At 08:25 PM 7/18/96 -0400, you wrote:
>I have had some requests to give an indepth account of the stereotactic
>procedure on the brain called pallidotomy. You can find all this in this
>listserve archives. I can't type and I can't master getting into archives -
>but John Cottingham is a master in this and will send you directions by
>E-mail or on this BB.
>Good luck.
'Salty' quotes from Barbara Yacos are available as a Current Topics message.
Who is Barbara Yacos?
I am a Registered Nurse - Midwife graduate of University of Virginia and
Frontier Nursing Service. I'm married to a lawyer and have two daughters
both on this list. I am a transplanted Canadian born in Nfld. but spent my
grade school days in Dalhousie NB and high school days (Lisgar) in Ottawa.
Parkinsons forced me to retire eight years ago. My claim to fame is a
pallidotomy I had in Stockholm last May by Dr. Lauri Latinen. The procedure
improved my quality of life.
Some of the quotes are:
Dear nbaker: I'm new on internet and have no idea what I am doing.
Some of her opinions are:
Dr. Iacono is a splendid neurosurgeon who happens to be very interested in
all phases of Parkinsons including medication. He practices at Loma Linda U
and is doing many many pallidotomies there.
What Causes Parkinson's...according to Barbara Yacos
>From time to time I find myself in a spirited discussion with a frustrated
physicist (my husband, a lawyer) regarding the cause of idiopatic parkinsons.
We have negated all the usual postulations as follows:
Herbicides: People had PD before herbicides existed.
Pestcides: Same.
Toxins from pulp and paper mills: Same.
Well water: People who live in cities don't drink well water.
Radon: Mostly in closed basements in granite rock areas.
So where does that leave us? NEUTRINOS. They are particles found
everywhere. They come from stars. They can penetrate anything - even a
piece of lead 90 million miles thick. Someone is born with a genetic glitch
and maybe Neutrinos love this particular glitch and move in and start their
dirty work - hence parkinsons syndrome.
Fix the genetic glitch - Cure PD.
What Does Barbara Yacos have to say to PD "fallers"?
Dear Lucille Wright: I had a pallidotomy last May 21 done by Dr. Lauri
Laitinen in Sweden, and to answer your question about what I mean by
improvement in my quality of life - one short sentence answers that. Since
the pallidotomy I stopped falling. No more bruises. No more fear of one
fall breaking a bone. For PD "fallers" this is a real plus. There are other
goodies for me but falling was the best benefit. Time will tell how long the
benefits last. I plan to keep everyone informed - good or bad - and will
message a short history one year post-op.
What was Barbara's description of her pallidotomy?
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
What did Barbara Yacos think about telling your kids about your PD?
Dear Alan: I have always suspected this and in fact when one of my daughters
(the scientic minded one) asked me several years ago whether PD is inherited
I said we didn't know and that it might be....
....
Last year I had a visitor, a student at Dartmouth who I knew. Jean
Truex, a son of Max Truex who was the first foetal implant done by Bob Iacono
in China. Jean watched the gradual deterioration of his father. He felt the
hope when his dad had the implant. He felt the joy seeing his father
improve. The saddness when Max died. Then he came to talk with me. He
hedged around a lot so I asked him if he wanted to talk about the inherited
gene worry. He did. We talked. Believe me just letting the kids talk out
their fears helps a lot. There are no round numbers we can quote. We can
tell them that the likelihood of getting PD is small and no sense mucking up
their youth worrying about something that small.
What is Barbara Yacos' favorite 'Movin' Music'?
I can relate to the guy marching through the hotel halls singing Onward
Christian Soldiers. My husband loves it when I keep moving in public places
by singing my favorite march -
March, march, march a-fif-a-derry,
Calling daddy to the door.
Daddy is the one
Who has the mostest fun,
And won't speak to mommy anymore.
(It works for me)
Barbara Yacos
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