(March 2015) - It’s a story that has been told many times in these pages: A patient is told that they are afflicted by an inoperable brain lesion, only to find hope and—often—a cure by traveling to Barrow Neurological Institute.
The story of Tony Thompson, a 29-year-old artist from upstate New York is no different in that regard.
However, how he found his way here highlights an emerging trend across medicine—people using social media communities in their effort to find specialty medical care.
Bleed after bleed
Thompson first experienced the symptoms of what would eventually be diagnosed as a cavernous angioma—a benign tumor composed of dilated capillaries—in September of 2011. The tumor was located in his brainstem, and when it began to bleed into the surrounding tissue, his symptoms quickly worsened.
“I was just shocked that these symptoms progressed to something like this, to the point where I couldn’t even stand up, and to find out that there was actually blood in my brainstem,” says Thompson. “I am very healthy and active, so to have this random thing making me lose control of my body was terrifying.”
He would eventually spend 57 days in the hospital recovering from the initial bleed. During that time, his search for answers began.
Wanted: A second opinion
While Thompson was in rehabilitation, friends of his family were hard at work finding neurosurgeons specializing in the treatment of lesions of the brain stem. They soon realized that they would be dealing with a very short list, and that Robert Spetzler, MD, of Barrow was at the top.
However, as Thompson relates, his research into the work of Dr. Spetzler had a distinctly social flavor.
“My research was mainly through Facebook. I was able to get in touch with people—some who had already been treated at Barrow by Dr. Spetzler and his team—who had great stories of recovery. Some of them couldn’t find anybody willing to perform their surgery for years before they found Dr. Spetzler.”
After his cavernous angioma bled for a third time, Thompson decided to travel to Barrow and join their ranks. He is now back at home, continuing rehabilitation and hoping for the best.
"I still have a long way to go, but my symptoms have slowly gotten better after surgery," Thompson said.