 |
 |
Ray, I don't know what's up with all the question marks.? I must have a poltergeist in my computer.? The doctors, actually, opted against the Kinetra.? Having separate IGs allows for more options in programability.? After having 5 different brain surgeries, I think I'm about as bionic as I can get.? I did have the IPG and wires and leads removed from? previous DBS done in 2000.? That was a particularly grueling procedure that took 5 hours instead of the anticipated 2.? There was so much scar tissure built up that they ended up leaving the old wires in place and just added new ones.? I must admit that although I have been fearless up until now, I do know my limits and I'm now officially retired from brain surgery.? At 52, I'm finally being to feel my own mortality. You know, I demand an unrealistic expectation of my functional level, in an attempt to live my life on my terms - with as normal a functional level as possible.? John and I have 5 children and one grandchild and I refus! ed to have them remember me as handicapped.? This attitude has kept me from going nuts after 25 years of PD. My children were 4 and 7 when I developed PD.? We never made PD a major issue in our lives because I didn't want them to grow up with the memory of PD being a major presence in my life or theirs, rather that it was just a part of an ordinary life.? I hope all this makes sense to you. My 22 month old grandson has learned how to notice when I need help getting out of the recliner and will casually walk over and offer his arm in an attempt to help me up. Terrie From: rayilynlee <[log in to unmask]> To: [log in to unmask] Sent: Mon, 27 Aug 2007 11:50 pm Subject: Re: DBS - dual control IPG 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? ________________________________________________________________________ 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