His head throbbed with excruciating pain as if someone was continually bashing it with a brick-every hour of the day and night. Jim’s pain was beyond belief. Although he had experienced headaches for many years, these headaches never let up. He was no longer able to sleep or to function well at his job of 13 years as a movie theater manager. Then began the long journey looking for a cause for the extreme headaches and bizarre symptoms he endured. Thus, he searched for a doctor that could help him.
The first doctor suggested something for depression or nerve pills. The pain continued. The second doctor thought the root of Jim’s pain was allergies.This treatment again failed and soon Jim was back in his office with extreme disorientation, speech defects and an unnatural balance. This allergy doctor called for an MRI which proclaimed a slight abnormality in the brain. They titled it “unremarkable”. Stroke-like symptoms continued along with the severe headaches. Jim found a neurologist in his own home town. Again, the doctor could find no problems. Then one day, Jim came home disoriented and could find no communicable speech at all. He was glassy-eyed and was slobbering down his tie.
Jim’s wife Becci kept an accurate report of events to try and help the doctors figure out what was wrong with Jim. Becci continues to be Jim’s advocate to this day. She called the neurologist and explained to him the symptoms and he said, “I want to see you both in my office tomorrow. Jim told me he was fine.”
After running every test imaginable, including: spinal taps, angiograms and blood tests, Jim’s ailment was still unnamed. Eventually the neurologist convinced a neurological surgeon to do a biopsy. The surgeon was unconvinced to do a brain biopsy as it was very risky in the area that he would have to invade. He performed a muscle biopsy instead. It proved nothing in the way of a diagnosis. A decision was made by both doctors that a brain biopsy was in order for treatment at best! The day before Thanksgiving in 1993, Jim underwent the brain biopsy, a risky and invasive process.
The neuro-surgeon met with Becci in the waiting room and described his amazement to the particulars of the surgery. A diagnosis was finally found– a rare form of Cerebral Vasculitis. It was called Granulomatous Angiitis of the Central Nervous System. (GACNS). Since it is so very rare, we refer to it more commonly as CNSV. Jim was immediately treated with prednisone and Imuran. And a barrage of other medications, including Dilantin and meds to thwart the side effects of the medications.
Things were looking better until the doctors tried to reduce the prednisone too drastically. Jim suffered the worst headaches in his life! While the doctors could not agree whose responsibility it was to handle the drastic call, Becci called 911 to get the help Jim needed.He suffered three brain hemorrhages and was hospitalized for many days. His neurologist called him a ‘miracle’.
Jim has been off of prednisone for a year now and is now at half dose of Imuran. His next task of medicine reduction will be Methotrexate. He will never be off all medications with this disease but at least he may be able to eliminate the more dangerous ones.
Jim is a “miracle” in that he never gives up and has never lost his sense of humor. He never fails to help others with vasculitis and continues to research the disease.
For those newly diagnosed, he suggests that people keep positive and take life one day at a time- do not think too far ahead. This advice has served Jim well. He is now focusing his energies into supporting others with vasculitis find accurate information and support.By Jim, Becci and Cindy
Published: February 2007
To read more stories, please visit the Vasculitis Stories landing page.