Having experienced and researched her troubling condition, Gilstrap knew well what it took to diagnose and treat her. “I have Cavernous Malformation,” she told the E.R. medical personnel after regaining consciousness. She explained that even though she’d evidently been born with this relatively-rare disorder, she’d first learned of it at age 28. She added that the only known treatment for the accompanying brain hemorrhage involved deep neurosurgery.
Unfamiliar with the malady, the staff declined to order any diagnostic scans, opting instead to regard her as they would any epilepsy patient. The ER physician asked whether she had taken her anti-convulsive medications. When she replied that she hadn’t, he surmised that her therapeutic level had dipped, and released her from care.
Upon returning home, her spouse phoned local specialists in repeated attempts to convince them she needed an MRI. The matter didn’t lack for money, or any type of government program pre-approval. “We both had adequate health insurance coverage through our employers,” Gilstrap said. The major hurdle? “Many in the vast medical community had no familiarity with Cavernous Malformation (C.M.) or similar disorders. I’ve had to become an advocate for myself, and others who endure this affliction.”
Although study findings vary, they estimate approximately 0.5% of the population have C. M.. Their symptoms may sometimes manifest with brain bleeds.
Gilstrap’s continuing quest for answers led her to the top neurosurgery specialists in California’s Bay Area. “My first deep brain operation took place when my condition originally presented in 1987,” she said. “I’ve had three more bleeds and deep surgeries since, performed by Dr. Gary Steinberg at Stanford University Medical Center.”
Her most recent, in March of this year, resulted in her undergoing physical rehabilitation to master walking with a cane. She remains vigilant about avoiding certain medications, such as aspirin or other blood thinners.
In further internet exploration, Gilstrap encountered the story of Boston Red Sox prospect Ryan Westmoreland. Also in March of 2010, this nineteen-year-old found his career hopes interrupted by severe headaches and numbness, diagnosed as a cavernous malformation, or cavernoma. He underwent a successful five-hour procedure at Barrow Neurological Institute, St. Joseph’s Hospital and Medical Center in Phoenix. A Red Sox spokesperson reported that the outfielder had come through the complex surgery well, but would face a difficult period initially before beginning his recovery.
According to website, “celebritydiagnosis.com, Teachable Moments in Medicine,” a cerebral cavernous malformation (CCM) is a collection of small blood vessels in the central nervous system (CNS)…enlarged and irregular in structure and takes the shape of a characteristic honeycomb (or mulberry) pattern. The walls of the CCM capillaries are thinner than normal and less elastic,…prone to leaking. Cavernous malformations can occur anywhere in the body, but usually only produce symptoms when…found in the brain and spinal cord. There are familial (inherited) and sporadic (occurring for no clear reason) cases of CCM. Researchers have discovered three different genes associated with CCM. Studies are currently underway to understand the relationship between the mutations of each of these genes and their corresponding symptoms.
Quick to express appreciation for her devoted mate, Rick, Gilstrap has launched an online support network for C.M. patients. She encourages readers to visit her website at http://www.avmsurvivors.org/group/cavernousmalformationsupportnetwork.
“I’m making my story public,” she says, “because I want the community to learn about this condition that might affect someone they love. I hope more awareness leads to more research that someday brings us a cure.”
By F. C. Blake
Of the Independent