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A year later, rare disorder keeping teen in agony
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JEFFERSON -- It's called the suicide disease, because the pain becomes so unbearable that some of those afflicted with it see no other way to make it stop. Township resident Lauren Lopes, 16, was diagnosed last year with "Trigeminal Neuralgia," a disease in which the blood vessels in the brain are wrapped around the nerves strangling them, causing shooting pains throughout the face. Lopes has been through it all in the year-plus that she's had this illness. She was misdiagnosed at first with depression, and then chronic headaches. She was given anti-convulsant medication. She had brain surgery last July in Pittsburgh, and it didn't work as hoped. "You don't see this in an MRI," her mother, Margo Lopes, said during a recent interview. "it's strictly in diagnoses." |
Lauren Lopes was diagnosed last year with Trigeminal Neuralgia, a disease in which the blood vessels in the brain straddle the nerves, causing shooting pains. |
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Margo Lopes, the township's public works secretary, said there will be a Sept. 8 picnic fundraiser at Fireman's Field to help pay for Lauren's medical care. Lauren is going back to Pittsburgh to see her specialist, Dr. Peter Jannetta, on July 17. It's likely she'll have more brain surgery. Mayor Russ Felter said the fundraiser is being organized through his office and that the township is looking for whatever support people might want to offer. Felter said he spoke to Margo Lopes a couple of weeks ago and said the family seems to be holding up pretty well. "As you would imagine, it's certainly hard," he said of the toll the disease has taken on Lauren and her family. When township officials learned of the medical bills piling up, they decided that it was time to take some action. "We just thought to help Margo and Gary (Margo's husband) that we would do a fundraiser," Felter said. Lauren Lopes' initial surgery in 2006 consisted of a Teflon-like pad placed between the blood vessels and nerves to relieve the pressure. This is known as a micro vascular decompression. Her mother said the disease is especially painful in children because the brain is still growing. Lauren doesn't go to school anymore, she can't, her mother said. "Her quality of life is she doesn't go anywhere but to doctors and ER visits," Margo Lopes said. "She can't socialize unless people come to her." Attempts to reach Dr. Jannetta in Pittsburgh were unsuccessful. The Mayo Clinic Web site states that the trigeminal nerve originates deep within the brain. The nerve leaves the brain and travels through the skull, eventually dividing into three smaller branches, which control facial sensation. The pain usually strikes due to contact between a normal artery or vein and the trigeminal nerve at the base of the brain. This places pressure on the nerve as it enters the brain and causes the nerve to misfire. The pain strikes in the sufferer's head, eyes, ears and face. The attacks can last anywhere from several hours to days at a time. Physical nerve damage or stress may be the initial trigger for trigeminal neuralgia, according to the Web site. The pain attacks can be triggered by just about anything: loud noises, motion, washing hair, brushing teeth, eating and being in florescent light and sunlight. The Mayo Clinic describes the "shooting, jabbing" pain as "lightning-like or electric-shock-like," or "like having live wires in your face." "It is extremely important to get the word out because no one knows about it and it is a horrible disorder to have and rare in kids my age," Lauren Lopes wrote in an e-mail. "They call it the 'suicide disease' because the pain becomes unbearable at times. ... It's been painful and frustrating for me because there's no one I know in Jefferson that has this disorder" with whom she can relate. Margo Lopes said her daughter was diagnosed in May 2006, and doctors first thought the pain might have been dental related, so she got braces. The Lopeses knew they were dealing with something different when, prior to her diagnoses, Lauren collapsed at school because of the lights affecting her eyes. "She's on morphine, actually," Margo said of how her daughter copes. She said her daughter has been to the emergency room more than a dozen times since the year began. -------------------------------------------------------------------------------- Posted 7-11-07 |
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