Patients turn to social media to find specialty medical care

Anthony Thompson, Barrow patient.(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. 

Ahead of the digital curve

Thompson’s story and others like it have gotten the attention of leadership at Barrow. As a result, plans are in place to totally redesign the Barrow website in 2015. A significant investment is also being made on improvements to Barrow’s online second opinion program.

“We’re really seeing it emerge as a huge trend in healthcare. People want more information about their diseases and their doctors, and they want it all at their fingertips,” says Barrow Director of Informatics Judd Shaft.

For his part, Thompson is a big believer in the power of the web and social media to help people find the care they need.

“It kind of shocked me how many people in these online support groups had been told that their conditions were inoperable,” he says. “Many of those same people end up getting treated by Dr. Spetzler at Barrow. He is easily the most-referenced surgeon in those groups.”

He also noted that for many in the groups, their participation doesn’t end with recovery.

“We keep checking up with each other to this day,” he says. “We’ve made new friends—we call each other brain buddies.”

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