By Dan Trudeau
U.S. Sen. Charles Schumer (D-N.Y.) joined neurologists and patients at a news conference Monday as they opened the doors of Long Island Jewish Hospital’s Chiari Institute in Great Neck.
The institute will offer surgical, medical and psychological treatment to sufferers of Chiari malformation, a debilitating neurological disorder that is caused when the cerebellum portion of the brain swells and prevents spinal fluid from circulating properly.
Specialized treatment and exclusive technology will make the institute a unique resource for the hundreds of thousands of people worldwide who suffer from the disorder and bring distinction to the hospital and the state of New York, Schumer said.
“This institute is just beginning to do its great work,” Schumer said. “With new technology, doctors can solve this problem and make people fully productive again.”
The disorder can cause chronic fatigue, severe head and neck pain, muscle weakness and sleep apnea along with a host of other problems, doctors said. In the most serious cases, fluid-filled cysts that form in the spine as a result of the disorder can lead to paralysis.
Danish James, 8, of Queens Village was one of several patients at the conference. His father, John James, said he realized his son was having difficulty in January 2001 when he repeatedly complained of headaches and watched television with his neck slanted at an awkward angle.
After visits to pediatricians and orthopedic specialists, Danish was referred to LIJ, where he successfully underwent surgery last year. Since the surgery, Danish said he has regained some strength and sensation in his right side, which became increasingly weak as his disorder developed.
“Before every time I walked I felt a little strange. I noticed before the surgery I can’t do anything with my right hand,” Danish said. “Can you believe that I can even lift a 5-pound weight? Before I could only lift a 2-pound weight!”
The complexity of the symptoms and a lack of awareness about the disorder have led many qualified doctors to misdiagnose the disorder, creating a need for a special center, said Dr. Thomas Milhorat, chairman of LIJ’s neurosurgery department and director of the new institute. Milhorat said that half of the Chiari surgeries performed at LIJ last year were necessary to correct mistakes made by doctors at other hospitals.
“Patients are frequently misdiagnosed for years as suffering from conditions such as chronic fatigue, fibromyalgia and psychiatric disorders before a proper diagnosis of Chiari malformation is made,” he said.
Milhorat attributes part of LIJ’s success with treating Chiari cases to the use of technology known as color Doppler ultrasound monitoring, which allows surgeons to measure and monitor the circulation of fluid between the brain and the spinal cord during surgery.
Doctors said restoring a normal flow of the fluid is the vital part of successful Chiari surgery and that the Doppler technology allows surgeons to better understand which measures are effective while the procedure is performed. Doctors at LIJ and the center will be the only surgeons in the world utilizing the technology in Chiari treatment, an LIJ spokesperson said.
Also present at the conference was 17-year-old Joanna Reid of Atlanta, Ga. Reid is the national spokesgirl for Chiari Kids, a support group for children suffering from the malformation and its effects. Reid’s case was particularly serious, she said, and it took five surgeries to sufficiently treat her condition and prevent complete paralysis from setting in.
Reid, a straight “A” student, said she wants to attend either New York University or Northwestern University and become a neurologist to help people suffering from Chiari.
“Thanks to these (doctors), I’m hoping to lead a normal life,” she said.
Reach reporter Dan Trudeau by e-mail at Timesledger@aol.com, or call 718-229-0300, Ext. 173.
