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Tess, how is Mom doing and how are your plans going? Ray Rayilyn Brown Board Member AZNPF Arizona Chapter National Parkinson's Foundation [log in to unmask] ----- Original Message ----- From: "tess owens" <[log in to unmask]> To: <[log in to unmask]> Sent: Wednesday, April 02, 2008 10:32 AM Subject: Re: my DBS for CNN.com > 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] >> ---------------------------------------------------------------------- >> To sign-off Parkinsn send a message to: mailto: >> [log in to unmask] >> In the body of the message put: signoff parkinsn >> > > ---------------------------------------------------------------------- > To sign-off Parkinsn send a message to: > mailto:[log in to unmask] > In the body of the message put: signoff parkinsn ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn