"Deep Brain" Patients Gather to Share Their Stories at Reunion

February 22, 2005
News Office: Carol Hyman (415) 502-6397

On Saturday, February 26, some 20 people will be honored guests in San Francisco at a very unusual reunion.

They are former patients of deep brain stimulation surgery -- known as DBS -- at UCSF Medical Center. They will gather along with their families, members of the UCSF medical care team, and others suffering from dystonia who want to learn more about this surgery.

MEDIA ARE INVITED TO COVER: Saturday, February 26, 11 a.m. - 3 p.m. Hyatt at Fisherman's Wharf 555 North Point Street, San Francisco

INTERVIEWS: Patients and UCSF medical staff will be available for interviews before and during the reunion.

Dystonia is a neurological movement disorder characterized by involuntary muscle contractions that force certain parts of the body into abnormal, sometimes painful, movements or postures. Dystonia can affect any part of the body including the arms and legs, trunk, neck, eyelids, face or vocal cords. While dystonia is not fatal, it is a chronic disorder. It is the third most common movement disorder after Parkinson's Disease and essential tremor, and it affects more than 300,000 people in North America.

Deep brain stimulation involves putting the tip of a hair-thin wire inside the brain in a special area that controls movement. The wire then runs up through a small hole in the skull and under the scalp down to a small device implanted under the collarbone. The device, called a neurostimulator, sends electrical impulses through the wire into the brain to control the movement center. Most dystonia patients have two surgeries-- one on each side of the brain.

Participants will include:

* 12-year-old Sara, whose dystonia had progressed to the point where she could not walk or use her arms. Now Sara rides horses, swims and is going to resume tap dance lessons.

* Traveling to San Francisco from Oregon is Dee, 51, who, until her surgery, could not feed herself and had to give up her family therapy practice.

* A family with three generations who have undergone DBS surgery will be attending. The youngest, Devin, age 16, had the surgery for dystonia, while his mother, 47, and grandfather, 76, have had successful DBS surgery for essential tremor.

Patients are traveling from Nevada, Oregon and throughout California to reunite with the medical team members who they say changed their lives through this procedure.

UCSF neurosurgeon Dr. Philip Starr, who performed the surgery on all of the patients attending, will be at the event and will speak about the risks and benefits of DBS surgery. UCSF neurologist Dr. William Marks, will give an overview of dystonia, and UCSF neurologist Dr. Jill Ostrem, will present a talk on who should consider DBS surgery.

In addition, other members of the neurological surgery team will talk about the surgical procedure, post-surgery programming of the neurostimulator, and realistic expectations of results.

In the afternoon, a panel of DBS patients and family members will discuss their experiences and participate in a question-and-answer session.

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