How Judy Found Freedom from Epilepsy with eCOG

At 19, Judy Noble had her very first stroke while lying in bed one night at her home in Buffalo, New York. She was taken to the emergency department and was later diagnosed with epilepsy and put on medication to control the seizures. This marked the beginning of a winding path for Judy that would be full of highs and lows on her journey with epilepsy and seizures that would span more than four decades.

Judy eventually married and had a daughter and the family later moved to Oklahoma for a job opportunity in July 1977. Judy had a son, and in 1983, she started working for McDonalds. Judy loved her job and the people she worked with, but she was still having seizures years after being diagnosed and put on medication.

“One minute I was standing there at the McDonald’s drive-thru passing out orders, and the next thing I was on the floor having a seizure,” she recalled. The seizures would range from very minor – where Judy could continue what she was doing and just feel a little cloudy for a few minutes – to much more serious. The serious seizures would leave Judy incredibly fatigued and unable to continue working for the day, so she would need to be picked up and taken home where she would sleep for up to 24 hours. The next day Judy would be fine and able to return to work.

Judy did not notice any particular pattern with her seizures, but she did recognize a few triggers.

“Sometimes, if I was watching something really creepy on television, I’d have a seizure. It was like I knew something was going to happen,” she explained. “There was a lot of déjà vu type of seizures.”

Sometimes Judy would have two or three minor seizures per day and could carry on as normal, but other days she’d have a severe seizure and it would wipe her out — there was no telling how each day would be.

Epilepsy is a neurological disorder that causes recurring, unprovoked seizures and is the 4^th most common neurological disorder in the world. It can occur as a result of a genetic disorder or a brain injury from stroke, a brain tumor, head injury or a central nervous system infection. There are many different types of epilepsy and different kinds of seizures that generally start between the ages of 5 and 20 years old. The CDC reports that over 3 million people in the U.S. have epilepsy and of that, almost half a million are children. There are approximately 41,000 Oklahomans living with epilepsy.

Over the years, doctors added more and more medications to Judy’s regimen, which left her constantly exhausted and experiencing negative side effects. Some of the epilepsy medications caused Judy to feel anxious and depressed, so she was prescribed anti-anxiety and antidepressant medications as well. After many years of medication and ongoing seizures, Judy found OU Health neurologist Bhrugav Raval, M.D., in 2019.

Dr. Raval admitted Judy to the hospital to have an Electroencephalogram (EEG). An EEG is a common test that records the electrical activity of the brain, as well as recording seizures to help determine the type of seizures patients are having. People with epilepsy may have changes in the pattern of their brain waves even when they aren’t having a seizure and these can be picked up on EEG. Judy had had several EEGs over the years, but she usually did not have any seizures during the tests. Dr. Raval took Judy off her epilepsy medication for a short period and was able to record a number of significant seizures which helped him diagnose Judy with a cavernoma – a benign small capillary based tumor, in the left uncus of the temporal lobe, and he referred her to OU Health neurosurgeon Andrew Conner, M.D.

Cavernomas tend to irritate the brain tissue around them, which can cause epilepsy. The seizures from cavernomas typically start in younger people. As multiple medications didn’t help and neither did an implanted vagal nerve stimulator, Dr. Conner agreed to perform the surgery to remove the cavernoma. The surgery had some risk as it was close to major blood vessels in Judy’s brain and her speech function was also at risk, but she was so debilitated from her seizures and the side effects of medications that surgery was the next appropriate course of action. After living with epilepsy since she was 19, Judy had a craniotomy for resection of cavernoma and partial temporal lobectomy in October 2020.

Dr. Conner performed an electrocorticography (eCOG) guided craniotomy to resect the lesion. The eCOG helps “guide” the resection of the area of the brain by monitoring for abnormal seizure activity directly on the brain. The electrodes were placed on Judy’s brain before and after the removal of the cavernoma during the surgery, and the neurology team could see the abnormal seizure activity in her brain dissipate after the removal of the cavernoma and some part of the brain surrounding it. The longer the tumors cause seizures in the brain, the more common it is for the surrounding brain tissue to become damaged and also cause seizures.

Judy’s surgery was a huge success, but the recovery was long. The seizures had gone but Judy had problems with her speech, performing basic tasks and walking. Prior to the surgery, Judy was warned that the recovery would be long and difficult and it was. After some timer in a rehabilitation facility, Judy went home and began the road to recovery.

“The surgery did amazing things for mom, but we didn’t realize how much of a struggle it would be for the first year,” said Judy’s daughter Robyn. “The recovery took a long time and for about six months, mom couldn’t do much more than sleep and watch television.”

“Judy’s recovery was long, mostly due to her age,” explained Dr. Conner. “It takes much longer for older patients to recover from a massive surgery like she underwent. Her speech was affected because she had the cavernoma for many years, and some of the surrounding brain tissue next to critical speech areas was damaged and had to be removed.”

It’s been over two years since Judy had the surgery to remove the cavernoma. Now, at 70 years old, her life is incredibly different.

“I feel fantastic,” Judy said. “I am off all of the medication and I have so much energy. I am no longer tired and I have no seizures. I can do all of the things I have always wanted to do.”

Judy’s partner, John, has been with her every step of the way and is amazed at Judy’s energy levels and vitality. Judy has been using some of the energy to mow the lawns and tend to some gardening – things she was previously too exhausted to do.

“The recovery period was harder than I expected, but worth it,” said Judy. “Life for me now is zippy-doo and I feel like I’m 26. I am so thankful to Dr. Conner – he’s a marvelous man.”

In Oklahoma, eCOG is only able to be performed at OU Health. Dr. Conner explains that epilepsy patients may be candidates for surgical consideration and surgical evaluation by OU Health epilepsy neurologists when they continue to have debilitating seizures despite using at least two well-tolerated anti-seizure medications.

“Once that evaluation is completed, the case is then discussed at our monthly Epilepsy Surgery Conference where, as a group, we decide what surgical options may be available to patients. Many patients are able to control their seizures with the right medication(s), but not all.”