EPILEPSY PATIENT STORIES
Considering Surgery: Seizing Control in the Battle Against Epilepsy
Surviving the teenage years can be a challenge for anyone, but getting through the terrible teens while suffering from epilepsy can be overwhelming. I'd be walking down the street or sitting in class, and next thing you know, I'm up in the back of an ambulance, recalls Daniel Sizemore. Sometimes he'd black out four times a day.
Nineteen-year-old Daniel suffered from epilepsy for seven years of his young life. Epilepsy is a chronic condition caused by an electrical disturbance in the brain, resulting in seizures that affect awareness, movement and sensation. A seemingly endless parade of doctors and drugs tried to put Daniel's seizures in check each new medication offering a glimmer of hope that his seizures could be controlled. Some drugs lessened the severity of the attack, many had adverse side effects, but nothing eliminated the seizures altogether. Daniel was unable to drive or hold down a job, and school was difficult.
After learning of their successful approach to epilepsy treatment, the Sizemores turned to the Epilepsy Center at the Wallace-Kettering Neuroscience Institute (WKNI). Here, a dedicated team of people and technology work in concert to provide an array of epilepsy care. The Epilepsy Center has a well-established infrastructure that includes an epileptologist, neurosurgeons, neurologists, and other specialists. This comprehensive team approach is a rare capability that only the most advanced neuroscience centers can provide.
Initially Daniel hoped his seizures could be controlled with a vagal nerve stimulator, an implanted device that helps reduce the number of seizures in some patients. But Daniel's initial evaluation by WKNI's Dr. Robert Simkins, D.O., revealed something remarkable: The first thing that came to mind, Simkins recalls, was that this kid had never been looked at with the idea that he could be cured.
While treatments such as medications and the vagal nerve stimulator can be extremely effective, they are used exclusively for symptom control, whereas successful surgery can essentially be a cure for epilepsy. After a series of presurgical evaluations, WKNI's epilepsy team determined that Daniel was an excellent candidate for surgical resection. For this procedure, the area of the brain where the seizure arises, or the focal point, is surgically removed. In Daniel's case it meant removing part of his right temporal lobe.
Approximately 70 percent of patients with epilepsy can have their seizures controlled with medication. However, explains Simkins, After a patient fails the first couple of medicines, you shouldn't continue trying medications. Patients whose seizures aren't controlled within one to two years should be considered for alternative therapies. One of the first and most important considerations should be whether the patient is a candidate for resective surgery.
In Daniel's case, spending years trying to find a medical solution was fruitless. We have so many medications now, explains Simkins, that the idea of going through every medication before you consider surgery you've wasted a working life. These people will never work, will never have a job, and you're not doing them any favors. We [at WKNI] like to get people early to determine what's causing the seizures and identify all treatment options. Simkins feels it is especially crucial to properly diagnose young people with epilepsy, particularly those who may be candidates for curative treatment. Problems associated with the condition, such as lack of socialization and dependency on others, can significantly alter a young person's quality of life and establish negative lifestyle patterns that can be difficult to alter.
The experts at the Epilepsy Center spend nearly as much time determining whether someone has epilepsy as they do taking care of epilepsy. Sometimes seizures are the result of factors other than epilepsy, such as psychological trauma or psychogenic issues. Simkins notes that at least 30 percent of his patients think they have epilepsy, when actually their seizures are caused by other factors.
Making the correct diagnosis, therefore, is extremely critical. WKNI's Epilepsy Center uses a host of diagnostic tools to make the correct assessment, such as long-term monitoring of EEG and continuous EEG video monitoring, which provide direct evidence of a patient's symptoms. Advanced neuroimaging capabilities, such as high resolution MRI, are vital to detecting certain types of seizures and their focal areas. In addition, PET scans and single photon emission computed tomography (SPECT) scans are used. In most cases, doctors can determine who will be a good candidate for surgery without resorting to invasive procedures.
If an MRI scan indicates the seizure arises from the region of the cortex that shows a structural abnormality, doctors can be confident that surgical resection should not damage important functional areas of the brain. If the seizure emanates from the temporal lobe, surgeons can use bilateral sphenoid electrodes to help determine the seizure's exact location. If the seizure arises from areas scattered throughout the brain, WKNI surgeons can use intracranial cortical mapping, placing electrodes on the brain itself to directly record deep brain activity and pinpoint abnormal electrical activity.
If a patient is not a good candidate for surgical resection, alternatives for seizure control include the vagal nerve stimulator. The stimulator is actually a thin, round pulse generator, or battery, about the size of a pocket watch. The device is usually implanted under the skin on the upper left side of the chest. A tube containing electrodes connects it to the vagus nerve on the left side of the neck. The stimulator delivers an electrical stimulation to the brain, reducing the number and sometimes the length of seizures. About one-third of patients who use the vagal nerve stimulator experience a major improvement in seizure control; one-third experience some improvement; and one-third continue to have seizures.
In Daniel's case it wasn't that difficult to discover his type of epilepsy, and the location of his focal point made surgery a definite consideration. It was a matter of getting the appropriate MRI scan and just doing some monitoring, and it was very clear that he was an A-1 candidate for an operation. Daniel's type of epilepsy represents the most common focal lesion in patients with seizures arising from the temporal lobe. Had Daniel's initial care included these tests, explains Simkins, they would have known from the beginning this was a hippocampus sclerosis patient and he was probably going to fail medication. Lots of people in medicine today think of surgical resection as the last thing, but it should be considered right from the start. Ninety percent of patients who undergo this surgery are significantly improved, and 70 to 80 percent are rendered free of seizures that impair consciousness.
Now nearly two years since his surgery, Daniel continues to be 100 percent seizure-free. With the seizures that once ruled his life eliminated, Daniel's quality of life has skyrocketed. He graduated from high school, got his driver's licence, has a job earning a good wage, and is planning to move out on his own. I can work and earn my own money now instead of depending on disability, he says with a smile. Before, if I'd wanted to live on my own, it would not have been safe. The main thing that kept me down was I couldn't work and couldn't earn money.
About 20 to 30 percent of the estimated 2.5 million epilepsy patients in the United State are unable to control their seizures with medication a number that grows by thousands each year. Yet annually only about 1,500 surgical resections are performed in the nation. To Simkins this clearly indicates surgical treatment options are not being considered often enough. He believes surgical resection should be considered early on in a patient's treatment plan particularly when seizures cannot be medically controlled and they are seriously affecting the patient's quality of life.
Treating patients with all the available tools and considering all treatment options are primary goals of WKNI's Epilepsy Center. In Daniel Sizemore's case, after living seven years through multiple ineffective drug treatments, WKNI offered him a final cure that dramatically altered his quality of life, giving him a newfound freedom and confidence the likes of which he had never before known.
For more information on epilepsy and treatment for this condition, visit the National Epilepsy Foundation at www.epilepsyfoundation.org.