Allan..... I had a pallidotomy performed by by Loma Linda University's Dr.
Robt. Iacono and Stanford University's Dr. Gary Heit, at Loma Linda Hospital
on 10/24/94. The unilateral surgery was very successful.... so much so, that
I'd have no hesitation to have the other side done when (not "if," but "when"
as the PD has recently begun on that side) it reaches the point that I
consider to be "unbarable."
The surgery itself, other than being something that was out of The Twilight
Zone (de de, de de, de de, de de <-------Theme from The Twilight Zone wafts
eerily around the room) when compared to "normal life," and what we have been
brought up to expect during our lifetime (which is CERTAINLY not to expect to
have one, or even two brain surgeries!), was 60 minutes in duration, was
ABSOLUTELY PAINLESS, and results were immediate, and appear to be permanant.
I might add that I had the surgery on a Monday, and by Tuesday I was back at
work, by my own choice (There was nothing good on TV, I didn't have anything
new to read, and I was bored silly....) <grin>
At the time of the surgery, I had fully involved PD on the right side of my
body. and barely perceptable "signs" of PD beginning on the left side. The
surgery cleared up about 95 percent of the symptoms on the right side, and all
symptoms on the left. I have experienced profound intermittant fatigue since
the surgery requiring an hour's nap at the time... aggravating, but ok when
one considers the alternatives. There are a few other "aggravating" internal
PD symptoms, i.e.,, constipation, sleeplessness, toe and leg cramping,
occasional weakness, and what has grown into a tremendeous dislike of "doing"
the roots of my wannabe-dark-auburn hair every 3 weeks! <giggle> I'm not sure
if that last may be attributed to Parkinson's...
The surgery was SO beneficial, that when physicians at Kaiser Permanente
prescribed the drug Tegratol for a pinched nerve due to an auto accident, that
despite my having what amounts to THE worst, most violently symptomatic
Parkinson's symptoms resulting from taking that "it-should-rot-in-hell
medication," Tegratol, the RIGHT side - the operated on side - remained
"normal." The LEFT side of my body went Parkie-to-the-max, taking about two
months to slowly return to near "normal." The left side - apparently "normal"
since the 10/24/94 surgery - is now, since the introduction of the Tegratol
(taken from July 6 to July 8, 1996)) has begun that slow, slow decline we all
recognize as that uninvited "guest," Parkinson's Disease. The side that got
the pallidotomy was not affected by the Tegratol (thank goodness!). Hence my
feeling that the results of the surgery will last indefinitely.
By the way... the "Tegratol experience" has tought me a sad, but most valuable
lesson. I don't care HOW important, how learned, or how well-intentioned a
neurologist may be, if I need to see one for the PD, or am prescribed ANY
drugs, for ANY reason, by ANY physician, unless I'm totally unconscious and
unable to speak I ain't taking NOTHIN' till I speak to a MOVEMENT DISORDER
SPECIALIST .... FIRST!! And that would be someone of the stature of Dr.
Iacono or Dr. Heit.
I've come to realize that few neurologists, and even fewer OTHER types of MD
have anywhere near the knowledge OR experience that a movement disorders
specialist might have about Parkinson's and the drugs and/or surgeries related
to this steeeeeeenkin' disease. In fact, I seriously doubt that most MDs are
as Parkinson's-educated as of our many PD List members!
Errrrrr.... it seems that I've had this "Tegratol 'thing" bottled up inside
for a few months, and it just burst out of me, unbidden, tonite. I'm angry at
the physicians at Kaiser.... because my MD (an internist) DID consult with a
neurologist there, since he WAS not terribly 'up" on the latest Parkinson's
information. I respect his consulting, but KNOW that a movement disorder
specialist would have never have prescribed that God-forsaken drug for a
Parkie.
Anyway,, folks... and Allan... sorry for the temper tantrum (tho it felt great
to get it out). And generally, I think very highly of the treatment I've
received by Kaiser. It's heads and shoulders above any other HMO I've
belonged to in the past. (SHUDDUP ALREADY, BARBIE! Sheeeesh.... save THAT
topic for another time) <grinning>
Barb Mallut
[log in to unmask]
----------
From: PARKINSN: Parkinson's Disease - Information Exchange Network on behalf
of Allan Schumann
Sent: Friday, October 11, 1996 8:50 AM
To: Multiple recipients of list PARKINSN
Subject: Re: effects of the Pallidotomy,if any. If anyone out there has
had a Pallidotomy
IT SEEMS LIKE THERE ARE NOT VERY OF YOU WHO HAVE HAD A PALLIDOTOMY. THERE
HAVE ONLY BEEN TWO COMMENTS . PLEASE LET ME HEAR FROM YOU.
ALLAN
