Focused ultrasound was approved as a treatment for essential tremor in 2016. It utilizes sound waves to target and burn tissue deep within the thalamus (in the middle part of the brain) to stop tremor. The thalamus is the relay station for motor and sensory signals. The patient has their head shaved and wears a stereotactic frame during the procedure. In 2023, the US Food and Drug Administration (FDA) approved bilateral FUS, allowing patients to treat the second side (usually the non-dominant side) of their body, thus managing their ET in both hands.
The first-hand account below comes from one of our ET support group leaders who shared her story of having bi-lateral FUS to help others understand the process.
By Rita Sevart
Wichita, KS ET Support Group Leader
“We have to wake up the right side of your brain.” Those are the words my occupational therapist used to start my treatment after I had my 2nd side Focused Ultrasound (FUS) procedure this summer. I had my first FUS performed for the right side of my body three years ago and had tremendously good results. There were small balance issues. At that time, I only had physical therapy, and the therapist had never heard of essential tremor (ET). On her own time, she read all she could and quickly became acquainted with the focused ultrasound process and was able to help me become almost whole.
In waiting three years for the FDA to approve 2nd side FUS, there were times I forgot I had tremors until I tried to do tasks two-handed. Holding a sandwich, typing with both hands, playing the left-hand on the piano, and cutting fabric brought the symptoms back in a flash or a shake. Then in the spring issue of Tremor Talk magazine, I noticed the headline about FDA approval. Immediately, I placed a call to the neurology department at the KU Medical Center in Kansas City, KS, where I had the first FUS procedure. They had an appointment available in July. The interview/screening was the same process I had the first time, including the handwriting portion which did not work at all since this was my non-dominant hand (my left hand). The doctor said I was a good candidate, and the procedure was scheduled for August. I then had another CT scan to make sure my skull was the correct thickness.
The day of the FUS, the prep was the same as before, but it had been three years and I was three years older. The prep seemed much harder. Two things I did beforehand made me better prepared. I had my hair cut really short. The head shaving was still rough since I don’t have a smooth skull. The second was that I wore Depends. I remembered that in the previous procedure, I had to run to the restroom right afterward. I didn’t want that. What made this even more important was a “battery” of some sort was laid on my bladder and that didn’t feel good.
A “halo” was screwed to my head. Novocaine deadened that, but then a plastic “hat” of ice water was pushed on my head to counter the heat from the Insightec MRI machine. Although, I was uncomfortable, the all-female team was highly professional and it seemed like a routine procedure, making me feel more secure. MRIs are always noisy and this one equaled that, even with earplugs. The first 15 minutes were the worst since they had to test for the right insertion point. I was told beforehand to keep my eyes closed. Then the actual procedure started, and it definitely was loud, but they stopped at intervals to check my writing and hold a bottle to my lips. In between, I felt that I was floating and dreaming. Then the nausea came and I stopped them. They used a suction tool like a dentist uses and I thought, “That isn’t going to be enough when I start to vomit.” Luckily, it was just phlegm and they were able to continue. When they checked my writing of scrolls, lines, and initials one more time, they pronounced it finished and they all cheered. I cheered inside.
Part TWO – Recovery
The procedure had lasted from about 1 pm until 3:30 pm. I don’t remember much about recovery, except getting into the car from the wheelchair. I was told I slept all the way to the hotel, about 30 minutes away. Then I slept until the next morning. Breakfast was wonderful, and then we drove home.
A month later, at my follow-up with the surgeon, I had tremors still in the left hand and the anxiety that is common with ET. I guess I really wanted this to work. The tremors were very slight, and of course, I couldn’t write on the test (since this was my non-dominant hand). I was assigned to do physical therapy for my balance. The walker was getting a workout. My cats loved to get a ride on it and their weight helped steady me. Since then, I have gone to occupational therapy for my left hand. It has been a tremendous help. Those games of putting pegs in the hole, coloring with my left hand, doing sign language, and other activities have brought my hand back to typing, playing piano, and sewing. And my hair is growing back at a fast pace.
My general practice physician said I was braver than him, but there’s no bravery involved when you want your life to be normal. If you’re suffering in your daily activities, give Focused Ultrasound serious consideration.