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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
----------------------------------------------------------------------
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2000, Week 2 April 2000, Week 1 March 2000, Week 5 March 2000, Week 4 March 2000, Week 3 March 2000, Week 2 March 2000, Week 1 February 2000, Week 5 February 2000, Week 4 February 2000, Week 3 February 2000, Week 2 February 2000, Week 1 January 2000, Week 5 January 2000, Week 4 January 2000, Week 3 January 2000, Week 2 January 2000, Week 1 December 1999, Week 5 December 1999, Week 4 December 1999, Week 3 December 1999, Week 2 December 1999, Week 1 November 1999, Week 5 November 1999, Week 4 November 1999, Week 3 November 1999, Week 2 November 1999, Week 1 October 1999, Week 5 October 1999, Week 4 October 1999, Week 3 October 1999, Week 2 October 1999, Week 1 September 1999, Week 5 September 1999, Week 4 September 1999, Week 3 September 1999, Week 2 September 1999, Week 1 August 1999, Week 5 August 1999, Week 4 August 1999, Week 3 August 1999, Week 2 August 1999, Week 1 July 1999, Week 5 July 1999, Week 4 July 1999, Week 3 July 1999, Week 2 July 1999, Week 1 June 1999, Week 5 June 1999, Week 4 June 1999, Week 3 June 1999, Week 2 June 1999, Week 1 May 1999, Week 5 May 1999, Week 4 May 1999, Week 3 May 1999, Week 2 May 1999, Week 1 April 1999, Week 5 April 1999, Week 4 April 1999, Week 3 April 1999, Week 2 April 1999, Week 1 March 1999, Week 5 March 1999, Week 4 March 1999, Week 3 March 1999, Week 2 March 1999, Week 1 February 1999, Week 4 February 1999, Week 3 February 1999, Week 2 February 1999, Week 1 January 1999, Week 5 January 1999, Week 4 January 1999, Week 3 January 1999, Week 2 January 1999, Week 1 December 1998, Week 5 December 1998, Week 4 December 1998, Week 3 December 1998, Week 2 December 1998, Week 1 November 1998, Week 5 November 1998, Week 4 November 1998, Week 3 November 1998, Week 2 November 1998, Week 1 October 1998, Week 5 October 1998, Week 4 October 1998, Week 3 October 1998, Week 2 October 1998, Week 1 September 1998, Week 5 September 1998, Week 4 September 1998, Week 3 September 1998, Week 2 September 1998, Week 1 August 1998, Week 5 August 1998, Week 4 August 1998, Week 3 August 1998, Week 2 August 1998, Week 1 July 1998, Week 5 July 1998, Week 4 July 1998, Week 3 July 1998, Week 2 July 1998, Week 1 June 1998, Week 5 June 1998, Week 4 June 1998, Week 3 June 1998, Week 2 June 1998, Week 1 May 1998, Week 5 May 1998, Week 4 May 1998, Week 3 May 1998, Week 2 May 1998, Week 1 April 1998, Week 5 April 1998, Week 4 April 1998, Week 3 April 1998, Week 2 April 1998, Week 1 March 1998, Week 5 March 1998, Week 4 March 1998, Week 3 March 1998, Week 2 March 1998, Week 1 February 1998, Week 5 February 1998, Week 4 February 1998, Week 3 February 1998, Week 2 February 1998, Week 1 January 1998, Week 5 January 1998, Week 4 January 1998, Week 3 January 1998, Week 2 January 1998, Week 1 December 1997, Week 5 December 1997, Week 4 December 1997, Week 3 December 1997, Week 2 December 1997, Week 1 November 1997, Week 5 November 1997, Week 4 November 1997, Week 3 November 1997, Week 2 November 1997, Week 1 October 1997, Week 5 October 1997, Week 4 October 1997, Week 3 October 1997, Week 2 October 1997, Week 1 September 1997, Week 5 September 1997, Week 4 September 1997, Week 3 September 1997, Week 2 September 1997, Week 1 August 1997, Week 5 August 1997, Week 4 August 1997, Week 3 August 1997, Week 2 August 1997, Week 1 July 1997, Week 5 July 1997, Week 4 July 1997, Week 3 July 1997, Week 2 July 1997, Week 1 June 1997, Week 5 June 1997, Week 4 June 1997, Week 3 June 1997, Week 2 June 1997, Week 1 May 1997, Week 5 May 1997, Week 4 May 1997, Week 3 May 1997, Week 2 May 1997, Week 1 April 1997, Week 5 April 1997, Week 4 April 1997, Week 3 April 1997, Week 2 April 1997, Week 1 March 1997, Week 