CEDAR CITY - The lone family photo taken more than two years ago
when Peter Jensen could pose and smile without convulsing into
horrible fits sits on a table next to his hospital bed.

"I took it with us so that Peter could look at it every day and see
his children," Jensen's wife, Roshana, said during a telephone
interview.

Jensen has been battling Tourette's Syndrome - a neurological
disorder characterized by tics and involuntary rapid, sudden
movements or vocalizations that occur repeatedly in the same way -
since being diagnosed at age 11.

Doctors said Jensen's was the worst case ever diagnosed in the state.

Prior to his surgery, he'd been heavily sedated for six months at
Kolob Regional Care and Rehabilitation Center to keep his body from
deteriorating from the muscle spasms, which would have left him
incapable of being accepted for the new Food and Drug Administration-
approved clinical study.

The study requires candidates to be 18, have severe TS not
controlled by medication, physically fit for surgery and able to
travel to Cleveland repeatedly.

Jensen was one of only five patients chosen.

The preventative care enabled him to fulfill the requirements and
Jensen underwent the second phase of the medical procedure called
deep-brain stimulation Friday at University Hospitals of Cleveland
in Ohio.

Deep-brain stimulation works much like a heart pacemaker by
providing a stream of electrical currents to counteract the part of
the body that is not functioning properly. Instead of the heart, it
sends currents to the area affected by the brain disorder.

During the first of three phases of the surgical process, electrodes
are inserted into specific spots in the brain. Jensen was unable to
comment because he was recovering from surgery, but Roshana said the
initial procedure, which took place June 3, took 12 hours. The
second phase consisted of connecting the inserted electrodes through
wires under the skin - beneath the scalp, neck and upper chest - to
a replaceable a battery implanted beneath the collarbone.

"The surgery today took three hours," Roshana said. "He's doing
really well, and actually has done well through both parts of the
surgery. We're now waiting for the time to turn on the generators,
which will be in about two weeks."

According to a press release, only a handful of people have received
this treatment. Jeff Matovic, a Lyndhurst, Ohio, resident who grew
up in Bay Village, was the first person in North America to undergo
deep-brain stimulation for TS. Since his surgery in April, 2004, he
has not had any of the vocal or motor tics that once ravaged his
body and forced him to drink from a sippy cup at the age of
30. "Jeff and Deborah Matovic came down and talked to us and visited
with us and that was an incredible experience," Roshana said. "All
the people at the University Hospital have been stupendous and taken
good care of Peter and good care of me. It's just like having a big
family out here. It's wonderful."

Deep-brain stimulation has been used for more than a decade to treat
other movement disorders, such as Parkinson's disease, tremors and
dystonia, which distorts posture. About 30,000 people around the
world now have such brain implants, the press release said.

However, doctors at University Hospitals of Cleveland are careful to
point out that not everyone with TS requires treatment. The first
line of treatment is medication, which can be very effective.
Surgical treatment is considered a last resort, the news release
said.

Drs. Brian N. Maddux and Robert Maciunas are Jensen's neurosurgeons.
Neither would divulge information regarding his case. Eric
Sandstrom, acting media relations director of University Hospitals
of Cleveland said the physicians are not trying to be uncooperative,
but are in the midst of research and Jensen is their utmost concern.

"Any information is treated with care because of HIPPA and because
Peter is one of five patients in the clinical trial here, and
although he's the first, four others are to follow him in the next
few months," Sandstrom said. "The doctors who are performing the
deep-brain stimulation do not want publicity or information be
divulged about any of these patients until the completion of the
clinical study."

Meanwhile, Roshana said she does a lot of waiting. While waiting,
she does a lot of thinking and becomes overcome with gratitude, she
said.

"First, I want to say 'thank you' to all the people who helped us
raise $118,000 because that has really been what's got us out here
and paid for the surgery," Roshana said. "Secondly, for everyone who
has expressed concern and support, more information will be coming
as things move along, but Peter is fine and doing well."


Originally published June 11, 2005

Source:
http://www.thespectrum.com/apps/pbcs.dll/article?
AID=/20050611/NEWS01/506110303/1002


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