Doctors said she was having panic attacks, but Mandi is a keen observer, and the episodes reminded her of the epileptic seizures she had as a child. “It feels as though something is twisting around in my stomach,” she explained. “I hold my breath, and then after that, I’m unaware. My husband tells me that I say the same words repeatedly for about two to three minutes before I recover.”
When Mandi was in kindergarten, she had seizures almost every day, and none of the medications seemed to help. MRI showed scarring in the hippocampus — a small but important region on the inner surface of the temporal lobe — on both sides of the brain, while EEG showed that the overwhelming majority of her seizures were arising from the left. The test results were analyzed by all of Cleveland Clinic’s experts conferring together, and although the findings were complicated, the team concluded that epilepsy surgery was a promising option and recommended the procedure.
The potential risks and benefits of surgery were discussed with Mandi’s family. They were aware of the difficulties and the possibilities for the outcome, but decided that epilepsy surgery was her best chance for a better life. At 12 years of age, the troublesome portion of Mandi’s left temporal lobe was removed. Everyone rejoiced when her seizures stopped completely, and after a few years, she was on no medications.
In adulthood, it seemed that Mandi’s seizures had returned, interfering with her busy and productive life as a new wife, caregiver for disabled adults, deaf interpreter, sign language teacher and accomplished musician. Recently, her doctor became concerned and advised her not to drive. Results from an EEG, or electroencephalogram, study were complicated but clearly showed that Mandi was correct and the episodes were seizures. She is now trying a new medication.
Mandi underwent the most frequently performed type of epilepsy surgery, and recent studies show that temporal lobe surgery stops the seizures completely for 60 to 70 percent of patients for at least 10 years. The procedure is only recommended when the epilepsy cannot be controlled by medications, and when a detailed study has pointed out the exact region to be removed. Temporal lobe surgery has greatly improved the lives of thousands of patients worldwide, but in some cases, the seizures return. Most seizure recurrences are within the first six months after surgery, but sometimes, for reasons that are not completely understood, the seizures come back after many months or even years.
A previous For Better piece brought to mind that epilepsy should be looked upon as a medical condition rather than a strange and mysterious mental illness, and highlighted a person whose epilepsy is likely to be self-limited. Mandi’s experience reminds us that for many people with epilepsy, the journey is difficult. An estimated 2.5 million Americans have epilepsy, and 25 to 35 percent of them live with ongoing seizures. There is still much work to be done, and curing epilepsy for everyone will require increased public awareness and ongoing dedication, commitment and research.
Mandi and her husband Robbie live life to the fullest and face epilepsy together.
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Epilepsy May Occur Again After Surgery originally appeared on usnews.com
