Choosing Epilepsy Surgery: Undergoing a Temporal Lobectomy by Ann Carletta Editor’s Notes by Robert S. Fisher, M.D., Ph.D., Editor-in-Chief of epilepsy.com Edited by Robin Owen, Managing Editor My New Year’s resolutions for 2005 were written in a beautiful card with a picture of Van Gogh’s Starry Night. The resolution addressing health read, “Make a conscious choice to respect my body through better nutrition and regular exercise. Do all necessary neurological testing.” Little did I know that fifty weeks later, I would be walking into NYU medical center for neurosurgery. This is the story of my passage through realization, evaluation, surgery and recovery. Why Consider Surgery? Looking back, I can see that my seizures had a much greater impact on my life than I had ever realized. But, 2005 was the turning point, when seizures disrupted my career. When I had previously worked in advertising, I did have seizures in the company of other people. However, I was doing very well in sales and everything else is irrelevant if you are bringing in money for the company. I was fortunate enough to usually have auras—warning signs of an oncoming seizure. Most of the time people were not aware I was having a seizure, unless I was required to speak. Seizures caused me to lose my ability to speak, but I remained cognizant of my surroundings. I knew what was happening and once the seizure had passed, I could repeat anything that had been said and continue with what I was doing—although a nap was much preferred. When I turned to an acting career, seizures became a major problem. Although the seizures may not have been worse, the impact on my work was far more disruptive. It was because of acting that I recognized that my seizures could be triggered by light. Unfortunately, I did not make this connection until I had a seizure on stage. Prior to the performance beginning, I was sitting in a rocking chair on stage looking up at another actor. He was blocking the light. As he moved to the side, the light shone directly into my eyes and I felt a jolt. 14 Epilepsy: Insights & Strategies March 2009 A bad feeling in my stomach told me that a seizure was inevitable—it was a typical precursor of what was to come. The play was underway; I was still sitting on stage when the seizure began. My leg stiffened and caused the chair to start rocking more quickly and at a deeper angle than anyone would normally rock—I was just hoping not to roll over backwards. My first thought was that the other actors would think I was rocking the chair wildly to get the audience’s attention. Finally, my muscles relaxed and the chair slowed to a normal speed. Now, it was time for my lines. I knew what I had to do, but I was unable to speak. Getting out of the rocker, I walked the path my character was supposed to, paused where I was to speak, said nothing and went back to sit in the rocker. But, that was not the worst part. When the play was over, I needed the other actors to know that I had not forgotten my lines. They were initially empathetic, but once I explained that I had had a seizure, their empathy turned to anger. Although it was never voiced, I believe the consensus was, “how dare someone with epilepsy audition to be in our play?” I know and accept the fact that I had a seizure and that there was nothing I could do. However, I chose never to audition for another play. Prior to 2005, I had never kept track of my seizures and if you had asked me, I would have said I had a few each year. My medical records indicate that I had a febrile seizure at six-months old and that seemed to be the end of it. At age eight, I suffered a head injury. For the next year I had nocturnal seizures, which were never noticed by anyone else. When I finally lost consciousness in front of my parents, it was off to the doctor. Originally, I was put on Choosing Epilepsy Surgery Carletta phenobarbital, a drug with a very negative impact on performance at school. My nocturnal seizures seemed to stop, but what I now recognize as auras and complex partial seizures started. The medication never controlled the seizures. When I switched to Tegretol (carbamazepine), fifteen years later, the switch in medication caused new developments. I regained the clarity I had lost being on phenobarbital, but now seizures caused me to be unable to speak while having them. Tegretol didn’t stop the seizures, so Neurontin (gabapentin) was added to the mix. The types of seizures stayed the same, but I gained fifty pounds! After ten years on combinations of those medicines, I switched to Lamictal (lamotrigine). While the Lamictal did not successfully control my seizures, the switch to it was accompanied by a much needed sixty-five pound weight loss. The seizures continued. I now began to notice that I was slowing down intellectually. I had never been aggressive about seeking medical treatment, but this new development was antagonizing to me. It occurred to me that there might possibly have been some advancements in the field, so I sought the advice of a new epileptologist. He suggested I consider surgery—a treatment that I had declined to consider ten years earlier. Now I felt it was something I must consider. My seizures were more frequent and severe; I was on my fourth medication, none of which had completely controlled the seizures; and most important, I felt that my intelligence was declining. It was time to investigate neurosurgery. Slowing down intellectually was something I could not tolerate. My greatest fear of neurosurgery was fear of the unknown. The image in my mind was that of Jack Nicholson’s