'I had brain surgery while I was awake'
Parkinson's sufferer talks about treatment that improved her life
By Rayilyn Brown for CNN
Rayilyn Brown: "Medical technology has enabled me to continue to live on my own, with my dog Spike."
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(CNN) -- Rayilyn Brown, 69, has lived with the debilitating symptoms of Parkinson's disease for nearly a decade. Two years ago, she underwent a treatment call deep brain stimulation, which, along with "brain pacemakers" have improved her quality of life. Here is her story:
I was diagnosed with Parkinson's disease at the age of 60. That was 10 years ago and at the time, I swore I would never have deep brain stimulation (DBS) surgery. DBS involves having holes drilled in your skull and electrodes placed in the brain -- while you are awake -- to control the tremors.
I had surgery twice in my late 20s for an abdominal condition and again in my early 40s after being diagnosed with ovarian cancer. I had suffered tremors on my left side, caused by the Parkinson's, for seven years and when I started getting them on my right side, I reluctantly starting investigating DBS.
I surfed the Net and met a woman from Arizona who had the surgery done at Scripps Clinic La Jolla in California. After more research, I made an appointment and had my part-time caregiver drive me the 76 miles from my home in Murrieta, also in California. I saw Thomas Waltz, head of neurosurgery at the clinic.
On 26 June 2003, I had my head shaved and then put into an iron "halo" to hold it still while I had an MRI scan, which the surgeon used to navigate the electrodes. A shot of Novocain, a local aesthetic, was put in my scalp, but I could still feel it being cut open. I could also feel and hear the drilling of the two holes. Dr. Waltz said I had an exceptionally thick skull. After the holes were drilled, it took a couple of hours to place the bundles of electrodes in an area of the brain called the subthalmic nucleus (STN), which is over stimulated in patients with Parkinson's disease. My left foot, which had been turned inward from dystonia, straightened out on the operating table and is straight to this day. They knocked me out to sew up my scalp and when I woke up, I threw up.
On 3 July the same year, I was again hospitalized. This time I had a "brain pacemaker" installed, which uses wires and a battery source to stimulate deep parts of the brain with electric currents. There are leads from the electrodes that go under your scalp and look like huge veins that go down your neck and hook up to electronic devices in the chest -- how they get those leads into the chest is really beyond me.
Dr. Waltz decided to put an implant in just the right side of my chest -- the right brain controls the left side of the body. He wasn't satisfied with the placement of electrodes in my left brain, and I would have to have it redone. But even with just the one implant, the shaking on the left side of my body stopped immediately.
Early in September 2003 I had the redo: the whole iron halo procedure all over again. Although I could feel the surgery, it did not hurt, as the brain feels no pain. I was never afraid -- in all honesty, I hoped I might die during these procedures because my quality of life beforehand was so poor. But I sailed through them.
The most common risk with DBS is infection -- and I believe the mortality rate is very low. About 18,000 people in the U.S. with Parkinson's disease or essential tremor have had this surgery since it was first done about a decade ago by a French doctor. I know of an 18-year-old who lives in my area who had dystonia so bad that he was constantly in a fetal position. After having DBS surgery, he is at last OK.
The tremors were always the worst symptom and the ones that bothered me the most. Medical technology has enabled me to continue to live on my own, with my dog Spike. I can barely walk or talk, my hands are like paws because my fine motor skills are gone, I have double vision and choke on too much mucous. I am a retired high school history teacher and I can't travel or read anymore, but I still swim and go on a treadmill. I did not get my life back with DBS, but my life would have been impossible without it. A couple of times the implants have accidentally turned off, usually caused by contact with magnets, which serves to remind me of how far I have come.
I have recently applied to become a research subject at Dr. Woo-suk Hwang's renowned Seoul National University in South Korea, considered the "hub" of stem cell research. I know a cure won't come in my lifetime, but it will come eventually and I would like my life to be worth something.
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