ROCHESTER — Miguel Rodríguez did not fear the brain surgery that would offer treatment for his tremors as a result of Parkinson’s disease.
The 49-year-old Puerto Rican native just wanted his life back.
"This has changed my life dramatically," Rodríguez said in Spanish during a March 31 interview at his brother and sister-in-law’s home on Conklin Avenue.
Milton Rodríguez said that when he visited with Miguel in 2003 and saw how his condition has worsened — he walked sluggishly and was dragging one of his feet — he promised to bring his brother to Rochester and find him treatment. Miguel Rodríguez was first diagnosed with Parkinson’s in Puerto Rico nearly a decade ago.
Doctors here were able to reduce his daily medication intake from 12 pills every four hours to four pills every four hours, he added. At the Clinton Family Health Center, the family inquired about a procedure to treat Parkinson’s that they had seen on a television health show, said Verónica Rodríguez, Miguel Rodríguez’s sister-in-law.
Veronica Rodríguez said the family was referred to neurologist Dr. Frederick Marshall, who explained to the family the deep-brain stimulation procedure. Conversations with a patient who had successfully undergone the treatment helped allay the family’s fears and concerns, she added.
Marshall, an associate professor of neurology with the University of Rochester Medical Center, said that doctors have been offering deep-brain stimulation — which occurs through electrodes implanted into the brain that are controlled by a pulse generator in the chest — since the Food and Drug Administration approved it more than five years ago. The university is one of 12 sites in the U.S. that conducts clinical assessments of the deep-brain stimulation technology, Marshall said, and more than 30,000 patients worldwide have been treated with this technology. Rodríguez is among the first few Latinos locally to have the procedure done, according to Marshall’s staff.
"This is not experimental surgery," Marshall noted. "It is a well-known and understood and commonly practiced modern medical approach. … We’re particularly excited to work with the Hispanic community."
Verónica Rodríguez said that it seemed the family felt more pain and anxiety than her brother-in-law did during the April 7 electrode-implant procedure, which was performed Dr. Jason Schwalb.
Marshall said that the two brain electrodes, which are placed in both sides of the brain, are controlled by an implantable pulse generator. This generator — the size of half a clam-shell-style cell phone — is similar to a pacemaker and is placed beneath the skin of the chest in a separate procedure.
"He was under no pain," Verónica Rodríguez said of her brother-in-law on April 11, adding that his physical activity — with fewer tremors — increased almost immediately after the procedure. He has been able to increase his physical activity so much that she said she feels the need to be constantly vigilant with him lest he overdo it.
Nowadays, Verónica Rodríguez added, one can even find him riding a bike, as his condition continues to improve thanks also to nearly daily physical-therapy exercises.
Marshall explained that the procedure starts with an out-patient assessment that includes an MRI, then the patient comes to the hospital for a CT scan. The CT scan is performed after a removable head frame is anchored into the skull with pins implanted into the bone, he said. The MRI and CT-scan images are superimposed on each other to create a mathematical model for the contents of the brain, Marshall said.
Then, the patient is taken to the operating room and the skull is numbed for the surgeon to make two burr holes through which the electrodes are implanted into a 6-millimeter-sized, almond-shaped section deep inside each side of the brain, he continued. General anesthesia is not used because the brain has no pain receptors, and the patient sits in a semi-seated, half-reclined position, Marshall added.
"The patient is awake," he said. "Patients need to be able to communicate with the surgical team about what they’re experiencing."
During a phone interview April 21, Rodríguez said that he was extremely grateful to his family and doctors, as everything had gone as well as expected during the two surgeries.
"It was an unforgettable experience," Rodríguez said about the operation.
Following the surgery, Rodríguez said he became overwhelmed with emotion upon seeing his brother and sister-in-law, who along with another sister-in-law, Jahaira Suárez, have been with him nearly every step of the way.
"I thought I would never see them again," he said on April 21, his voice cracking with emotion. "I felt very happy, quite glad."
Rodríguez suffers from an early onset of Parkinson’s disease, as the average age of patients with the condition is usually between 55 and 75, Marshall said. Parkinson’s is characterized by four main features — tremors, slowness of movement, rigidity of muscles and instability, he explained, with the lack of balance as the biggest struggle.
"It’s a vital function," Marshall explained without the aid of translator Alfredo Silvera, who was on hand during Rodríguez’s April 22 appointment at the doctor’s Westfall Road office.
Rodríguez said that he first went to doctors in Puerto Rico because of pain he felt in his left leg and was diagnosed with Parkinson’s following an MRI.
"Many people fear … undergoing this operation," he said before he went in for the first surgery. "I want the surgery so I’ll be able to work."
Because of the disease, he had to stop working as manager of a store in Ponce and has been unable to play drums with fellow musicians. More importantly, Rodríguez said that he wants to just be able to play again with is four children who live in Rochester. He also anxiously awaits when he can visit with his oldest daughter, Jahaira, who lives and attends college in Puerto Rico. Travel is not recommended for the few months following surgery.
"I want to play music again and be with my children," Rodríguez said.
Having completed both phases of the implant procedure, Rodríguez — accompanied by several family members — saw Marshall on April 22 for the initial programming of the electrodes to communicate with the pulse generator via radio waves. During Rodríguez’s visit, Marshall and nurse Carol Zimmerman used a long, handheld computer attached to a transmitter taped directly over the pulse generator. The computer communicates how frequent and wide the pulses should be and at what voltage and through which of the four silver-tipped ports at the end of the electrode they should travel. The electrodes are connected to the generator through an extension wire that surgeons run beneath the skin from the chest and behind the ear to the brain.
"Effectively, there are an infinite number of electrical choices we have to make, and it’s different in each person," Marshall said. "It’s not unusual for a person to take 12 hours over the first three months to craft exactly. But they can see the effects very quickly."
The programming involves the doctor starting at a baseline physical assessment and increasing the electricity one port at a time to measure the negative or positive effects of the pulses. The medical costs for the treatment are covered by most insurers, Zimmerman said.
The treatment does not represent a cure and the disease does continue to progress, Marshall noted.
"It’s symptomatic treatment. Hopefully, it offers some relief," he said.
For Rodríguez and his family, the treatment has already given him hope for a better future, they said. Following the April 22 session, Verónica Rodríguez said that her brother-in-law is already walking more fluidly and his tremors seem better. He even has referred another friend, who also suffers from Parkinson’s and is in his 50s, to Marshall.
"It’s a blessing," she said. "He is an inspiration."