Over the course of 22 years Richard Shane estimates that he has experienced 2,500 simple partial and generalized seizures. However, thanks to epilepsy surgery Richard has now been seizure free for over eight years.
Adversity
In 1993 Richard founded his own marketing company, Treasure Chest, despite having frequent seizures adding an additional challenge to what was already a large endeavor. Richard explains that on occasion he “would hang up on clients during a seizure.” He would then need to “hit redial, apologize for the disconnect and explain that I have epilepsy” before continuing with their business. By being honest about his condition Richard was able to quickly return to the original conversation. Also contributing to Richard’s ability to succeed with running his own business was his competitive drive which was garnered from being an athlete. He was determined not to let epilepsy stand in the way of his goals and due to his competitive spirit and as being up front with his condition Richard was able to continually grow his successful business.
Support, Doctors & Treatment
After being diagnosed with epilepsy and seeing several doctors Richard spent two weeks at the University of Virginia’s epilepsy center undergoing in-patient testing. From there he continued his treatment at Columbia Presbyterian Hospital. While there Richard was initially presented with the option of surgery but he quickly dismissed the idea as he was adamant no one would remove a portion of his brain. He proceeded to attempt to treat his epilepsy with an ultimately unsuccessful mix of medications. The seizures continued at an advancing pace until eventually he was encouraged by his girlfriend at the time to continue his search for an effective therapy. He went to see neurologist Dr. Orrin Devinsky at New York University Langone Medical Center with the hope that he would be able to recommend a new medication or mix of medications that would finally help him control his epilepsy.
Instead of attempting a new treatment with medicine as Richard had initially hoped, Dr. Devinsky recommended the treatment option Richard had dismissed several years earlier – surgery. “Dr. Devinsky told me that no medication would control my seizures” Richard explains. While he was reluctant at first Dr. Devinsky explained throughout subsequent appointments with Richard that “the seizures could change who I am,” since they emanated from the part of the brain that controlled emotions. Richard continues that he also had reservations about the scar the surgery would leave but says Dr. Devinsky told him “if you are worried about a little scar on the side of your head” he had much worse problems than epilepsy. It was at this point he realized that his epilepsy may have been hindering his ability to weigh the consequences versus the potentially phenomenal benefits that epilepsy surgery offered.
He eventually agreed to have surgery which was to be performed by Dr. Werner Doyle, whom Richard enthusiastically describes as “brilliant.” After undergoing a series of tests and with his family by his side he went through the first of two surgeries at NYU Langone Medical Center. The aim of the first surgery was to accurately pinpoint the origin of his seizures. Electrodes were placed onto his brain and then his doctors waited for Richard to have a seizure. During the seizure the affected portion of his right temporal lobe was identified and the second procedure commenced. During this surgery the portion of his brain that was causing the seizures was removed. The surgery, completed in March of 2004 was successful and Richard has not had a seizure since.
Tips And Tricks
Richard’s best advice might be to trust the support offered by friends and family and by skilled doctors.
He admits that while attempting to manage his epilepsy he would ask “Why me?” After his surgery he asks the same question, but for a different reason. “Why am I so fortunate when so many others are still challenged by epilepsy?” As a result he has remained active in the epilepsy community, most notably through his work with FACES, a non-profit affiliated with NYU Langone Medical Center. The acronym FACES stands for the organization’s noble goal – Finding a Cure for Epilepsy and Seizures. In support of this goal FACES recently hosted a gala which raised over five million dollars. Additionally, Richard supports the epilepsy community by openly sharing his story and by being honest about his experiences with seizures. In 2007, Richard was profiled as part of a television feature about driving with epilepsy on New York’s CW11 news channel. The story, prepared by Mary Murphy, won the 2008 Gold Keyboard Award for Outstanding Enterprise in Investigative Reporting from the New York Press Club. Richard hopes that by continuing to be involved that others will also be fortunate enough to share the outcome he has achieved.
-Seth Friedman
Seth serves as the Finance Director on the Seize The World board of directors and was excited to write this Share Your Story piece about Richard “Richie” Shane. He spoke with Richard by phone two weeks before publishing the article and was amazed and impressed by Richard’s story.
One Response
Hi Richard, Did Dr. Doyle preform a right temporal lobectomy on you as he had done for me ? I was born with Epilepsy and was tired of that kind of life so I read Dr. Devinskys’ first book and made an appointment with him to ask for surgery. I was then prepared for what lied ahead and was operated on in Dec. 1999. That was the best thing I ever did in my life. Best Wishes to You ! Julie Modugno
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