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Don's the one with Parkinson's.
I'm the one with memory loss.
The "three-page report" was three pages long, but most of it not
about the downside of pallidotomy.
Here are the pertinent passages.
 
"I have been afflicted [deliberate choice of that word] with Parkinson's
for 20 years, and the past few years have been marked by severe problems--e.g.,
severe tremor, not controlled by doses of Sinemet as high as 2,800 mg. (other
drugs were either not tolerated or ineffective); extreme depression and emerging
 emotional problems;
significant sleep problems [we hadn't had a full night's sleep in years];
and general deteriorating health and well-being.
In a careful review of the current available treatments,
I found the only one without serious side effects to be the VIN
[stimulation of the ventral intermediate nucleus of the thalamus] surgery.
Tremor in PD [Don's major physical symptom] is now hypothesized to be the result
 of
increased `hyperpolarization of thalmocortical neurons' (increased
gain in circuit); that is, `excessive subthalamic drive' is
the major cause of tremor.
 
Lesions created by thalamotimies and pallidotomies reduce
the flow of neurons through the thalmacortical circuits,
reducing tremor (for a time).
These procedures have resulted in serious injury to the optical
and/or vocal systems 14 to 20 percent of the time.
Bilateral lesions cause a significantly higher rate of speech
and visual impairment than unilateral lesions [Don
needed bilateral surgery].
Mortality rates as high as 8 percent are associated with bilateral lesions.
Improved methodology using stereotactic radio frequency ablation has
reduced the mortality rate, but the procedure still results in a serious rate
(8 to 12 percent) of damage to the optical and/or vocal systems.
In addition, symptoms seem to recur within 3 to 5 years.
Finally, the procedure is in no way reversible.
 
The data for the chronic stimulation procedure indicates a 90 percent
chance of total control of the tremor, virtually a zero rate
of serious side effects, and no indication of symptom recurrence
after an observed period of about eight years.
To quote _The Lancet_ (337 [Feb. 16, 1991]: 405),
`The reversibility and adaptability of chronic Vim [sic] stimulation
should make this procedure preferable to traditional thalamotomy
in the treatment of parkinsonian and essential tremors,
especially when bilateral surgery is necessary.'"
[The other important journal article on this is _J Neurol Neurosurg
Psychiatry_ 56 (1993):268-73.]
 
We chose to go to Grenoble last June (1994) for the VIN surgery
because Don felt he couldn't wait for the FDA to approve it here.
Also, he preferred being treated by the doctor who had developed
the procedure rather than by someone learning the technique.
Then, too, the first surgeries here were to be unilateral only; that
was not satisfactory.
 
Results were dramatic and continue to be.
Slight tremor has returned to Don's left leg.
He could be "retuned" to eliminate that tremor, but his speech
would probably slur, so he lives with that tremor.
Other tremors and facial grimacing have stopped.
We sleep the nights through.
We went backpacking a month after he got out of the hospital.
He's reduced his meds about 80 percent and gained about 20 lbs., so
he's back to his college weight.
 
Although this has been a godsend for us,
the procedure is not recommended for everyone.
It has very little effect on symptoms other than tremor.
It is arduous; both patient and caregiver have to be emotionally
and psychologically strong, and the patient needs to be reasonably
physically fit (except for Parkinson's, of course).
 
Until the FDA approves the procedure, it's unlikely to be covered
by your health insurance.
We had to borrow our way to this.
Medtronic, the US manufacturers of the equipment, is working
with several centers in the US to bring VIN here; we stopped
following their progress after we decided to go to France.
 
I hope this helps.
$orry there isn't more about downside on the pallidotomy,
but after Don read the mortality figures and the high (to him,
who loves to read) possibilty of damage to visual acuity,
he opted for the VIN.
Had that not been an option, we probably would have chanced the pallidotomy.
 
Feel free to write with questions I haven't answered here.
 
Joanne Sandstrom
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