Brushing your teeth. Drinking a coffee. Buttoning your shirt. Those are simple, basic daily activities that became virtually impossible for 74 year old Paul Schafer of Agawam as his severe essential tremors worsened over the years. Patients with essential tremors suffer the debilitating shaking characteristics that are commonly associated with Parkinson’s disease.
'Suffering in Silence' with Essential Tremors
“You usually don’t hear about them because they become withdrawn from society. They are too shy to appear in public or to attend any public events so they are kind of hidden but they are suffering in silence, basically,” neurosurgeon Dr. Mohamad Khaled said, referring to patients suffering from essential tremors.
“We all have different circuits in our brains that are responsible for different functions. If the circuit that is controlling movement goes haywire, we have problems with diseases like essential tremors or Parkinson’s disease or dystonia." says Khaled.
"If the circuit that is controlling movement goes haywire, we have problems with diseases like essential tremors or Parkinson’s disease or dystonia.”
Schafer saw multiple doctors for his condition over the years until being treated by Dr. Octavian Adam, a neurologist and movement disorders specialist. Dr. Adam used medications to treat the essential tremors, but without much success. That’s when he recommended that Paul and his wife, Kathy, consider undergoing Deep Brain Stimulation surgery. With Dr. Khaled newly hired at Baystate, the couple would not need to drive hours away to find a surgeon in Boston or elsewhere.
“It’s really a long trip and a lot of visits and a lot of time and some patients just give up on it because of how much time they have to devote to it,” Dr. Adam said.
“We talked about it, and in the end we were so dumbstruck because it sounds like something out of Star Wars..." - Paul Schafer
"We didn’t really know what was involved,” said Schafer. “We got more involved with it and met Dr. Khaled and he put us on to it, and it’s just amazing what happened.”
How Deep Brain Stimulation Works
Deep brain stimulation is a multiple step surgical treatment. The procedure involves drilling a small hole into the skull, under local sedation, and inserting electrical wires into the area of the brain causing the problem.
“There is no pain, you just feel vibrations just like you feel on your teeth when at the dentist. Actually, you feel less vibrations than when at the dentist because the brain is less sensitive to feeling than most people think,” Dr. Khaled said.
Dr. Khaled asks the patient to point a laser in the direction of the wall. As Dr. Khaled adjusts the electrical wires to target the appropriate circuit in the brain, the patient’s shaking hand slowly begins to stop so that the laser is directly pointed in one location. That’s when Dr. Khaled knows he found the “sweet spot” for the electrodes, and the patient suddenly is nearly cured of the tremors.
“The circuitry is in disarray, so you sort of shut that circuit down. Sometimes it’s like a radio dial – you need to dial it up or tune it down.” - Dr. Khaled
After a few weeks of healing, a second surgical procedure is completed to make the changes permanent. The wires are attached to a device implanted in the chest, which is programmed to send electrical impulses to the brain. These impulses block the brain signals causing the movement disorder.
“Once the pulse generator and battery is implanted, you can control from the outside with a remote control. Turn it off, turn it on, reprogram it, arrange how the electricity flows,” he said. “You can control the symptoms in different ways and avoid the side effects.”
Life Changing Results
Schafer has returned for several follow-up appointments with Drs. Adam and Khaled, and the procedure appears to be a major success. When the device is turned on, his shaking almost completely disappears.
“I was in the recovery room, I asked if my wife Cathy could come in and see what was going on,” Schafer said. “He gave me a flashlight, he said pretend it’s a mug. We took the flashlight and I put it up to my mouth like I was drinking and we both got tears in our eyes. It was unbelievable. I said it before, it’s like Star Wars and it’s just incredible. It’s just changed my whole life back to the way it was 20 years ago.”
Schafer's wife Cathy agrees, saying the procedure is astonishing: “I think it’s a miracle. It’s an amazing feat. I’m so happy that he’s had the opportunity to have it done. It gives him so much better quality of life. He has a wonderful sense of humor and he’s always been able to accept what happened with him and take it humorously and have everyone relax around him. But I knew it bothered him,” she said. “It’s made him 10 to 15 years younger in his attitude because now he goes out fully, completely aware of the fact that he can do whatever he wants to do whenever he wants to do it.”
Deep brain stimulation is currently FDA approved for treatment of dystonia, essential tremors, and Parkinson’s disease, and obsessive compulsion disorder. The procedure is also being investigated for the treatment of depression and Alzheimer’s.
“I think every time you have a patient that goes through this surgery, it reminds you how effective this surgery is and how life-changing it is,” Dr. Adam said. “I’m happy that we have Dr. Khaled here with his expertise to make it possible.”