San Luis Obispo Tribune: A Song For A Cure
October 6, 2006
by Sona Patel
(Editor’s Note: This story originally appeared in the San Luis Obispo Tribune.)
16-year-old Robbie Clements of Los Osos will sing a Beatles tune today at a concert to raise money for research on intracranial hypertension - a painful neurological disorder he developed at age 12
Sixteen-year-old Robbie Clements of Los Osos used to go through one bottle of Advil a week for his severe headaches.
When his blood started to thin excessively, he resorted to high doses of morphine and Vicodin to temporarily alleviate the pain.
It has been four years now, and doctors are still searching for a cure for Clements’ condition: intracranial hypertension, a neurological disorder in which brain fluid pressure within the skull is too high, causing severe headaches and possible vision loss.
Clements developed the disorder at age 12, three months after a garage door in his previous home in Morro Bay fell on him and struck part of his spine. His mother, Dori, blames the accident for the disorder, though doctors have not made that connection.
When the teen first became ill, he and his mother made frequent trips to Sierra Vista Regional Medical Center in San Luis Obispo, where doctors diagnosed Robbie as having “pseudotumor” whose symptoms were analogous to those of a brain tumor. The diagnosis is a broader term for the condition he suffers.
Eventually they turned to UCLA Medical Center, where Clements is seen two to four times a month now, in addition to receiving routine surgery.
In hopes of raising awareness and money for research, Clements plans to sing a Beatles tune today at a fundraising concert near Universal Studios to benefit the Intracranial Hypertension Research Foundation.
Good Days and Bad Days
Four years ago, Clements was an active teenager who played football and enjoyed sailing and surfing.
Now, his mother said, the Morro Bay High School student is home-schooled 90 percent of the school year and refrains from rigorous physical activity.
Clements categorizes his good days as a time where the pain in his head is not too overbearing. He can get out of bed, play drums and watch TV.
On a bad day, however, he gets sick, develops severe headaches and is forced to take morphine or Vicodin to temporarily ease the pain.
“One to two days of the week I’m hyper,” he said. “Two to three days I’m normal. And three to four days I’m a zombie.”
He tried taking Advil to stop the pain, but even a bottle a week didn’t help, and the high dosage began to cause excessive thinning of his blood.
According to the Intracranial Hypertension Research Foundation, there is currently no specific drug or treatment available to alleviate the condition.
The foundation supports medical research into the disorder, including why it happens and possible treatments.
According to Emanuel Tanne, M.D. chairman of the foundation, the disorder can be alleviated with shunt implants, or small plastic tubes placed inside a fluid-filled chamber of the brain and drained to another part of the body when pressure gets too high. He said the complications resulting from the surgery are extremely risky, however.
“The surgery raises new complications like infection, seizures or meningitis,” Tanne said. “It has a 50 percent failure rate.”
Clements has gone through multiple, painful operations to replace a shunt in his brain. The shunt has to be taken out from time to time because leaving it in could cause such complications.It gives Clements temporary relief but not enough to give him a pain-free week.
Despite the lack of progress in finding a cure, Dori Clements still has hope.
Shortly after the garage door incident, she said she developed “post-traumatic shock” where she suffers from nightmares and emotional distress.
But, “when I watch what my son has gone through,” she added, “it makes mine small potatoes.”