Dear Lucile Wright: I thought I had answered your questions about my
pallidotomy - on Prodigy (which I quit last month so I can't check). My
typing is slow and ponderous (and did not improve after pallidotomy) so I
will just give you a synopsis - also call the American Parkinson's Disease
Association and ask for articles they have on file re pallidotomy.
(1-800-223-27323).
My symptoms started in l986 with a pill rolling type of tremor in my left
hand, and a slowing down generally. My problems increased and when I saw Dr.
Lauri Laitinen in Stockholm last year I had akinesia, rigidity, resting
tremor, poor gait and impaired balance. My left arm and leg were more
affected than the right side. I found it very difficult to turn in bed and
getting up from bed. As well, getting up from a chair was difficult. I was
afraid to take antiparkinson drugs as a trial period in l988 I got
hallucinations from a very small dose. I did take Eldepryl 5 mg/day for
three years and it did ease the stiffness somewhat.
Because of a relatively rapid motor deterioration last year I contacted
Dr. Lauri Laitinen in Stockholm for consideration of a right posteroventral
pallidotomy. He felt as I did that early surgery sometimes even without
L-dopa therapy would work well. So far I think I am the only one although
Dr. Laitinen is ready to propose early surgery.
A stereotactic CT scan and blood work was done on May l9, 1993.
I was admitted to hospital on May 20, l993 and Dr. Laitinen tested me
for memory, concentration and verbal deterioration which were normal. Hand
performance was very poor and gait and balance were off.
If I had been on medication it would have been stopped 24 hours before
surgery which can be very difficult for patients dependent on Sinemet, but
doctors know this and I believe give a sedative - I stopped Deprenyl weeks
before although I didn't need to. I was given a tranquilizer the night
before operation.
A right posteroventral pallidotomy was done on May 21, l993 under local
anaesthesia. Laitinen's Steroadapter and Steroguide were mounted on my head
- when CT coordinates of the pallidal target had ben transferred to the
Stereoguide, the Stereoadapter was removed. A frontal burr hole was made and
a l.8 mm thick electrode was introduced and Dr. Laitinen asked me questions
about various sensations, visual and otherwise to make sure of the position
of the electrode. When he was sure of the position a thermolesion was made.
I got immediate results - stiffness was gone and movements were normal on
the left side.
The total time was 55 minutes - totally awake and comfortable.
I was discharged the next morning feeling wonderful.
Total price $12,500 of which BC/BS paid $4,600. If done in the states
BC/BS would have covered more.
The great feeling lasted about seven months and then my right side
started to act up. I expected this and Dr. Laitinen had told me to take
Sinemet CR 25/100 which I started February l994 with no untoward effects so
far. I am now thinking about a pallidotomy on the other side. Dr. Laitinen
wouldn't do a bilateral at the time of my pallidotomy as he felt it was
safer to do the second side later - six months or more. Some doctors here
are doing bilaterals with success - some say there is too great a chance of
losing one's voice or thinking ability when both sides are done at once. Who
knows for sure yet - it is too soon to tell, and besides the technique is
being constantly improved. Scotoma (blind spot) used to be a 5% problem and
since last year no reports of scotoma.
My "quality of life" is much better than it was last year - even to the
day when I started on Sinemet. I used to fall - I haven't fallen once since
the operation. My husband was thinking he would have to retire and stay home
with me - I am still coping alone. I walk 2-3 miles at a time without
falling or weaving around like a drunk - I do feel better carrying a cane
though. The left sided tremor is gone.
Things are not perfect. I obviously have PD. I still have a facial
grimace - still drag my left foot. Still have insomnia and constipation.
BUT I feel better and don't feel imprisoned like in a tight wet suit. For me
that is quality of life.
From what I see, conventional patients (taking PD drugs) experience less
of the on/off syndrome and less dyskinesia after pallidotomy. Maybe a case
such as mine will show that early pallidotomy (before drugs) will prevent bad
side effects. Wouldn't that be a breakthrough? We need a breakthrough just
about now.
Regards,
Barbara Yacos
Barbyac
