Epilepsy is a neurological disorder where only about a third of patients can get complete seizure control with medication. Another third find some relief but with significant medicinal side effects, and the last third of patients never get seizure control despite being on very high doses of medication.
Thomas Henry, MD, University of Minnesota Physicians epileptologist and neurologist, is working to make a positive impact for those that cannot negate their seizures. “For as long as I can remember, I’ve been really interested in brain function. I found the very detailed analysis and approaches taken in neurology fit me very well,” Dr. Henry said.
One of Dr. Henry’s patients, Erica Reinke, has experienced this positive impact, and it has led to an improved quality of life, as well as the option to have children without the risks associated from medicinal side effects.
“The biggest thing has been that my husband and I wanted to start a family, but I was on so many meds that we didn’t think it would be possible to carry biological children without risk of birth defects, not to mention the struggles that come with seizures and pregnancy," Reinke said.
Reinke’s seizures have always been frequent but fortunately not debilitating. “I have focal seizures, both aware and impaired, so the extent that I’m affected varies depending on the seizure. With my focal aware seizures, I’m only affected slightly; after a minute or so, I can generally go right back to whatever I was doing. With my focal impaired ones, I’m tired and it takes a longer recovery time, but I can still continue about my day, just at a slower pace,” she explained.
Epilepsy patients experience individual variability for the efficacy of medication. This necessitates an individualized diagnosis as well as treatment approach.
“Before I was seeing Dr. Henry, I felt like I was just another patient on a list. I would wait over an hour for a 10-minute appointment, only to have the doctor hear I was still seizing, prescribe a medication change and send me out the door. But with Dr. Henry, he listens,” Reinke said.
Dr. Henry’s passion for neurology has translated to his patient care and thus allows him to better treat patients who might be frustrated. Reinke noted:
“Sometimes, I come to him and ask about certain options; he will tell me why or why not that’s a good idea for me. He never just dismisses it as something I know nothing about. Basically, I feel like we fight my epilepsy as a team instead of just a doctor telling me what to do.”
After taking six different medications and still having daily focal seizures, Dr. Henry set Reinke on the path to receive a responsive neurostimulation (RNS) device. The RNS system detects unusual electrical activity that can lead to a seizure and responds quickly (within milliseconds) to seizure activity by giving small bursts or pulses of stimulation.
“With my RNS, I immediately noticed that my focal seizures were reduced in severity. I have had my RNS now for four years. I have seen about a 30% reduction in how often I seize, but even more noticeable is the reduced severity,” Reinke said.
Dr. Henry provides continued care to ensure the device is working effectively. RNS works similarly to a pacemaker in the sense that data is sent to an outside device, allowing neurologists to analyze what tweaks need to be made.
“The electrodes in the RNS system send us information from the parts of the brain where seizures start, and that data can actually be sent to a laptop that every patient receives as part of this treatment too,” Dr. Henry said.
This creates a large data repository and allows neurologists to tailor their care if needed.
Reinke got her RNS in 2015 and still sees Dr. Henry every few months. She and her husband had a son in 2018 and will soon welcome their daughter into the world.