To: INTERNET:[log in to unmask]
Alan Bonander shared information and in that spirit, perhaps some
of you may be helped by my story (in 2 parts).
I have seen requests in the lists for information from those who
have had fetal tissue implant ("transplant" or "graft") surgery.
I had implant surgery at the Neuroscience Institute at Good
Samaritan Hospital in Los Angeles in early October, 1995 and
would be happy to relay to the readers my background and
experience with this experimental surgery.
First my background: At the time of the surgery I was 57 with
the official diagnosis made 7 years earlier when I was 50. My
neurologist knew from observation I had PD when I first visited
her two years earlier; I kept in touch and returned when I began
to feel I needed something more than exercise. Then stroke was
ruled out via a scan and I was diagnosed with idiopathic PD
(unilateral/left side). My first visit after diagnosis left many
memories, especially "treatment will be with drug therapy. If
you are looking for a surgical solution, there is nothing for you
YET".
In about 1969-70 I had ankle pain on the left side, and after
orthopedic evaluation it was suggested that I visit a UCLA brain
clinic; but age and familial responsibilities caused me to avoid
visiting UCLA. That pain continued on and off for many years.
During the 1960's I had cortisone shots in my wrist joints if I
was playing golf or tennis, for tendinitis I was told.
I was born and raised in the Mon Valley in SW PA, the site of the
1948 "killer smog" and many steel factories. I never lived on a
farm and as far as I know no, no one in my family had PD although
my paternal grandmother probably had essential tremor. I spent
my entire career in the computer business. I have been a ham
radio operator for more than 30 years (since active duty in the
US Army stationed in close proximity to computer equipment.)
Upon diagnosis, I began an exercise program for PD patients.
Medication was limited to Amantadine and Artane. In 1988
testicular edema (right side) struck and stopping the Amantadine
stopped the edema within 8 hours. I then began a course of
Sinemet, Artane and Eldypryl, with titrations increasing to 8X
25/100 Sinemet, 4X 3mg Artane and 2X Eldypryl daily. Experiments
with Sinemet CR failed.
In 1992 I went to the ER with severe pain in an area below my
navel. Self-diagnosis was likely a tumor on an undescended
testicle (left side). A large seminoma was surgically removed
followed by 15 "hockey stick" rad treatments. So far examination
and tumor markers are fine and cancer is not an issue (see later
discussion regarding immunosuppression after implant). Reading
about PD taught me to be alert to hospital treatment not PD
related. Neurologist kept on top of things and my family took
responsibility for PD meds and schedule.
In the intervening years PD progressed and I reached a point when
Neurologist noted (in mid-1994) I was at a point where reactions
to Sinemet were becoming a more serious problem and suggested I
look into an implant as I was a good candidate for a research
project which, based on a few salient facts recently reported in
the journals should help me. My general health was good, I
exercise (I am not afraid of risk, hospitals do not frighten me
and wife is a medical professional.)
I asked my neurologist why an implant and not a pallidotomy or
thalamotomy. Answer: If the implant would not work, I would
still be able to have an implant but a pallidotomy or thalamotomy
first would close any chance for an implant. The implant does
not change the virgin nature of the brain.
