Trailblazing treament: Patient part of pioneering innovative treatment for epilepsy, getting life backTweet
By Dawn Brazell
Dr. Jonathan Edwards and patient Erick Gordon celebrate how the new technology is helping Gordon. photos by Sarah Pack, Public Relations
Erick Gordon can crack a joke now.
Most wouldn’t think much of that except his family and friends who watched the young adult’s personality and sense of humor disappear after a diagnosis of epilepsy in March 2007. Gordon, who had never had a seizure up until that time, began to have 30 grand mal seizures a month.
It meant he couldn’t drive. He had to drop out of school. He lost his social life and felt his personality and everything important to him slipping away.
Gordon can smile about it now that he’s getting his life back.
He has tried six medications to find out what works and volunteered to be in the NeuroPace RNS System Pivotal Clinical Investigation that was completed May 2011. The responsive neurostimulation device received Federal Drug Administration pre-market approval last month. Gordon, 25, now has a girlfriend and plans to start back to school. He was one of the first to celebrate approval of the technology, as was his physician Jonathan Edwards, M.D., who is director of MUSC’s Comprehensive Epilepsy Program.
The new technology is part of the rapidly evolving field of neurostimulation, said Edwards, explaining that there are many different forms being used for a wide range of conditions from Parkinson’s disease to certain psychiatric conditions. What is different about this newly approved therapy is that it is responsive. Other forms have been used mostly one-directional, where a stimulus is used in the brain on and off throughout the day to either prevent a symptom or improve a symptom, but they don’t actually respond to neurological activity.
“This responsive neurostimulator is a very clever device. It’s essentially a small microprocessor that’s placed in the patient’s skull and a couple of small electrodes about the size of spaghetti are placed in a person’s brain at the source of the seizures.”Neurosurgeons place the electrodes into the brain using stereotactic surgery where imaging data is correlated to a three-dimensional space so the electrodes can be placed with pinpoint accuracy at the site of the seizure activity. The NeuroPace device records electrical activity from the brain, and the patient has a laptop computer with a wand that can wirelessly download information from the device. Physicians can program it to detect the patient’s seizures, adjusting the methods of delivery and settings over time that best help the patient.
“Then we can take it a step further and have the device interfere with a seizure at its onset, often before a patient feels anything. As that electrical signal of a seizure starts, the device will give a little electrical stimulus and that basically interferes with the progress of the seizure and disrupts it. It sort of hits it on the way out of the gate and neutralizes it before it can actually become a seizure.”
Edwards is excited about the new treatment because it helps a small, but critical subgroup of epilepsy patients who are unresponsive to medications and ineligible for surgery given the area of the brain that’s affected or the number of epileptogenic areas. Edwards said the device allows them to help patients who had run out of options.
In one out of three patients, the medication doesn’t control their seizures so this offers hope for them. The device also may allow patients to need less medicine to control their seizure, which is a win, he said.
Although Gordon is not seizure-free, his quality of life has dramatically improved, Edwards said. “His improvement has been more than just his seizure counts. He is much more alert. His sense of humor is coming out. His personality is coming out - his ability to converse with others and plan for the future. Those were things not on his radar just a few years ago.
The other exciting development is the new door that the technology opens.
“This is a whole new territory now. We’re finally having a conversation with the human brain.”
This is just the first generation of the device, so Edwards is looking forward to future versions with more sophisticated microprocessors. “If you think about what is moving forward quickly, it’s microprocessors. Think about what your phone can do now compared to what it could do 10 years ago.”
|Erick Gordon gives his mother, Karen St. Marie, a hug. She started the South Carolina Advocates for Epilepspy group to help her son and others.|
Edwards praises patients, such as Gordon, who enter the clinical trials to get this technology approved. “He made it clear to me that he wanted to be part of something that could help others,” he said of Gordon’s participation. “Yes, the people who developed this technology in Silicon Valley are real pioneers here, but if you think about it the patients are the real trailblazers. Because of Erick and other patients like him who participated in this trial, this new treatment opportunity is there now for patients he’s never going to meet.”
Edwards said he wants to get the word out to patients whose seizures aren’t adequately being controlled to not give up hope because new options are always coming out.
“If they haven’t seen an epilepsy specialist, than they should go see one. With this kind of device, it’s an exciting time to be in neurosciences. We’re doing things that 10 or 15 years ago seemed like something from Star Trek, and we’re doing it now in 2013, and we’re just getting it started.”
To see the full multimedia package, visit MUSC’s News Center at www.musc.edu/pr/newscenter/2013/NeuroPace.html.December 23, 2013