5 March 1997, Week 4 March 1997, Week 3 March 1997, Week 2 March 1997, Week 1 February 1997, Week 5 February 1997, Week 4 February 1997, Week 3 February 1997, Week 2 February 1997, Week 1 January 1997, Week 5 January 1997, Week 4 January 1997, Week 3 January 1997, Week 2 January 1997, Week 1 December 1996, Week 5 December 1996, Week 4 December 1996, Week 3 December 1996, Week 2 December 1996, Week 1 November 1996, Week 5 November 1996, Week 4 November 1996, Week 3 November 1996, Week 2 November 1996, Week 1 October 1996, Week 5 October 1996, Week 4 October 1996, Week 3 October 1996, Week 2 October 1996, Week 1 September 1996, Week 5 September 1996, Week 4 September 1996, Week 3 September 1996, Week 2 September 1996, Week 1 August 1996, Week 5 August 1996, Week 4 August 1996, Week 3 August 1996, Week 2 August 1996, Week 1 July 1996, Week 5 July 1996, Week 4 July 1996, Week 3 July 1996, Week 2 July 1996, Week 1 June 1996, Week 5 June 1996, Week 4 June 1996, Week 3 June 1996, Week 2 June 1996, Week 1 May 1996, Week 5 May 1996, Week 4 May 1996, Week 3 May 1996, Week 2 May 1996, Week 1 April 1996, Week 5 April 1996, Week 4 April 1996, Week 3 April 1996, Week 2 April 1996, Week 1 March 1996, Week 5 March 1996, Week 4 March 1996, Week 3 March 1996, Week 2 March 1996, Week 1 February 1996, Week 5 February 1996, Week 4 February 1996, Week 3 February 1996, Week 2 February 1996, Week 1 January 1996, Week 5 January 1996, Week 4 January 1996, Week 3 January 1996, Week 2 January 1996, Week 1 December 1995, Week 5 December 1995, Week 4 December 1995, Week 3 December 1995, Week 2 December 1995, Week 1 November 1995, Week 5 November 1995, Week 4 November 1995, Week 3 November 1995, Week 2 November 1995, Week 1 October 1995, Week 5 October 1995, Week 4 October 1995, Week 3 October 1995, Week 2 October 1995, Week 1 September 1995, Week 5 September 1995, Week 4 September 1995, Week 3 September 1995, Week 2 September 1995, Week 1 August 1995, Week 5 August 1995, Week 4 August 1995, Week 3 August 1995, Week 2 August 1995, Week 1 July 1995, Week 5 July 1995, Week 4 July 1995, Week 3 July 1995, Week 2 July 1995, Week 1 June 1995, Week 5 June 1995, Week 4 June 1995, Week 3 June 1995, Week 2 June 1995, Week 1 May 1995, Week 5 May 1995, Week 4 May 1995, Week 3 May 1995, Week 2 May 1995, Week 1 April 1995, Week 5 April 1995, Week 4 April 1995, Week 3 April 1995, Week 2 April 1995, Week 1 March 1995, Week 5 March 1995, Week 4 March 1995, Week 3 March 1995, Week 2 March 1995, Week 1 February 1995, Week 4 February 1995, Week 3 February 1995, Week 2 February 1995, Week 1 January 1995, Week 5 January 1995, Week 4 January 1995, Week 3 January 1995, Week 2 January 1995, Week 1 December 1994, Week 5 December 1994, Week 4 December 1994, Week 3 December 1994, Week 2 December 1994, Week 1 November 1994, Week 5 November 1994, Week 4 November 1994, Week 3 November 1994, Week 2 November 1994, Week 1 October 1994, Week 5 October 1994, Week 4 October 1994, Week 3 October 1994, Week 2 October 1994, Week 1 September 1994, Week 5 September 1994, Week 4 September 1994, Week 3 September 1994, Week 2 September 1994, Week 1 August 1994, Week 5 August 1994, Week 4 August 1994, Week 3 August 1994, Week 2 August 1994, Week 1 July 1994, Week 5 July 1994, Week 4 July 1994, Week 3 July 1994, Week 2 July 1994, Week 1 June 1994, Week 5 June 1994, Week 4 June 1994, Week 3 June 1994, Week 2 June 1994, Week 1 May 1994, Week 5 May 1994, Week 4 May 1994, Week 3 May 1994, Week 2 May 1994, Week 1 April 1994, Week 5 April 1994, Week 4 April 1994, Week 3 April 1994, Week 2 April 1994, Week 1 March 1994, Week 5 March 1994, Week 4 March 1994, Week 3 March 1994, Week 2 March 1994, Week 1 February 1994, Week 4 February 1994, Week 3 February 1994, Week 2 February 1994, Week 1 February 1994 January 1994 December 1993 November 1993
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