/cat:L/pri:R/sld:K/por:3/for:5/slu:BC-PARKINSONS:DE_HEALTH  lifestyle knigb

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<B>BC-PARKINSONS:DE - health, lifestyle<P>
<B>For many with Parkinson's disease, grueling brain surgery offers hope<P>
(PHOTO) (HAS TRIM)
By Patricia Anstett
Knight-Ridder Newspapers
(KRT)
DETROIT - Jim Bence has spent countless hours wondering: Was the arduous
brain operation he underwent really worth it?
Bence, a 46-year-old Fenton, Mich., man with two young sons, still has
doubts three months after the surgery, particularly if he concentrates on
what he still can't do because of Parkinson's disease.
He can't return to his sound system business, play softball or dress
himself quickly. He still can't be counted on to drive his son to soccer
practice.
He and his wife, Ethel, had hoped for more, he acknowledges. In that way,
his feelings are no different than those of countless others who undergo
medical treatments that produce gains, but not cures or even dramatic
improvements.
"No matter how realistic you are, you still can't help but hope for a
miracle," Bence says.
Bence knows that he is better because of the surgery. His body doesn't
thrash about the way the way it used to. His right hand doesn't shake as
long. His days are more predictable.
"It took me a while to appreciate the benefits, but I now see that there
definitely have been some," Bence says.
Two years ago, after national TV programs aired astonishing footage of
patients with Parkinson's disease who once used wheelchairs walking out of
operating rooms after brain surgery, people around the country clamored for
information about pallidotomy, a nearly 60-year-old operation improved with
new brain-mapping techniques.
Now, a more realistic picture of the surgery's benefits and shortcomings is
emerging, as patients like Bence tell their stories and specialists
reported this month at two medical meetings on the nation's first carefully
recorded studies.
Clearly, improvements can be dramatic. But more typically, symptoms are
lessened but not eliminated - usually enough to make the emotionally
stressful and possibly risky procedure worthwhile, Bence and other patients
say.
Sometimes, gains disappear in two years, or symptoms worsen after surgery.
In rare cases, patients have been blinded or paralyzed.
"I really can't tell the results; I think they're mixed," says Joseph
Grano, a 53-year-old Wayne State University law professor who had the
surgery last August.
The right side of his body is a little stronger, he says, but his voice,
slowed and made faint by Parkinson's disease, got so much weaker after the
surgery that he may have to give up teaching. He's now on a disability
leave.
But palliodotomy "has given me another life," says Robert Perry, 57, a
disabled plant manager for General Motors' truck and bus plant in Pontiac,
Mich.
Perry's voice is stronger and he has fewer of the spasms that he suffered
for as much as 10 hours a day. He's driving again and can do most
activities, though he still has to pace himself. Perry considers the
effects of surgery so significant that friends now help him celebrate two
birthdays each year.
One marks his actual day of birth; the other celebrates the day of his
operation.
Perry, Grano and Bence all underwent pallidotomy at a program at Detroit's
Henry Ford and Sinai hospitals. It uses a technique called micro-electrode
recording.
"Virtually everyone" has improvements in at least one or more symptoms,
says Dr. Peter LeWitt, Bence's doctor and a Sinai neurologist.
Pallidotomy mostly improves frozen, slowed and rigid movements, not tremors
and speech problems, adds Dr. Fred Junn, a Ford neurosurgeon.
"In the last year, we've realized the limitations of pallidotomy more than
ever before," Junn says. "But it can be a useful treatment."
"What hasn't panned out" is surgery to improve problems with walking, one
of the most common Parkinson symptoms, Junn says.
Doctors stress the need to carefully select patients for surgery. As many
as 25 percent of patients "are incorrectly diagnosed" as being likely to
benefit from it, says Dr. Roy Bakay, a neurosurgeon at Atlanta's Emory
University School of Medicine. He summarized the success rates of Emory's
program, one of the nation's biggest, at a recent meeting in Denver of the
American Association of Neurological Surgeons:
Patients who do best with the surgery are ones who show some improvement
prior to surgery with the medicine levodopa, the generic name of Sinemet,
the most commonly used Parkinson's drug.
It also appears most beneficial in younger people or ones whose symptoms
mostly occur on one side.
There's also some evidence that the surgery may improve memory, according
to Dawn Bowers, a University of Florida researcher who presented a study at
a recent American Academy of Neurology meeting in Boston.
But other studies have not found this improvement, she says, and more study
is needed to determine if the surgery brings subtler gains in memory.
The procedure itself is highly complex and technical.
Patients are only lightly sedated for the procedure so they can tell
doctors if they feel any unusual sensation.
The surgery itself, which takes four to eight hours, involves threading a
thin electrical tool into the brain to burn away a sliver of hyperactive
nerve cells that may cause Parkinson's symptoms.
The tip of the electrode is so small it is barely visible, "as thin as a
piece of hair," Junn says. But it fits into a tool that looks remarkably
like a household drill - a high-tech Black & Decker tool for the brain.
