Video-EEG Monitoring: In Preparation for Possible Epilepsy Surgery by Stuart Ross McCallum Editor’s Notes by Robert S. Fisher, M.D., Ph.D., Editor-in-Chief of epilepsy.com Edited by Robin Owen, Managing Editor To establish whether a person will make a suitable candidate for epilepsy surgery, many tests need to be conducted. The focus of this article is on one of the most grueling of all these tests—video-EEG monitoring. The points covered are: • What to expect, • How you can prepare yourself before monitoring, and • Coping strategies to enhance quality of life for the individual during his/her hospital stay. Editor’s Note: Why is the Test Conducted? Video-EEG monitoring is done in an epilepsy monitoring unit, sometimes abbreviated as the EMU. Monitoring can be done for several purposes: 1. To see if a person has epilepsy or one of the many medical or psychological conditions imitating epilepsy; 2. To see how much seizure activity is present and whether it is enough to explain physical problems such as uncontrolled movements or confusion; 3. To develop an individual’s complete epilepsy characterization to establish suitability for epilepsy surgery. Editor’s Note: Why is the duration of an EMU stay so variable? The main reason is the varying frequency of seizures between individuals. Some people have a few seizures a day, in which case, several can quickly be recorded. Other people might go more than a week without a seizure. In addition, recording half-a-dozen seizures or more may be needed to generate confidence that they all come from the same place in the brain. It is necessary to record all brain activities before and during a seizure, and to capture at least two seizures on video to enable your neurologists to precisely pinpoint the area of the brain from which your seizures are originating. How Long it Will Take and How to Prepare Yourself The length of an individual’s stay in the hospital while being monitored varies considerably, from one day to as much as two weeks. With that in mind, there are some things you can do to equip yourself for a potentially long stay. To alleviate boredom, a visit to the library for a selection of lighthearted, interesting books is helpful. Music is a wonderful form of escapism, listening to your favorite songs improves your state of mind and helps pass the long hours. Prepare to indulge in any activity or hobby that you enjoy doing, (e.g., crosswords, Sudoku, needlepoint, etc.) provided that it can be done while sitting. Simply because you are being monitored does not necessarily mean you are ill. Taking your March 2009 Epilepsy: Insights & Strategies 11 McCallum Video-EEG Monitoring own comfortable clothing (with buttons on the front, so that you don’t have to pull clothing over the wires on your head) will make you feel more like yourself and less like a patient. If you are a smoker, cutting down or quitting before your admission day is highly recommended; however, nicotine patches are available to help ease the cravings. Editor’s Note: Many hospitals have “No Smoking” policies, in a deliberate attempt to jump-start quitting cigarettes. This admittedly adds stress to an EMU admission, but it often works. Nicotine patches or gum can help. In rare circumstances, orders can be written to allow the patient to disconnect from recording and go outside (accompanied) for smoking breaks. the outside world. The monitoring camera, which provides twenty-four-hour video surveillance, being observed by qualified staff, is located a short distance from your room. Editor’s Note: People naturally are nervous and shy at the idea of continuously being recorded. But, it quickly becomes natural. First, video is not recorded in the bathroom or wherever else you request privacy, but EEG (brainwave activity) continues to be recorded even when video is turned off. Second, the majority of the recording is usually discarded at the end of the hospital stay—only parts related to seizures or seizure-like events are archived. Working on laptop computers or using them for games or movies helps to pass the time, but sometimes laptops generate electrical interference in the EEG. The EEG technologists will let you know if this is a problem. Electrical noise from laptops can be reduced by using battery power and later recharging, far from the EEG machine. EEG technicians will visit to apply electrodes to your scalp using special, somewhat itchy glue—and to stop the electrodes from moving, they are protected in gauze which is securely held in place with bandages. The electrodes are then connected to the video-EEG recorder; the cable from the electrodes is exceptionally long which enables you to visit a bathroom, positioned close by. Showering has to be done with a waterproof head-wrap, and you must be unplugged from monitoring. In fact, for electrical safety, doctors say that you also should be unplugged when brushing your teeth or washing your hands. Monitoring begins Anticonvulsant medications are decreased or stopped altogether, unless you already are having frequent seizures. Editor’s Note: Do NOT stop your seizure medicines before being admitted to an EMU unless your doctor has specifically told you to do so. If you do, you could have severe seizures prior to admission. What to Expect Monitoring day As with all hospital