When Judy awoke the morning after undergoing deep brain stimulation surgery, she saw her surgeon standing at the foot of her bed.
"Judy, you made history yesterday," Dr. George Mandybur told her. "You are the first person to have deep brain stimulation surgery while asleep at an adult hospital in Cincinnati."
Judy, who has Parkinson's disease, took her historical role in stride. "All I know is that I felt like a different person," she recalls. "I felt so much better."
Deep brain stimulation surgery, traditionally performed while patients are awake but now also done while they are asleep, is not a cure for Parkinson's. But it has extended Judy's quality of life by reducing her symptoms, especially her tremor, rigidity, and bradykinesias, or slowness of movement. As her son happily observed, "Gosh, Mom, it doesn't take you 10 minutes to get out of the car anymore."
Judy also has been able to get back to her gardening and to her "happy place" in her yard.
Judy was in her mid-60s when she was diagnosed with Parkinson's, a progressive disorder involving the loss of dopamine-producing brain cells, in 2014. Her Parkinson's was idiopathic, meaning it began for no known reason. She recalls that her paternal grandfather "shook," but no one ever stated that he had Parkinson's disease.
Most patients diagnosed with Parkinson's experience reduced symptoms when prescribed carbidopa-levodopa, a drug combination that boosts dopamine in the brain. But Judy had a variant of Parkinson's that prevented her from getting any relief from the drug. "Nothing seemed to work," she says.
Researching DBS surgery
Several years after her diagnosis, and after spending a year with a second neurologist, Judy began researching deep brain stimulation, or DBS. "That's when I decided to pursue it," she says. "I read books, anything I could find online about DBS. I shared the information with my family, and they supported whatever I decided. The final decision was mine to make. I researched the pros and cons of having DBS, and I researched the surgeon. I made up my mind that I was ready to proceed with it."
Judy went back to her original neurologist, who then put her in touch with Dr. Mandybur, one of the region's most experienced DBS surgeons.
By this time Judy's symptoms had become disabling. Her tremor, which began on her left side, had progressed to the right side. She felt heightened anxiety, depression. "I couldn't do much of anything because the tremor was so bad," Judy says. "I couldn't cook or write. I spilled things. I needed help putting things in or taking things out of the oven. It was dangerous. My whole body was shaking terribly."
DBS surgery involves the implantation of electrodes that deliver electrical signals to an area of the brain called the subthalamic nucleus. An area the size of a jelly bean, it is responsible for movement. The electrodes are connected to a stimulator device that resembles a pacemaker and is implanted under the collarbone. When the electrodes are placed in the optimal position, Parkinson's symptoms such as tremor subside.
For many years DBS surgery was performed only while patients were awake. By communicating orally with the patient, the surgeon received instant feedback about the electrode placement's effectiveness, ensuring delivery to the optimal spot. Dr. Mandybur has performed more than a thousand awake DBS procedures during a career spanning more than two decades.
Asleep DBS is now an option
More recently, surgeons have been able to perform DBS surgery with MRI-guided technology. That technology, the ClearPoint® Neuro Intervention System, became available in late 2018 at The Jewish Hospital – Mercy Health.
"Dr. Mandybur reassured my husband and me that whether I was awake or asleep didn't really matter, that the percentage of successful outcomes was about the same," Judy says. "I was at the point where I was going to do it either way. I just wanted to have it done."
Judy's procedure, which took about 4 hours, went as planned. Since the initial "honeymoon period" when her tremor completely vanished, Judy's tremor has returned, though to a much lesser degree. Judy is working with a nurse practitioner to fine-tune her stimulator, a process that can take 6 months to a year, and she is working with a physical therapist to help her with balance.
Overall, Judy's quality of life has improved immeasurably. She planted flowers this spring and has been able to spend time working in her yard.
"I chose to have DBS and I have not regretted it," Judy says. "I have gotten back to doing many things that I was not able to manage on my own."
Judy is grateful to Dr. Mandybur and the nurses and surgical team at The Jewish Hospital. For patients who follow in her footsteps, she offers these words of wisdom: "Do your research. Trust your doctor. And as my husband always says, don't be afraid to ask for help. I've never been one to ask for help, but now I need to. I can do more since my surgery, but from time to time I still need help from my family and friends."
~ Cindy Starr
Hope Story Disclaimer -"Judy's Story" is about one patient's health-care experience. Please bear in mind that because every patient is unique, individual patients may respond to treatment in different ways. Results are influenced by many factors and may vary from patient to patient.
"...Dec. 11, 2018 [is] a day that is not easily forgotten. That is the day when DBS therapy went into my brain, a day that changed the quality of my life ... I understand that DBS is not a cure. But it has given me a new lease on life. Now every day is precious, and my husband and I are enjoying life more. I am more independent and confident that with my excellent support team my future is brighter. Thank you again for your dedicated professionalism." ~ Judy's letter to her surgeon, Dr. George Mandybur