The Henderson Gleaner, KY

Offering hope

Treatment may end life of pain
By ELLA JOHNSON
Courier & Press staff writer 464-7420 or [log in to unmask]
August 3, 2003

From the moment he wakes up until he falls asleep, Sam Fischer Jr. lives in almost constant pain. Uncontrollable muscle
spasms and contractions cause his body to jerk, twitch and twist, making it difficult for him to sit still, walk, talk
or sometimes even breathe.

Fischer, a 43-year-old Newburgh man, has generalized dystonia, a neurological movement disorder related to Parkinson's
disease. The condition has robbed Fischer of a "normal" life with his wife, Donna, and his daughter, Sarah, for more
than 10 years.

Later this month, Fischer will undergo a brain operation recently approved for dystonia patients called deep brain
stimulation, or DBS. The therapy could eliminate the pain Fischer suffers and help him regain control of his muscles
and his life so he can "get back to the normal world."

"After living with this for 11 or 12 years, I don't know what to expect" Fischer said of the surgery. "I don't know if
I will be handicapped anymore."

Deep brain stimulation therapy has been available for years to treat patients with Parkinson's or another related
disorder called essential tremor. But when Fischer first heard about DBS it had not been perfected for dystonia
patients.

When Phyllis Buskill, leader of the Western KY/Southern IN Dystonia Medical Research Foundation, attended an
international dystonia medical conference last fall and met a patient who had been successfully treated with DBS, "I
immediately couldn't get Sam off my mind," she said.

In April, the Food and Drug Administration approved the surgery for a limited number of patients with the severe form
of dystonia.

After the announcement, Buskill, who has a milder form of dystonia, said she immediately put Fischer in touch with
neurosurgeons at Allegheny General Hospital in Pittsburgh. Allegheny General is one of only four medical centers in the
country approved to perform the surgery.

Fischer was accepted into the hospital's DBS therapy program in June. His surgery is scheduled for Aug. 20 and 25.

"This is not a cure," stressed Buskill. "It's just a fix."

Fischer was 31 when he was diagnosed with dystonia. It was the year after he married Donna. Within a few years, the
disorder had dramatically changed the couple's lifestyle. They were no longer able to take leisure weekend trips out of
town and Fischer, once a mechanically inclined person, had difficulty doing even simple household chores, such as
mowing the lawn or tinkering on his car.

Fischer didn't put much thought into his health when the first signs appeared. One day, in June 1991, a co-worker at a
rental company noticed Fischer slightly shaking and asked if he was nervous.

A few days later, Donna Fischer noticed his right shoulder was starting to twitch. Within weeks, Fischer was stumbling
at work and he had to lean against a counter for support when he stood up.

"I felt like I was being pushed down," Fischer said. "You could tell something was going on, and it was painful. But I
didn't know what was happening and I didn't put much thought into it."

By August, Fischer's torso had started to twist and his condition continued to deteriorate, causing him to lose his
job. A local doctor, who suspected Fischer had dystonia, referred him to a neurologist at Indiana University in
Bloomington, Ind. It took several months before doctors confirmed the diagnosis.

Fischer has tried a number of medications over the years to control his symptoms with varying degrees of success. He
stopped going to IU after several years and started seeing doctors at Rush Hospital and Loyola University Medical
Center in Chicago, where he received botox injections to relax the muscles in his neck that control speech. He stopped
making the trips to Chicago, though, because of the inconvenience to his family.

"It wasn't worth the trip," Donna Fischer said. By then, Sarah was born and was growing into a toddler.

"The first year (Sarah) was born I had a hard time taking care of her," Fischer said. "I had a hard time accepting this
disease."

Fischer said his independent and strong-willed nature made it hard for him to admit he needed help. Losing his driver's
license last fall was another hardship.

Fischer said the illness has also taken a toll on his wife, a nurse at Deaconess Hospital. "It's been rough on her,
too," Fischer said. "She works third shift not because she wants to, but because she has to."

The schedule gives her more time to be at home during the day.

The illness has been difficult for the entire Fischer family, as they have watched a once robust man succumb to the
crippling effects of dystonia.

"If nothing else it has brought the family closer together," said Fischer's mother, Marilyn Reuber.

Reuber, Fischer's sister, Yvonne Herrmann, and his sister-in-law, Dawna Fischer, organized a yard sale recently to
raise money to help pay medical expenses related to the surgery, which will cost $60,000 or more.

Sam Fischer Sr. is coordinating transportation to and from Allegheny General for his son. A local pilot has donated his
service and an air-conditioned plane to take Fischer to Pittsburgh for testing before the operation.

