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?
>?
>?
> ________________________________________________________________________?
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>?
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