I have been a little concerned lately about the number of people who
are talking about a Pallidotomy, seemingly without the benefit of a
neurologist's recommendation. I think this is a step which should not be
taken lightly and the decision requires caution and thought on the part of
the PD person as well as an expert medical opinion (I know one cannot
seriouly contemplate it without one, thankfully). It is not appropriate for
everybody. It is NOT a cure for this dread disease - and that is really
hard to internalize until one has been through it. There are many symptoms
which it improves but there are risks and side effects from the surgery itself.
As you know my husband Stan had a Pallidotomy at Emory in February.
His dyskinesias on the right side have almost disappeared, but they are
still present on the left side and with his head. The off times are not
nearly as profound as they had been. He experiences 'off' times if his meds
are not taken on his regular schedule, but the course of the day is pretty
smooth if he gets rest, takes his meds on time, and is not under stress. If
any of the above happens, his symptoms can be pretty bad again. He has more
noticeable speech problems which a lot of people have reported following the
surgery. There is increased salivation and his voice is harder to
understand. He also seems to have some cognitive decline in some areas, but
we are hoping this is temporary. A recent CAT scan showed the lesion and
normal swelling around it. It takes months for it all to heal, so we really
won't know the final results for awhile. At 61, Stan is one of the older
people to have the surgery at Emory, and the results are said to be better
on younger patients.
I think he looks wonderful (the 'mask' has kind of disappeared) and his
gait and other movements are much more normal than I remember (two months is
a long time). Our life tends to be more predictable now, which is a perk
for both of us.
BTW, Terrie Whitling at Emory told me today that Aetna Insurance, the
Medicare carrier for GA and 8 other states, has agreed to pay for the
surgery again. They are now able to offer the surgery to their Medicare
patients on the waiting list. It took a lot of effort on many peoples part
to get this reversed and it happened!!! Thank you to all who were involved.
I hope other state Medicare carriers will follow suit.
Susan Hamburger, CG for Stan 61/15+ years
It's a funny thing about life; if you refuse to accept anything but the
best, you very often get it.
W. Somerset Maughm
