Barb Yacos (responding):

I'm doing fine with the unilateral pallidotomy, so far... Been 19 months since
the surgery and if and when the other side needs doing, it'll get done with no
trepidation.... errrrrrr..... providing Medicare will cover it then.  I know
they've stopped or have become very selective about pall. coverage claiming it
to be "experimental."   Experimental?  They're performing it all over the
place now!  GIMME A BREAK!

The high dose of Motrin has helped the pinched nerve alot and I feel human
again (thank goodness!).  It was like going thru 2 weeks of unremitting labor
pain!!!

Unfortunately,  having been initially prescribed Tegretol for the condition by
the MDs at Kaiser, which set off the PD to such an extent as I've not had in
the entire 20 years of living with the disease, I've been forced to up the
Sinemet dosage considerably.  Am now bringing the dosage down a bit each day,
and the symptoms are slowly lessening day by day.  WHEW!!  Creepy experience!!
And needless to say, I'm hoping and praying that the PD symptoms on the
unoperated side fully subside now that the egretol is in the trashcan.

Realistically, I suspect that now that the "devil" has been freed, it'll not
want to go back to it's original state of non-existance, so i'll prolly find
it slowly ireasing, as is the nature of this beast we live with.

NOTE:  The side which had the pallidotomy was FINE throughout the whole
otherwise negative experience!  But the heretofor uninvolved side went Parkie
on me from the Tegretol.

Like you, Barb, my prefernce is for the shorter brain mapping/surgical
experience, and I was back in my room scarfing down a big (but typically
hospital-tasting) <YECH!> dinner within an hour of the start of the surgery.

Let us know how your second pall. goes and of COURSE, m'dear, please know I'll
be rootin' for ya the whole way!  YOU GO, GIRL!!!!!!!!

Barb Mallut,
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----------
From:   PARKINSN: Parkinson's Disease - Information Exchange Network on behalf
of [log in to unmask]
Sent:   Wednesday, July 17, 1996 2:42 AM
To:     Multiple recipients of list PARKINSN
Subject:        Pain and suffering

Some questions arise when I hear that a patient is too old or too far gone to
take a chance with pallidotomy.  It seems to me if a patient has tried all
the meds and none are working and the patient is miserable, and knows about
possible problems with pallidotomy and wants one, she should have one.  It
might just work - not to make her perfect (pallidotomy doesn't do that) but
to make life a little easier for her.  Makes one wonder!!!    Cancer patients
can have other serious problems but if there is a chance that an operation
will help......it is done.

BTW I had a successful unilateral pallidotomy done by Dr. Lauri Laitinen in
Stockholm in May l993, and will be getting the other side done this fall.
 That should balance things up a bit for awhile.  Dr. Laitinen doesn't do the
long brain mapping procedure (up to eight hours in some institutions).  I was
back in my room with breakfast waiting in 55 minutes and that suits my
claustrophobic nature just fine.

Barb Mallut:  How are you doing on that big dose of Motrin for your rib pain?
 Are you ok otherwise?  Are you satisfied with your unilateral pallidotomy
and do you plan to get the other side done?

Simon Coles:  Did you ask your father for the particulars re the PD village
being built near Manchester UK?

Dr. Cheryl Waters:  Would you consider writing a message here in regards
patients with Parkinsons and Restless Legs Syndrome?  I know you are having
success in treating this combination.  The neurologists writing articles for
the RLS Foundation, Inc., "NightWalkers" newsletter, have figured out
treatment for RLS but not including PD.  Opiates figure in their treatments
for RLS but recently we have been hearing bad things about opiates used by
patients with PD.  Comment please.

Regards,
Barbara Yacos, RN
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