Typically, the operation is done on one side of the brain, to minimize
complications. But that means patients usually only can achieve
improvements on one side of the body at a time.
"It's hard to give functional improvement" from surgery on one side, Junn says.
He awaits federal approval of a new battery-powered device that is
implanted in the brain. It would give doctors another option to performing
pallidotomy on the other side of the brain.
Another technique called micro-electrode recording used at Emory, Ford and
some other centers improves the ability to pinpoint where to place the
electrical probes, some doctors believe. It records the sound of nerve
cells as they fire, to help doctors know if they've touched the right area
of hyperactive brain activity.
The surgery costs about $15,000 to $18,000; insurance usually covers the
procedure.
Many centers have not purchased the microelectrode recording equipment,
Emory's Bakay says, because it costs more than $120,000 and requires a
physicist to operate it.
As much as 80 to 90 percent of the time, the globus pallidus, the region
where neurosurgeons operate, is exactly where it should be, Bakay says. But
even a few fractions of an inch can make a difference between success and
failure.
Yet even with the equipment, doctors may need to insert the electrode three
or more times. That's because no one's anatomy is exactly standard.
(EDITORS: STORY CAN END HERE)
Prior to surgery, doctors bolt a metal frame into a person's skull,
inserting long screws at four separate points and two rods into each ear.
Bence had to have that done five times because the device kept shifting.
Then technicians had a hard time locking him into into a magnetic resonance
imaging (MRI) machine, used to get X-ray like pictures of the brain's
interior. Bence was clamped into the confining MRI machine five times.
In the operation itself, Junn made five separate 3/4-inch incisions into
the top right of Bence's forehead before equipment indicated he had found
the precise area of hyperactive cells.
When he found the correct spot, the tiny electrical probe Junn held made a
sound like radio static. "These are abnormally reactive neurons," Junn told
Bence. "They are constantly firing."
He told Bence "if something is bothering you, we want you to yell out. ...
We'll stop it the minute you feel it."
At one point Bence said, "I just had my first weird feeling, Doc. Like a
9-volt shot of electrical current." He said he felt the current in his jaw
and face - "it made my lip twitch - but added, "I can handle it. It's like
a root canal."
Near the end of the 10-hour ordeal, Bence was awake but tense and
worried-looking. He joked less with Jeanne Draggoo, an experienced nurse
who calmed Bence with small talk and attention.
To make sure the procedure hasn't sliced a person's optic nerve, causing
blindness, doctors shine a flashlight and ask patients to report precisely
where they see the light. "Just being off an eighth to a quarter of an inch
can make a difference between successful surgery and blindness," Junn says.
He also asked Bence to wiggle his toes and puff out breath to make sure he
didn't disrupt any signals the brain sends to the rest of the body.
"We're finished," Junn told him.
Bence, who held a picture of his two sons in his lap throughout the
procedure, reacted in disbelief. Then he cries. "You tell my father-in-law
I didn't chicken out."
A nagging cold slowed Bence's recovery. "I've yet to notice the differences
I'm looking for," he said a month after his surgery.
His wife, Ethel, a childhood sweetheart, admitted she "went into a
depression" when she didn't see better results. "I expected more," she
said. She had hoped Bence might improve enough to help her on a more
reliable basis with their two boys, 9 and 3.
Two months later, Bence still is struggling. He is president of the
Flint-area Parkinson's support group of the Michigan Parkinson's
Foundation. The group was eager to see him in March to see how he fared.
But this wasn't a good day for Bence. Coming down the hall, late for the
meeting, Bence drops papers and slows to a halt. He confides that it took
him nearly 1 1/2 hours to dress, and he didn't feel comfortable driving so
he had to ask his father-in-law for a ride. "I just got up on the wrong
side of the bed, as we say in the world of Parkinson's," he says.
Bence's improvements are on his left side. The Parkinson's medicine he
continues to take six times a day controls symptoms on his right, though
many days the medicine is slow to kick in or his symptoms worsen if he eats
too much protein, which interferes with the medicine.
By three months after the operation, Bence is feeling better. He's joking
as he sits back to show a reporter a tape of himself two years ago. It
shows him in cutoffs and a T-shirt, sweaty and writhing in a chair in his
living room. Just seeing the image makes him relax.
He knows his life isn't easy. It may never be.
But he's better now. "He's active, when he's on," Ethel Bence says, using
the term she and Jim use to describe how he feels when his medicine is
working. "He can go out and shovel the walk or mow the lawn" and "he even
can do handstands."
He also served as a spokesman for Parkinson's Awareness Month in April and
is helping to organize a May 17 walk in his community.
Bence, a self-described workaholic who once ran his own electrical
business, wants to write a book about Parkinson's and play more with his
sons. "I want them to know me as a dad, not an invalid."
And he wants to tell people about Parkinson's disease. "People just don't
understand it," he says.
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