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Thank you to those who responded to my support group's DBS survey. To those of the "list" who were interested in the findings - our small sampling can hardly be called representative of anything. Although it is interesting to note the survey echoes the results of a Medtronic study (per the Medtronic story Paul sent out on 1/15). Almost all my responders "experienced one or more adverse events" and "individual results varied considerably" not unlike the disease itself. Here are, from our survey, some points to ponder - - all those who responded either to our survey or to the email of others were all young on-set - longest span of time between date of DBS and the present is 5 years - reports that tremors are returning - elimination of tremor is most often seen - does not work as well for those who experience freezing and "on-off" - patience and time needed for adjusting the stimulator settings and medication levels - medication reduction was varied - some are only on an agonist, others are still on Sinemet but the dosage is reduced - placement of the halo seems to be the worst part of the surgery - for those considering the procedure, have it done at a major center that uses micro-electrode mapping (from Ernie) - regardless of the number of adverse events/side effects ALL would do it again Sharon Rockford Young Parkinson's Support Group ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn