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From:   Parkinson's Information Exchange on behalf of Larry and Mary Alice
Stilwell
Sent:   Thursday, December 25, 1997 3:01 PM
To:     Multiple recipients of list PARKINSN
Subject:        paladotomy

My father has been diagnosed with Parkinson's for about 16 years.  He has
recently been looking into the Paladotomy procedure.  I have done research
on my own and his doctor has even recommended this to us.  Dad's illness has
not quite progressed enough to require this, but when the time comes, we
want to be fully informed as to make a good decision.
  If there is anyone who has had this procedure and it has been over six
months, would you answer a few of our questions please?

I've had PD for 22 years and am 55 years old.  I had a unilateral (right side
only) pallidotomy performed on Oct. 24, 1994, and am forever grateful to have
had this option.  Had outstanding results as far as return of movement on my
right side which has remain to this day unchanged since the surgery.  I'm
naturally left-handed, for whatever that's worth.

What were your symptoms before the procedure? What are they like now?

Extreme rigidity, dyskenesia , right side loss of movement in hand, arm, leg,
foot.  Balance problems (but I've always been kinda klutzy!) <grin>, inner
tremor (there, but not visible), toe and leg cramping, loss of sleep,
difficulty turning when recumbent, freezing while walking.  and more.  "Hint"
of a few PD symptoms on left (primary side) a few months prior to surgery.

Has the procedure benefitted you? in what ways?  Has it had any drawbacks?

Emphatic YES!!   I've had at least a 95% return of right side motion and all
left-side symptoms disappeared when I had the surgery till I was given the
drug Tegratol for an auto-accident-caused pinched nerve in 7/96, which
triggered off the left-side symptoms again.   There've been no drawbacks as
far as MY experience having a unilateral pallidotomy.... and I can ONLY speak
of myself.

Are you regressing again at a quicker rate, maintaining a new level, or
worse than before?

I have no visible regression on my right side, however, I know the disease is
still there - the surgery is NOT A CURE - and there are still other parts of
my body where the disease continues to degenerate, albeit rather slowly.  I
can't compare "before" to "now" because I have VERY different problems and
symptoms now than I had prior to the surgery, i.e., prior was all
"movement-related," and now there's visual, speech, breathing, swallowing,
awful fatigue - internal symptoms, mainly.

Would you recommend this procedure?

Yes.... with the understanding that each PWP has a unique set of symptoms, and
the disease acts differently within each of us.  What works for one may not
work for another.  AND with the understanding that the surgery brings relief,
but is NOT a cure.

Where and what doctor performed the surgery?

My pallidotomy was performed at Loma Linda University Medical Center, BY
Stanford University Med. Center's Dr. Gray Heit (my hero!), and assisted by
Loma Linda's famed and somewhat notorious (AND outstanding) Dr. Robert Iacono.
 Dr. Heit had was a Fellow at Loma Linda learning pallidotomy and mine was his
last (40th) surgery before his return to Stanford.  NOTE:  Dr. Iacono has
since gone into private practice tho is still on staff at Loma Linda Hospital.

Would you do it all over again knowing what you know now?

ABSOLUTELY!!!    And if.... when... I ever get discouraged or frustrated by
how I feel NOW, all I need to do is to remind myself how utterly miserable I
felt BEFORE the pallidotomy.

Thank you for your time and answers!!
Jennifer Stilwell
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