Sam Fischer Sr. said a pilot and a private airplane are still needed to get his son back to Pittsburgh for the
operation and to get him home after completing several weeks of physical therapy.

Dr. Dan Whiting, a neurosurgeon who will perform the operation, said Fischer is scheduled for magnetic resonance
imaging, or MRI, on Aug. 14 to map the critical structures of his brain.

"That's one of the keys to locating where we are going," Whiting said.

The surgery will be done in two stages with Fischer sedated, but awake.

The procedure involves drilling two small holes in the top of his skull and connecting two hairlike electrodes to deep
brain nerves that are misfiring and causing involuntary muscle movements.

The electrodes will be connected to thin wires implanted just beneath Fischer's skin from the top of the head along
both sides of the neck to two battery-powered pacemaker devices, which will be implanted under the collarbone on each
shoulder.

The devices will be synchronized and timed to deliver electrical impulses to the targeted nerves in the brain to
prevent them from misfiring. The surgery will be followed by three to six weeks of physical therapy.

"The average person can expect improvement of function to some degree, but not near normalcy," Whiting said.

He said 90 percent of patients receiving DBS will experience improvement over a period of time. "It can take up to six
to nine months to find the final end point," he said.

No one knows exactly what causes dystonia, which can affect people from all walks of life, ages, races and genders.
Researchers have linked some cases to genetic factors, while others may be caused by certain medications or toxins,
stroke, trauma or traumatic birth injury.

Fischer was turned the wrong way in the birth canal during delivery and may have suffered a head injury.

Robert McAlister, executive director of the Dystonia Medical Research Foundation, said DBS offers exciting
possibilities for dystonia patients. He said out of the estimated 300,000 people living with dystonia in the United
States and Canada, roughly 3,000 of them have extreme cases of generalized dystonia and could benefit from the therapy.


Reuber has one wish for her son following surgery. "I just want to see him walk without being all bent over," she said.


Fischer said it is too early to know what the future might hold. He is taking life one day at a time after turning all
his worries over to God a few years ago.

"I would like to see how the operation goes," Fischer said. "I know it's materialistic, but I do want to eventually get
me another sports car."

One thing Fischer is certain about is his desire to have a better relationship with Sarah, who will celebrate her ninth
birthday 10 days before Fischer's surgery.

"We still have some type of relationship," Fischer said, "but it's not like it used to be."

SOURCE: The Henderson Gleaner, KY
http://www.myinky.com/ecp/news/article/0,1626,ECP_734_2155593,00.html

Reference:

Medtronic Home Page
http://www.medtronic.com/

Information for Medtronic Patients
http://www.medtronic.com/patients/patients.html

Shaking and Tremor
http://www.medtronic.com/patients/tremor.html

Medtronic Dystonia Resources:

News Release - Medtronic Activa® Dystonia Therapy - FDA HDE
http://www.medtronic.com/newsroom/news_20030415a.html

Movement Disorders Fact Sheet
http://www.medtronic.com/downloadablefiles/DystoniaHDE-MovementDisordersFactSheet.pdf

Movement Disorders Resource Roster
http://www.medtronic.com/downloadablefiles/DystoniaHDE-ResourceRoster.pdf

Activa Therapy Fact Sheet
http://www.medtronic.com/downloadablefiles/DystoniaHDE-ActivaTherapyFactSheet.pdf

Patient Profile (Paula Schneider)
http://www.medtronic.com/downloadablefiles/DystoniaHDE-PatientProfile(PaulaSchneider).pdf

Patient Profile (Peter Cohen)
http://www.medtronic.com/downloadablefiles/DystoniaHDE-PatientProfile(Peter%20Cohen).pdf

Activa Therapy Illustration
http://www.medtronic.com/downloadablefiles/DystoniaHDE-ActivaTherapyIllustration.pdf

Activa Therapy Milestones Timeline (Horizontal)
http://www.medtronic.com/downloadablefiles/DystoniaHDE-ActivaTherapyMilestonesTimeline(Horizontal).pdf

Activa Therapy Milestones Timeline (Vertical)
http://www.medtronic.com/downloadablefiles/DystoniaHDE-ActivaTherapyMilestonesTimeline(Vertical).pdf

Activa Therapy Disclosure
http://www.medtronic.com/downloadablefiles/DystoniaHDE-Disclosure.pdf

Activa Dystonia Therapy Disclosure
http://www.medtronic.com/downloadablefiles/DystoniaHDE-Disclosure(DystoniaTherapyOnly).pdf

Video
Medtronic Activa® Dystonia Video News Release
(QuickTime movie)
http://www.medtronic.com/newsroom/video/dystonia.mov

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