You're welcome.  If you have any questions don't hesitate to ask.
Ray
Rayilyn Brown
Board Member AZNPF
Arizona Chapter National Parkinson's Foundation
[log in to unmask]
----- Original Message ----- 
From: "Moneesha Sharma" <[log in to unmask]>
To: <[log in to unmask]>
Sent: Tuesday, April 01, 2008 11:17 PM
Subject: Re: my DBS for CNN.com


> Thank you for sharing this.
> Moneesha
>
>
> On Tue, Apr 1, 2008 at 10:36 PM, 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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