 |
 |
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