. A neurologist prescribed medication to slow the progression of the tremor, which worked for many years.
Then Karen was diagnosed with breast cancer in 2018. She needed surgery, chemotherapy, and radiation. That treatment is hard for anyone, but for her, there was an added hurdle.
"The chemotherapy made my tremors significantly worse," Karen said. "I could not write anything, and I had never been unable to write before that. I thought when the chemo finished it would go away—that it was just a side effect."
But even post-cancer treatment, the extreme tremor persisted.
"We don't know why chemotherapy treatment made Karen's tremor worse," said Dr. John Rolston, formerly director of functional neurosurgery at University of Utah Health. "Anything that causes stress in your brain—like lack of sleep or anxiety—can make an essential tremor worse. Chemotherapy causes extreme levels of distress for your body."
Dr. Rolston works with Dr. Matthew Alexander, a neurointerventional radiologist in the Departments of Radiology and Imaging Sciences and Neurosurgery at U of U Health, to perform focused ultrasound procedures.
Karen was desperately looking for solutions. The medication she was on stopped working, and she was withdrawing from her life. She was embarrassed to go out with friends or do anything in public where people would see the tremor and watch her struggle. She skipped work-related travel and trainings because she couldn't take any notes. Within just one year, she was becoming increasingly isolated.
She researched treatment options but wasn't interested in more invasive surgeries like deep brain stimulation. Eventually, she found information about the focused ultrasound procedure available at U of U Health.
The idea of using focused ultrasound to alter tissues isn't new in the medical field, but it has only been a treatment for essential tremor for about three years. Researchers learned that the procedure could be used in the brain for this condition. U of U Health soon became the only site in the Mountain West region offering this minimally invasive essential tremor treatment.
During the procedure, an MRI takes pictures of the brain and sends them to doctors in real-time. The patient wears a helmet to keep their head still while about 1,000 focused ultrasound beams hit a small and specific section of tissues in the brain. The beams destroy a small area of tissue.
Karen reached out to U of U Health to schedule an appointment with Dr. Rolston and find out if she was a good candidate for focused ultrasound. She had to take several tests, including an MRI and CAT scan, as well as a balance test. When they were done, she learned that she was a good candidate.
Not everyone can benefit from a focused ultrasound procedure. Some people have tremors that the ultrasound won't fix, but Karen was likely to see significant improvement. She was thrilled and scheduled it as soon as she could get in, which was March 2020.
Then COVID-19 hit and procedures like Karen's were put on hold. She had to wait over three months, but eventually rescheduled for July 1.
When she arrived, doctors reminded her that focused ultrasound required shaving her whole head—a part of the procedure that makes some patients think twice. For Karen, though, it was nothing new.
"One of the nurses reminded me that I had to have my head shaved, and I said it was no big deal because I had just grown it back after chemo," Karen said.
At the beginning of the procedure, doctors had Karen write her name and draw a spiral on a piece of paper. These two tests are repeated multiple times during the procedure to provide a real-time assessment of whether the focused ultrasound is hitting the right spot in the patient's brain.
Once she had the helmet secured to her head with screws, they put her into the MRI tube. They sent the first dose of ultrasound into her brain, then pulled her out and did the assessments again. If they could see some improvement in her ability to write her name or draw a spiral, they would know it was the right spot. Then they add more intensity to destroy the small section of tissues completely.
It's a delicate balance that requires skilled surgeons with experience in focused ultrasound procedures.
"Precision is important because the brain is complex and sensitive," Dr. Alexander said. "We really need to be within millimeter accuracy to get the right spot. If we are a little bit off to the side we could cause weakness, instability, and balance issues."
After going into the MRI tube multiple times, Karen took one final assessment for her writing skills. She was able to write her name perfectly and draw a spiral with precision.
She could only get one side done—her right side—because it is her dominant hand. There is no research to indicate whether it's safe to do it on both sides of the brain yet. But that could change in the next few years, with trials underway to find out whether treatment is possible on both sides of the brain.
"When I first learned about focused ultrasound procedures [at U of U Health] it sounded like a dream," Karen said. "Now that I had a chance to get the procedure done, the word that comes to my mind constantly is just that it's a miracle."