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Terri You mentioned not opting for the dual control IPG - if I remember correctly it is because with a bilateral DBS the leads that go under scalp and neck and into the chest would have to be removed which is kind of a dicey procedure and they don't like to do that. I always wondered just how they maneuvered them down to my chest. Boy, have you been through the mill, girl. I am in awe of your courage and wish you the best. Ray Rayilyn Brown Board Member AZNPF Arizona Chapter National Parkinson's Foundation [log in to unmask] ----- Original Message ----- From: "Terrie Starr" <[log in to unmask]> To: <[log in to unmask]> Sent: Sunday, August 26, 2007 5:46 AM Subject: Re: DBS - your experiences > Les, > > Hi, I am a 52 year old female with PD for 25 years.? I have > everything?EXCEPT tremor.? I have included a copy of an email that I sent > another PD member explainig my history.? I thought it would be easier than > typing it all again.? The update on what you will read below is as > follows:? I have currently cut my Sinemet intake by 50%, my dyskinesia is > gone and the dystonia in my right hand is 75% gone.? I played golf > yesterday.? Before surgery I could only play every other hole and not > without taking Sinemet throughout the?course.Yesterday I played 9 holes > consecutively with no Sinemet.? Surgery did NOT impair my speech. > > ? > > In 1993 I had a left brain pallidotomy for the right side of my body.? A > very small lesion was burned in the globus pallidum.? At that time, I had > no significant PD symptoms on the left side of my body. Before the > pallidotomy I was severely impaired with bradykinesia, freezing, > micrographia (Interesting because I am left-handed.), balance, decreased > arm swing and dragging my right foot.? THe medication was causing constant > dyskinesia, which was worse than the PD symptoms, at least they were more > noticeable as well as painful. I became anorexic because the dyskinesia?? > prevented me from eating and when I did, I quickly burned off the > calories.? The pallidotomy was a dramatic success! For about 7 years, it > improved my symptoms, I could decrease my Sinemet and had virtually no > problem with dykinesia.? I functioned almost normally.? The one negative > thing caused by the? pallidotomy was that it caused an "on" dystonia in my > right hand.? It was only present when I took my meds. > > ? > > By 2000, many stressors and many years later, the pallidotomy was no > longer giving me the benefit that I desired to function"normally".The > medication induced dystonia in my right hand was worse, as were all??of my > previous symptoms.? Still, I did not feel that the left side of my body > was affected as badly as the right side.? The doctors and I elected to try > DBS on the same side that the pallidotomy was? performed on - the left > brain, right body. So, in Sept. 2000, I was? mapped again and had DBS > implanted - Medronics device.? Two months later, the wires connecting my > IPG broke. So I went back to have the hardware replaced.? AT that time Dr. > Vitek was not happy with his targeting and felt that better placement > could be found through further mapping. Remember that these were the early > days of DBS. I received minor benefits but nothing earthshattering.? My > husband noticed more improvement than I did.? Because of the placement of > the leads, we were never able to adjust my volta! > ge any higher than 1.1.? To do so would cause uncontrollable crying and > irratic motor response. > > Dr. Vitek wanted to remap and move the leads.? I was not interested at > that time.? I decided to leave well enough alone and wait for a time when > I felt that I could maximize my benefits through more advanced techniques. > > ? > > Now we are up to 2007 - PD symptoms were equally bad on left and right. > sides? Medication induced dyskinesia, dystonia, you name it I had it. I > felt it was time for intervention again -??? I? had??? become a grandma - > I was taking sinemet every 2 hours round the clock.? So, I went back to > Dr. Vitek because he had mapped my brain and knew my history better than > anyone else.? He also knows how unrealistically I expect my functional > level to be in spite of?? PD. > > ? > > Dr. VItek, Dr. Andre Machado and my husband and I formed a game plan.? The > plan involved multi-parts because I live in South Carolina, 12 hours from > Cleveland.June 25th I had the right brain(new side)?mapped and wired for > DBS.I did not have the IPG implanted at that time.I did, however, have the > lead pulled from the brain and the?wires disconnected from the IPG on? the > left side (original side). I returned home for 6 weeks. Aug 1, I returned > to Cleveland and had the left brain remapped and the lead dropped in a > more desirable?location. I was discharged from the hospital the next day > and spent 4 days in Cleveland sightseeing.??Aug 7th?I returned to the > hospital for what was supposed to be?outpatient surgery to implant 2 IPGs, > 1 on each side of my chest (they replaced the original one).? At that time > they attempted to remove the old wires and replace them with new ones. > There was a lot of scar tissue, too much to? safely remove without making > very large incisions.? They left s! > ome of original wires in and added new ones. > > ? > > As far as compatibility:? My husband explains it like this - 2000 Jeep > parts probably won't fit? 2007 Jeep. > > The devices used are Medtronics. > > Aug 8th, I was discharged from hospital and went to see programmer.? She > turned on and programmed ?both sides..? I am still at a very low voltage > for now - under 2 volts.? The original? side was turned on at a very low > voltage because of the swelling.? It can be adjusted later.? I will follow > up with a programmer,?Robert?Baumgardner, ?at Emory University in Atlanta > for fine tuning.? He will work with Dr. Vitek as needed.? Dr. Vitek is the > one that hired him. > > ? > > We discussed using the dual contolled IPG but I honestly can't remember > why it was decided not to.? My husband said it was due to battery life and > the fact that there was no option for bipolar on one and mono polar on the > other. > > ? > > If you are interested in knowing me better, google me as Terrie Whitling.? > There are still a few articles > > on the web from the 90's. > > ? > > John's timeline: > > June 25th - old side removed , new side installed > > Aug 1 - Old side installed with new leads for better placement > > Aug 7- old IPG wires removed 2 new PGs installed and new wires run > > > > Terrie Starr > > > ________________________________________________________________________ > Email and AIM finally together. You've gotta check out free AOL Mail! - > http://mail.aol.com > > ---------------------------------------------------------------------- > 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