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'Truly a night-and-day change in my life'

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The goal for every epilepsy patient: to make them seizure-free and able to lead a normal life.

So says Dr. Gregory Cascino, a neurologist at the Mayo Clinic who treated Sarah Clark, a Rochester woman who was diagnosed with epilepsy in 2001.

Making patients seizure-free, Cascino said, usually can be accomplished through medication. However, patients who are not able to control seizures through medication alone also have to consider the option of having surgery.

The most common type of epilepsy surgery is resective surgery, in which the surgeon removes the area of the brain causing the seizures. This can happen if the seizure activity occurs in a small and well-defined area of the brain, according to the Epilepsy Foundation. The goal of the surgery is to stop the seizures altogether.

Although epilepsy surgery can greatly improve a patient's quality of life, the decision by the patient's neurologist and neurosurgeon, about whether or not the patient is a candidate for the surgery, is not an easy task. The patient has to meet certain criteria, including having seizures that have an adverse effect on their quality of life and not being able to control the seizures through medication alone.

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To see if one meets the criteria, they must undergo a careful evaluation. According to Cascino, this includes a diagnostic evaluation, which begins with a neurologic history examination and a number of specialized studies, including an electroencephalogram, which is a test to detect electrical activity abnormalities in the brain and an MRI of the head.

"At the end of the evaluation, we come to a consensus as to what treatment options are appropriate for the patients -- the goals being no seizures, no side effects and no lifestyle limitations," Cascino said.

'What if I'm not me?'

Clark said while she knew surgery was the best option to control her epilepsy, she still had concerns about her brain being operated on, not really knowing how having tissue removed from her brain would affect how it would function and how it would affect her way of life.

"I'm a pharmacist; I'm intelligent; I have a high-performing job. What is my life going to be like if I can't be a pharmacist?" Clark said. "That was my biggest concern -- was what would I be like -- what if I'm not me."

While Clark did go on to have a successful surgery, in 2005, her concerns about the procedure were not uncommon, Cascino said. Many patients who are about to undergo surgery are worried they will not be seizure-free after the operation and what side effects, psychological and physical, they could endure after the surgery. These effects include the function of the brain, including motor function, speech, language and memory. Cascino said how the surgery will affect the brain depends on the individual patient and the area of the brain that is being operated on.

Cascino said although the surgery can lead to a better quality of life, the surgery is not 100 percent effective in all patients. However, the majority of the patients who are not seizure-free after the surgery most likely will have a reduction in seizure activity.

"So even in the most favorable groups, we say 60 to 70 percent of being seizure-free, meaning that a third of the patients will continue to have seizures," said Cascino. "That's an important, adverse effect that the patient has to consider."

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Other side-effects, risks

Common adverse effects of the surgery are headaches, pain, post-operative discomfort, needing to continue with medication and a possible noticeable scar on the forehead. However, a rare number of patients, roughly 1 percent to 2 percent, who have undergone the surgery also experience stroke, brain hemorrhage or infection.

According to Dr. Richard Marsh, a neurosurgeon at Mayo Clinic, in some cases the surgeon is not able to extract the part of the brain where the seizures are occurring without damaging vital areas of the brain. Although surgeons often will be aware of this before the surgery, they are not able to know specifically before conducting tests on the brain during surgery to further localize where the seizures are occurring.

"Then we're stuck at that point. We really don't have an operation to take the tissue out," said Marsh.

When it is discovered that removal of the brain tissue affected is not an option, there still are several things that can be done to reduce seizure activity. One of these options is to implant a vagus nerve stimulator under the chest, similar to a pacemaker. Wires from the stimulator are then attached to the vagus nerve in the neck. This device sends bursts of electrical energy through the vagus nerve and into the brain.

According to the Mayo Clinic website, those who have the vagus nerve stimulator implanted may have their seizures reduced by 20 to 40 percent.

After the patient has surgery, they are re-evaluated immediately after the surgery as well as three months and a year later to see how they are progressing and if they are in fact seizure-free.

"And then hopefully we've achieved our goal where we can start talking about some of the positive developments in their lifestyle," Cascino said. "They can talk about employment, education, living independently, operating a motor vehicle, obtaining a drivers license. But this is done very gradually, but these are hopeful developments that they have."

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Few candidates for surgery

Cascino said although epilepsy affects more than 2 million people in the United States alone, with one-third not being able to control their seizures, the number of epilepsy surgeries across the United States is low, with only 60 to 120 epilepsy surgeries happening at the Mayo Clinic in Rochester every year.

"Even nationwide, despite the fact that we have a very large number of patients in the United States with intractable epilepsy, the number of operations given in the United States each year is in the hundreds," said Cascino. "This is probably because a lot of patients are not surgical candidates or they're not being referred to an epilepsy center or they wish to consider other treatment options as well."

While only a few epilepsy patients are eligible for surgery, Cascino said those whose seizures cannot be controlled with medication should have a talk with their neurologist to see if surgery is an option. Although the average duration of adults who are operated on used to wait two or three decades to have the surgery, Cascino said neurologists usually can recognize these individuals who are likely to have drug-resistant epilepsy and should be considered for surgery within two years of having seizures.

"It's probably never too early to do epilepsy surgery, probably only too late," Cascino said. "All the things that people take for granted you may not be able to take advantage of if you have poorly controlled seizures."

Marsh said those who suffer from drug-resistant surgery also are never too young to be considered for the surgery, and it often is recommended for children whose seizures cannot be controlled.

"If they have a problems that can be successfully and safely treated with surgery, they are better off getting that earlier than later," said Marsh. "As the brain develops, if it's constantly exposed to seizures, other problems could develop."

In 2005, Clark had a left temporal hippocampectomy, a form of epilepsy surgery, and now is seizure-free without the aid of medication. A neurology clinical pharmacist at the Mayo Clinic, she is able to successfully perform her job and now is the mother of three kids. Seizure-free for over 10 years, she now considers her life "normal."

"Life has been remarkable. It's truly, truly a night-and-day change in my life," said Clark. "I think with my story of epilepsy, I think I'm very fortunate that I had the right, if you will, type of seizures to allow this procedure to happen. If someone were in my shoes and debating this, it had such a profound, positive impact on my life. There's zero problems at all, and it's been a fabulous outcome. It's been life-changing from that aspect."

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