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At 07:41 PM 10/22/01 -0500, you wrote: >Well Parkinsonians, it was almost a week ago that I put a DBS survey out >on the LIST. Am I perhaps to believe that not many survive the "ordeal", >because I received only one reply! I had more people who were >interested in the results, and I am sure they are as disappointed as I am >in the nonparticipation. Did I do something wrong? Did I ask the >wrong questions? Or are you all so happy with your "new life" that you >don't have time to sit down at the computer?! I'll try it again, if you >have had DBS surgery the Rockford Young Parkinson's Support Group would >like to know about your experience, whether it is negative or positive. >As I said before, you may reply either to the LIST or to me personally : >[log in to unmask] > >Sharon Habing, facilitator >Rockford Young Parkinson > >DBS survey > >Age: 52 > >Age at diagnosis: 43 > >Parkinson's symptoms/medications taken before DBS: >Eldepryl, Sinemet. Sinemet CR, Requip, Propanalol > >Other medical conditions for which you take medication/medication taken: Chrohn's disease >Previous surgical interventions - Pallidotomy, Thalamotomy, other: None > > >Date of DBS month/year: 11/22/99 > >Parkinson's symptoms/medication taken after DBS at >2 months; Sinemet 25/100 tabs 1 Q 3h, Sinemet CR 25/100 tab 1 bid >6 months: Sinemet 25/100 tab 1 Q 2h, Sinemet CR 25/100 tab 1 bid >1 year: Sinemet 25/100 tab 1 Q 2 h, Sinemet CR 25/100 tab 1 bid, Requip 3 mg tid >Today: >Sinemet 25/100 tab 1 Q 2 h, Sinemet CR 25/100 tab 1 bid, Requip 2 mg HS, >Sinemet CR 50/200 tab i HS >If it was yours to do over, would you undergo this procedure. Why or why >not? Please explain your feelings about this surgery as it pertains to >you and your particular situation Yes. The DBS surgery did not affect the on-off syndrome, but it does control the tremors in my head, neck, shoulders and hands. Immediately after surgery I was med free for several weeks. I was able to work for two more years. which I could not have done without the surgery. The only problems that I have had stem from adjustments made on the stimulators (2). The last adjustment I underwent in May of 2001 resulted in electric shocks occurring between my metal filling and my tongue whenever I touched the kitchen metal sink, and a high pitched whine in both ears that is continuous. I returned and the doctor reset the stimulators to the original settings, which stopped the electric shocks, but the whine/ringing in my ears is a 27/7/365 distraction. The research on the dbS shows sound science as it's basis. The first stimulator placement and hookup (incisions, wire placement, etc) is far superior to the second hookup done one month later. I swear that either a different doctor. resident of the appliance detail man did the work on the left side of my head. The wire is shorter and restricts my motion in my neck, etc. Despite this, and the experience of having my vision during the placement go upside down and switch from side to side until the surgeon figured out that the wire electrodes were hot when they were doing the placement, I am very satisfied with the overall results. >---------------------------------------------------------------------- >To sign-off Parkinsn send a message to: mailto:[log in to unmask] >In the body of the message put: signoff parkinsn EJB "Think for yourselves and let others enjoy the privilege to do so, too." ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn