For many patients, arteriovenous malformation (AVM) sneaks up. A sudden headache or a mix of strange and seemingly unconnected symptoms prompts a hospital visit, where the diagnosis is finally revealed. Robin’s introduction to the disease was no different.
In the early ‘90s a car accident left her with whiplash and what she thought would be an easy recovery. But a persistent headache sent her back for an MRI, which is when doctors found the lesion. AVM is caused by blood coming from high pressure, high flow arteries that doesn’t slow down in time to enter the much more delicate veins. This can create a wide spectrum of issues, from aphasia to other cognitive or motor deficits that can leave both doctors and patients guessing.
“They asked how long I’d been having my symptoms and I said ‘What are the symptoms?’” recalls Robin. She would soon become very familiar with the signs and symptoms, and like so many suffering from AVM, reorganized her life in order to stay healthy.
But in 1996, Robin had her first seizure, which is how she came to meet Robert Rosenwasser, MD, MBA, the Jewell L. Osterholm Professor and chair of Jefferson’s Department of Neurosurgery, as well as the president of the Vickie and Jack Farber Institute for Neuroscience.
“I’ve treated more than 6,000 AVM patients since coming to Jefferson 20 years ago,” he says, “In that time I’ve learned a lot and even helped to develop some of the standard techniques for treating the disease.”
In the care of Dr. Rosenwasser, Robin’s prognosis has remained positive and she has been living with the disease for more than 20 years, and is no longer at risk for bleeding episodes, which are among the greatest risks to AVM patients.
But it goes deeper than just survival. A patient support group and organizations like Kendall’s Crusade have helped AVM sufferers to truly live life after diagnosis. “Though the people are all unique, there’s a similar thread that runs through every experience,” says Robin’s husband, Chris. By sharing information, tips, fears, and hopes, Robin, Chris, and all those fighting the disease are able to roll with the punches and live fully with each “new normal.”