In 2004 I wrote this for CNN.  Thought it might answer some questions re my 
PD and DBS experience:

 'I had brain surgery while I was awake'
Parkinson's sufferer talks about treatment that improved her life
By Rayilyn Brown for CNN

Thursday, November 10, 2005 Posted: 1224 GMT (2024 HKT)

Rayilyn Brown: "Medical technology has enabled me to continue to live on my 
own, with my dog Spike."
Image:

(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 called 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 often choke on too much mucous. I am a retired 
high school history teacher and I can't travel anymore, but I still swim and 
go on a treadmill and can enjoy my two backyard putting greens for about 10 
minutes.  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 been 
turned off, usually caused by contact with magnets, which serves to remind 
me of how far I have come.

I don't take any Parkinson's  meds since Sinemet only helped me once and 
others - agonists and combos  like Stalevo didn't help.
Rayilyn Brown
Board Member AZNPF
Arizona Chapter National Parkinson's Foundation
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