In answer to your questions, Margaret, and for others who might be
interested: The University of Kansas Medical Center in Kansas City, Kansas,
was the first of 5 medical centers in the U.S. to be granted approval by the
FDA to conduct 5 experimental pallidal stimulations. (Order article # 081
from [log in to unmask] for further info). Dr. William Koller of KU Med was the
coordinating neurologist, and Dr. Steven Wilkinson was the neuro-surgeon.
After each 5 surgeries, the results are evaluated, and KU can then apply for
FDA permission to conduct another 5. I believe they just completed the 4th
of the second round of 5 yesterday. I believe that one other medical center
is now getting started with the program - in Minnesota, perhaps, although I
don't remember for sure.
The surgeries take about 5 hours, usually. That includes the time the
patient is awake on the table while the electrodes are being placed, and then
the time under general anesthesia while the wires leading from the electrodes
to the chest are internalized (placed under the skin) and the stimulator is
implanted. When there are no complications, the patient goes home the next
day. Dick was able to go to the grocery store the day after, where we ran
into people who knew he had just had brain surgery and were astounded that he
was up and walking around. He then had a two-week follow-up with the
neurosurgeon, and then 3- and 6-month testing for the purposes of the study.
It's amazing, but recovering from brain surgery is nothing at all like
recovering from abdominal surgery, for example.
The criteria for selecting patients, as I understand it, are: Must no
longer be getting good benefit from sinemet and/or other Parkinson's meds,
must be in good general health, and must be mentally competent to respond
reliably to questions about sensations, visual effects, etc., while awake on
the operating table. The neurosurgeon and neurophysiologists (the
"brain-mappers") rely on very sophisticated equipment to help locate exactly
the right placement in the globus pallidus, but also rely on sensations and
visual effects the patient is experiencing, and must be able to trust what
the patient tells them.
Dick does continue to take PD meds, although he is taking slightly less
than before.
One thing the surgery does, or aims to do, is control the nasty side effects
of sinemet, such as dyskinesia and dystonia, so that if necessary, a patient
who had a lot of trouble with side effects could actually increase his
dosage. (Dick is out mowing the lawn, and I can't remember his current
dosages exactly - I do know the amount he takes of sinemet is really minimal
compared to what a lot of people take). I would say again that this surgery
is not a cure, but has done a great deal to restore Dick's quality of life.
It is also reversible if something better should come along in the future -
that was our reason for
choosing this over pallidotomy. Feel free to write with any further
questions. Dick and Margie Swindler
[log in to unmask]
Just realized I hadn't completely responded to your question about North
Shore Med Center. Dr. David Eidelberg of North Shore is working with KU Med
Center (and also, I think, with Columbia Presbyterian in NY, perhaps) to
coordinate the testing. I understood that the Italian doctors conduct
research both at Columbia Presbyterian and in Italy.
