Growing Up with Epilepsy: Jeanny's Story

Jeanny has been having seizures since she was four months old. She has been on many medications throughout her life, but none has effectively controlled her seizures for a prolonged period of time.

When Seizure Surgery Is the Best Option

Because her seizures are difficult to manage and interfering with her life, Jeanny and her family are considering surgery as the next treatment option for her intractable epilepsy.

A Good Candidate for Surgery

Epilepsy surgery is not a good option for everyone, but Jeanny's doctors are confident that surgery could be effective for her. Jeanny is considered an ideal candidate for seizure surgery because she is young and healthy and has only one seizure type—partial seizures that cause her to stare and her arms to shake—a strong indication of a single-seizure focus. She has also had an MRI that shows a lesion, or abnormality, in the left temporal lobe of her brain. According to her EEG results, this abnormality corresponds to the area of the brain where her seizures begin.

Epileptologist Elizabeth Thiele, MD, PhD, adds, "We brought Jeanny into the hospital for continuous EEG monitoring lasting several days, enough time to see several of her typical seizures. We like to see at least three of the child's typical seizures so we can see if they consistently have the same features on EEG. Fortunately for Jeanny, her EEG monitoring showed us the irritability, or the site of the seizure on EEG was very similar to where the lesion was on her MRI, making us feel that she would be a very good surgical candidate."

Jeanny's doctors recommend resecting, or removing the abnormal part of her temporal lobe. Advances in MRI imaging have helped improve the outcome for all epilepsy surgeries, and data suggests that people with temporal lobe epilepsies have the best outcomes after surgery. The procedure will give Jeanny about an 80 percent chance of either curing her seizures or having a significant reduction in seizure frequency.

Learn about treatment options

A Difficult Family Decision

Jeanny is convinced that surgery is the right choice for her. She recently graduated from high school and is eager to start college and study pediatric nursing. She would also like to be seizure free so that she can get her driver's license. She feels that beginning college and being able to drive will make it easier for her to pursue her life's ambitions as she transitions into independence and adulthood.

Jeanny's parents, Jeannette and Teofilo, have struggled with the surgery decision. They are nervous about Jeanny leaving the safety and security of home to attend college. They worry that she might have a seizure without her family support system. However, they are equally nervous about the surgery and have needed time to research the procedure and ask questions before reaching a decision. After speaking with Jeanny's epileptologist and neurosurgeon, the whole family is finally in favor of the surgery and the procedure has been scheduled.

Presurgical Testing

Once surgery has been selected as the appropriate treatment option, more testing is typically performed to help doctors examine brain function or further localize the seizure focus. Jeanny's final test before surgery will be the WADA test, which looks at the temporal lobe brain functions of language and memory. Each person's language center is dominant in either the right or the left temporal lobe. Memory function is shared across both temporal lobes but may not be evenly distributed.

During the WADA test, doctors will put each half of Jeanny's brain to sleep for a few minutes. This will allow a neuropsychologist to test the language and memory functioning of each side of her temporal lobe in isolation. The results of the test will show doctors how much of the language and memory functions are located in the right and left sides of the brain and will help the neurosurgeon determine how much of the affected area can be resected. The goal is to remove as much seizure-causing tissue as possible without damaging Jeanny's memory or speech.

Jeanny Has Surgery

Following the taping of this video, Jeanny's WADA test was performed. The results of the test were not as informative as doctors had expected, so Jeanny's neurosurgeon elected to perform a limited neocortical resection, which meant that only the outer layer of the affected area of her temporal lobe was removed, sparing the inner structures of that area of her brain to minimize the risk of memory loss.

During the surgery, neurosurgeons made an incision just behind her hairline, removed a piece of her skull, and placed an electrode directly onto Jeanny's brain to record the electrical activity. This procedure, called an electrocorticography, confirmed that her left temporal lobe was generating epileptiform activity. Then, a computerized guidance system removed the area of Jeanny's brain causing her seizures. The procedure took about four hours, and Jeanny spent a total of four days in the hospital before going home to recuperate.

For about two weeks following the surgery, Jeanny was instructed to stay at home in order to rest and prevent infection while she was healing. She fortunately has experienced no side effects from the surgery, and her language and memory remain unaffected. While it is still too early to tell if the surgery will ultimately cure Jeanny's epilepsy, she has not had a seizure since the procedure. Jeanny will stay on her current medications for one to two more years and will continue to receive periodic EEGs. If she remains seizure free during that time, doctors will begin to taper off all medications. The prospect of remaining seizure free for the rest of her life is very exciting for Jeanny and her family.

Jeanny's mother, Jeannette, says, "I think we're going to be more relaxed about her. I hope she will accomplish everything she wants. I want a beautiful future for her."