admissions there will be an abundance of necessary formalities to undergo. Once completed, you will be escorted to your room. Inside is a reclining arm chair, which at night may serve as your bed, although most EMU rooms have separate beds and chairs. Some EMUs allow another person to stay overnight in a cot-bed. A television and a telephone become your main contacts with 12 Epilepsy: Insights & Strategies March 2009 If seizures do not occur, you may be kept awake to cause sleep deprivation or be exposed to light flashes. The purpose of this is to hopefully induce a seizure, shortening the time you must undergo monitoring. Loneliness, boredom and feelings of isolation become your worst enemies. Having a support network (if possible) from the outside world will improve your mindset. Regular visits from family and friends will help pass the time and give you something else to focus on, which is a welcome relief from being consumed with the monitoring experience. Being able to freely talk on the telephone to family and friends is Video-EEG Monitoring McCallum a great comfort, and the feeling of isolation lessens. Try to make arrangements for frequent visits and phone calls before being hospitalized. Editor’s Note: Every hospital has visiting policies, typically allowing visitors, one or two at a time, between noon and 8:00 pm (policies vary). Exceptions usually can be made for monitored patients, provided that they are in a private room. A family member usually is welcome to stay. The family can be helpful in identifying when a patient is having a typical seizure. But admission does not require that a family member be present. Ceretec, during a seizure, which provides additional, improved information on the seizure’s origin. Video-EEG monitoring takes a toll, and when alone there will be times when you become irritated and feel like simply, getting dressed and going home. During these periods it is extremely important to be positive, and remind yourself of the reasons why you are being monitored. This is just one small part of a potentially life-changing event—life without the disruption of epilepsy and the constant fear of a seizure striking, anytime, anywhere! The positives can far outweigh the negatives; it is essential to explore every opportunity available for a chance at life without seizures! Hopefully, your monitoring stay is successful, enabling the recordings to be thoroughly analyzed, and providing enough information to make a well-informed decision regarding epilepsy surgery. Editor’s Note: About twenty percent of people go through an EMU admission with no events captured for analysis. The decision on what to do then has to be made from the past history. However, even if you do not have a seizure, the EEG recording may detect “spikes,” which are electrical surges in the brain. Spikes are too brief to be felt by the patient, but can still give useful information about your epilepsy to your medical team. Since you will be sitting or lying down most of the time, understand that the longer you undergo videoEEG monitoring, the more likely you will become bloated and uncomfortable. Editor’s Note: One of the potential dangers of video-EEG monitoring, in addition to hurting yourself from a seizure, is lying in bed so much that you get a blood clot in the leg, called DVT or deep vein thrombosis. The risk of this can be minimized by moving your legs a lot in bed, getting out of bed several times per day, and wearing compression stockings. Drinking plenty of water and minimizing your intake of solids greatly relieves this problem. You will find coping during the days much easier than the evenings, as you will be interacting with many health care professionals conducting a variety of tests, mostly focused on your memory. The EEG technicians visit daily to make sure all electrodes are still held securely in place, and to change your bandages—this is an enjoyable experience, allowing you to carefully give your head a scratch! Being on reduced anticonvulsants or none at all can be unusual and frightening. But, it also may be the only opportunity you have had in a long time to see what it feels like to be on less or no seizure medicine. Not knowing the severity of the next seizure you may experience creates enormous anxiety. It is vital to remember that your safety is paramount to everyone involved in conducting the tests; you are not as compromised as you may feel. You probably will be on an intravenous line at all times, allowing a rapid introduction of medication to end a seizure. Depending upon your particular form of epilepsy, you may be injected with a radioactive solution, named When monitoring is complete, EEG technicians will remove your electrodes. No longer attached to the high-tech monitoring equipment—this may be your first chance at a shower (versus a sponge bath) since you arrived. Although further tests are necessary before epilepsy surgery, you have survived one of the most grueling by far. Congratulations! After a successful temporal lobectomy, Stuart Ross McCallum wrote an autobiography about his experiences with epilepsy, and is now working as a freelance journalist. His book is titled, “Beyond My Control, One Man’s Struggle with Epilepsy, Seizure Surgery & Beyond.” March 2009 Epilepsy: Insights & Strategies 13