thank you Ray..!
what courage you have, dear friend..
I am going to print this one for my mom..
hugs to you and Spike
tess

On Tue, Apr 1, 2008 at 10:06 AM, rayilynlee <[log in to unmask]> wrote:

> 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
> [log in to unmask]
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