My good friend Ron Budra, who thankfully doesn't suffer from this disorder, nevertheless watches over me. He sends this from the Naples News:
July 20, 2017
Naples News..
Karl Wiedamann’s quality of life has made a remarkable comeback.
The retired engineer in Naples recently returned from Delray Beach on Florida's east coast where he underwent a noninvasive treatment to reduce tremors.
Before the outpatient treatment for essential tremor — a common movement disorder that affects 10 million Americans — he could not draw lines within the confines of a circle on paper. His signature was a mess.
Today he can lift a glass of wine with one hand. He can enjoy soup again. His signature has never been so good.
“I’m a happy camper,” the 79-year-old said.
What he’s most anxious to do again is swim competitively. He’s competed in national and world events, including the 2008 FINA World Masters Championships in Perth, Australia.
He grudgingly gave up matches when he feared falling from the starting block and disqualifying.
Wiedamann underwent focused ultrasound, a noninvasive MRI-guided procedure. The treatment effects are immediate.
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Karl Wiedamann shows the difference in his fine motor skills before and after the procedure. Wiedamann recently underwent an outpatient procedure that is a combination of MRI and high-intensity ultrasound to treat his essential tremor so he can use his hands. (Photo: Katie Klann/Naples Daily News)
The system delivers ultrasound energy to a tiny part of the brain that is linked to tremors. The ultrasound waves destroy the abnormal brain cells. The system is called Exablate Neuro and is manufactured by Dallas-based Insightec.
The company got FDA approval in July 2016 for treating essential tremor, which causes trembling in hands, the head, legs and voice.
According to the Focused Ultrasound Foundation in Charlottesville, Virginia, there are 41 manufacturers of focused ultrasound technology worldwide for treating various cancers and conditions. In the U.S., focused ultrasound systems are being used in 49 medical centers for treating uterine fibroids, bone cancer pain, prostate cancer and essential tremor, according to the foundation.
Clinical trials for patients with Parkinson’s disease have been conducted, but the findings have not been finalized, said Dr Timothy Meakem, chief medical officer with the foundation.
The potential uses with focused ultrasound are vast, and the foundation was created in 2006 to help move its scope forward. He draws a parallel to how MRI technology changed diagnostics.
"We believe focused ultrasound will have the same impact once its fully realized," Meakem said.
A big catch is that Medicare has not approved focused ultrasound for treating essential tremor, he said. Some patients are waiting for the approval or paying out of pocket, he said.
Karl Wiedamann shows the difference in his fine motor skills before and after the procedure. Wiedamann recently underwent an outpatient procedure that is a combination of MRI and high-intensity ultrasound to treat his essential tremor so he can use his hands. (Photo: Katie Klann/Naples Daily News)
Wiedamann decided not to wait and paid $29,000 out of pocket. He isn’t looking back.
“It was not cheap but worth it,” he said.
On average, patients see a 50 percent reduction in tremors, said Dr. Travis Tierney, a neurosurgeon with the Sperling Medical Group in Delray Beach. He treated Wiedamann.
“I think patients are just very impressed with the results they get,” Tierney said. “Most of the patients had significant reduction” in clinical trials.
The advantage of focused ultrasound is that patients don’t need an incision in the skull, which is necessary with deep brain stimulation, or DBS, Tierney said. In addition, DBS carries a 1 percent risk of stroke and 4 percent risk of infection, he said.
On the other hand, the results with DBS are more effective than with focused ultrasound.
“Patients are sold on this,” Tierney said. “Patients don’t want a hole in their head.”
He was introduced to focused ultrasound at Brigham and Women's Hospital in Boston, one of the clinical trial sites for the Insightec system.
Patients are fully conscious of the MRI scanner and have to spend about 2½ hours in the scanner wearing a metal frame and helmet.
The neurosurgeon uses the head gear to zero in on an area of the brain — the thalamus — which controls some involuntary movements.
Having patients awake is crucial for feedback to make sure the ultrasound energy is hitting the right spot. If the patient feels something in his or her hand, an adjustment is needed, Tierney said.
The treatment consists of 1,024 beams that generate enough energy to ablate the targeted tissue.
The neurosurgeon gives four 10-second bursts of the ultrasound energy to kill the tremors, and then there is a cool-down step for the scalp, he said. Patients feel a pressure coming in the skull, which is the ultrasonic energy hitting the target in the brain.
“We do warn them it is not pleasant, but bear with us,” Tierney said.
A downside is that treatment is limited to one side of the brain hemisphere, so you have to make a choice which side to treat. Typically, the choice is to reduce tremors in the right hand, for those who are right-handed, so the treatment is to the left side of the thalamus in the brain.
Patients can get one treatment and come back six months later to do the other side, Tierney said.
Clinical trial results have found the tremor reduction is maintained one year after treatment; two-year outcomes are being submitted now and show tremor reduction is holding, Tierney said.
“The tremor control is not going to get worse, but the disease progresses,” he said. “You have to treat patients again in a couple of years. But at two years, the tremor control is the same as at three months.”
In Wiedamann’s case, he was diagnosed with essential tremor 15 years ago and was treated with medication. A few years ago, he had to stop taking the medication because it reduced the effectiveness of other medication for deep vein thrombosis.
He figured he would have to live with his tremors after ruling out invasive surgery.
Wiedamann’s path to the new treatment started about two years ago when a friend sent him a copy of a news article out of Israel about clinical studies with the Insightec system.
“At the time I couldn’t find anyone in the U.S." doing it, he said.
Karl Wiedamann holds up a piece of paper showing his more-controlled handwriting since he had his procedure. Wiedamann recently underwent an outpatient procedure that is a combination of MRI and high-intensity ultrasound to treat his essential tremor so he can use his hands. (Photo: Katie Klann/Naples Daily News)
He considered traveling to Israel but found online that there were 10 clinical studies underway at leading hospitals in the U.S. A local neurologist suggested getting involved in a study at the University of Virginia.
He waited and found the system had been approved and that Sperling Medical group was offering it. He didn’t hesitate to make the appointment.
Not all patients with essential tremor can be treated; that is determined by a skull density screening, Tierney said. About 10 percent of patients can’t have it because of the amount of marrow in the skull, which can diffuse the ultrasound energy.
Wiedamann couldn’t be happier with his results. He no longer has to use both hands to lift a glass. Friends who were aware of how his tremors were affecting his life are astounded.
“They can’t believe it,” he said. “They can’t believe it.”
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