Calming a Neurological Storm

If you’d walked a mile in Cindy Sutter’s shoes before her deep brain stimulation (DBS) surgery this summer, everyday tasks would have been a frustrating, exhausting struggle.

Brushing your teeth, eating, buttoning your shirt, putting on jewelry or makeup, drinking from a cup, writing and a myriad of other tasks would have been a challenge because of pronounced rhythmic tremors in both hands. The reason – essential tremor (ET), a neurological disorder much more common than Parkinson’s disease, its better-known cousin.

“I’ve had it [ET] for the last 30 or 35 years,” says Sutter, 65, a recently retired paraprofessional at Colonial Northampton Intermediate Unit 20. “The past 10 years have been the worst.”

Sutter, a Monroe County resident, says she discussed DBS surgery with Behrang Saminejad, MD, before the COVID-19 pandemic, but at the time it would have meant traveling to Hershey or Philadelphia. When the pandemic waned, the situation was different because DBS surgeon Greg Davis, MD, had joined Lehigh Valley Fleming Neuroscience Institute. His first DBS surgery at Lehigh Valley Hospital–Cedar Crest came in December 2022.

Sutter discussed her condition with Dr. Saminejad, Movement Disorders Chief with Lehigh Valley Fleming Neuroscience Institute, and Dr. Davis and decided to go ahead. Surgery through the Hoffman Family Deep Brain Stimulation Program occurred in July.

“It was so bad I couldn’t type anymore,” she said. “I couldn’t even color in a coloring book with  my grandkids.”

About 10 million people in the U.S. have essential tremor, compared to about 1 million with Parkinson’s. Actress Katharine Hepburn was one of the more famous people with essential tremor. DBS surgery was approved by the Food and Drug Administration for ET and Parkinson’s in 1997.

“It makes you not want to go anywhere,” says Sutter. “It killed my social life. People notice and stare and make comments. That’s the worst, food was either all over my face or all over my clothing.”

Prior to surgery, Sutter also spoke with other DBS patients. “I just couldn’t function anymore. When it gets to the point where you can’t eat or drink, it’s time,” Sutter says.

“Cindy was on medication, but it was not effective for her severe hand tremor, which was interfering with her quality of life,” says Dr. Saminejad.

Long before performing a DBS surgery, Dr. Davis studies the patient’s MRI images to plan the operation. “When I get to the operation, I already have a target in mind,” Dr. Davis says, adding he also has a safe entry planned into the patient’s brain to avoid blood vessels and other critical areas.

DBS surgery involves the placement of electrodes in the brain, which are connected to a small battery-operated electric pulse generator about the size of a stopwatch that is implanted in the chest.

“There’s something really special about DBS when you can change someone’s life for a prolonged period through several hours of surgery. That’s why I really enjoy doing what I do, especially deep brain stimulation.” Behrang Saminejad, MD, Movement Disorders Chief with Lehigh Valley Fleming Neuroscience Institute

In DBS surgery, patients are given an anesthetic “scalp block” that numbs the scalp while the surgeon makes the entry holes into the skull. In this stage, the patient is in what’s known as twilight, sedation similar to that used in other procedures, such as a colonoscopy.

Dr. Davis inserts electrodes into the brain to get recordings of electronic signatures of different tissues within the brain. Based on those readings, Dr. Davis knows where to position the electrodes. In Sutter’s case, electrodes were placed on both sides of her brain, though that’s not always the case with DBS surgery and is patient specific.

In this stage, patients like Sutter are fully awake. They must be awake so surgeons can determine the effect of the stimulation from the electrodes. “We turn it on and test. We’re looking for the effect of the stimulation. We want to make sure the tremor is suppressed,” Dr. Davis says. “We’re also looking for side effects. That’s really one of the big reasons we do it this way.”

Sutter says that during surgery, she spoke with Dr. Davis and his team, drew a circle, wrote her name and more. “It was the best feeling in the whole world,” she says.

“The effect is dramatic,” says Dr. Davis. “It’s part of why I chose to do this. This is a specialty that very distinctly has happy patients. The mechanics of this kind of surgery is not something that is appealing to most neurosurgeons.” DBS surgeons like Davis are relatively few compared to the overall number of neurosurgeons.

DBS patients don’t leave the hospital with their DBS system functioning. That’s because doctors must wait for brain swelling to go down and for scar tissue to encapsulate the electrodes. Patients then go to the DBS clinic, where neurologists fine-tune the settings on the pulse generator to achieve optimal results.

Sutter also has head and neck tremor and was receiving botulinum toxin treatments for many years to help quell those symptoms. DBS surgery for ET is for tremor of the extremities and typically does not have a large effect on head and neck tremor. Sutter says she’ll continue to get the botulinum toxin treatments.

“Her head tremor has not improved as much as we would have hoped for through surgery, but it was a secondary target. Fixing the hand tremor was the most important part for her, which has significantly improved,” Dr. Saminejad says.

Dr. Saminejad says not everyone who might be a candidate for DBS surgery chooses to go through with the operation. Because DBS surgery is elective, patients make their own decision based on input from doctors.

“Cases like Cindy’s help others learn about it and how it can be helpful,” Dr. Saminejad says. “Lehigh Valley Fleming Neuroscience Institute has a list of DBS patients who are willing to speak with those considering the surgery. In addition, we have our own DBS navigator who is with the patient every step of the way.”

DBS surgery isn’t the first choice for all ET patients. Dr. Saminejad says for some, medication can result in a significant improvement in quality of life. Each case is unique.

Sutter says she’s proud to have made the decision to have DBS surgery and says her adult daughters share in that pride. Life has changed for the better. Those without ET may not understand the toll it takes on someone with the condition, she says.

“It’s really empowering for both the patient and the doctor when a patient comes in, they have severe tremor, they have a hard time walking, and by the end of a few hours, they are at least 50 percent better,” Dr. Saminejad says. “There’s something really special about DBS when you can change someone’s life for a prolonged period through several hours of surgery. That’s why I really enjoy doing what I do, especially deep brain stimulation.”

“I can’t say enough about this program. It’s wonderful,” Sutter says. “I couldn’t ask for a better experience.”