character, Randle McMurphy, in One Flew Over the Cuckoo’s Nest. Ignorance, in this case, was anything but bliss. Doing My Surgery Homework Research began on where to go for treatment. I decided not to continue with the epileptologist who suggested surgery because he was not affiliated with a level 4 comprehensive epilepsy center. The Internet provided access to information that was extremely helpful. It allowed me to find medical centers that specialized in epilepsy. The National Association of Epilepsy Centers (http://www.naec-epilepsy. org/) provides ratings for centers, level 4 being the highest. Since I was considering surgery, I limited my research to those medical centers. Although I was fortunate enough to have several centers within driving distance, I would not have limited my choice of doctor by distance from my home. My search was for an epileptologist and a neurosurgeon who had specifically done the surgery I needed, successfully, and many, many, many times. My search ended at NYU Medical Center after meeting Dr. Devinsky, an epileptologist and Dr. Doyle, a neurosurgeon who specializes in epilepsy. Editor’s Note: Dr. Devinsky is on the board of epilepsy.com and its parent, the Epilepsy Therapy Project. See his video discussions of epilepsy surgery by going to epilepsy.com, then clicking on the video camera icon in the left column and scrolling down to the epilepsy surgery topics. The site also has numerous other resources about epilepsy surgery, including a video series of interviews with people who have had epilepsy surgery. Step one in preparing for surgery is finding doctors with whom you are comfortable. People handle stressful situations differently. Make sure that you and your medical team are a match. I could probably win an award for the patient who asks the most questions. I needed a doctor who was going to listen and answer all my questions—Dr. Doyle answered them all, many times over. I am a numbers person. The numbers I wanted were: How many surgeries of the type I would be having had the surgeon performed? What was his/her success rate? What are the risks and the likelihood of complications, success, unwanted effects? While you can get some of this information on the Web, be sure to get specific statistics from the doctor with whom you are meeting. Pre-Surgical Testing March 2009 Epilepsy: Insights & Strategies 15 Carletta Choosing Epilepsy Surgery While it may be difficult to make the decision to have surgery, you first have to qualify, and your qualifying doesn’t mean you have to go through with it. So start with the basics. The tests and procedures that can be involved are the following: EEG, aEEG, VEEG, MRI, MEG, PET, SPECT, neuropsychological testing, Wada, iEEG, craniotomy, and partial temporal lobectomy. Believe it or not, most of them are painless. Editor’s Note: There is some pain while recovering from surgical procedures, but you receive strong pain medicines for it, and it usually is not terribly uncomfortable. Do your own research on any tests that are recommended. EEG: Electroencephalogram. It is painless. It is simply electrode leads attached to your head with a glue-like substance. The wires are connected to a computer and it gives a read-out of your brain’s electrical activity. Irregular activity can indicate epilepsy. This is done in the doctor’s office and takes about an hour. aEEG: Ambulatory EEG. It is the same as above, however, you are sent home wearing the electrodes. Make sure you bring a hat or scarf to wear after they are “installed.” My test was done a few blocks from the United Nations and I was fearful someone would think I was a suicide bomber. There’s no physical pain, but you do look pretty silly—think about scheduling it on Halloween. VEEG: Another EEG, with a V for video. It could be an AV-EEG because sound is being taped as well. This test is done in the hospital with people monitoring you round the clock. You have a button to push to notify the staff when you think you are going to have a seizure. The wires on the EEG are long enough to let you get up, pace the room, use the bathroom, etc. Once again, no pain is involved. I was taken off medication, as is often the case, to increase seizure activity. iEEG: Intracranial EEG. Sometimes the EEG electrodes pasted to the scalp do not clearly identify the region of seizure origin in the brain. Then doctors may recommend placing wires under the skull directly on top of the brain (grids or strip electrodes), or into the brain (depth electrodes). These are called intracranial, meaning “inside the skull.” This is a surgical procedure itself, with some risks, which you will talk about with your doctors. Not everyone having seizure surgery needs an iEEG. MRI: The MRI is another painless test, but many people have difficulty with it due to claustrophobia. You lie down on a flat board bed and your head is taped so it will not move when you are inside. There is very little room to move as the inner wall of the machine is very close to your face—my trick has been to close my eyes prior to going into the machine. I’ve heard there are facilities that have machines that cater to those who have claustrophobia or need more room in the machine and some places provide sedatives if needed. Many have CD players, so bring your favorite tunes—it can seem like a very long procedure. When the machine is turned on, it is very loud, so if you are not listening to music, use earplugs. They may or may not use a dye, which requires an injection. Find out before you go in. PET and SPECT: PET (positron emission tomography) and SPECT (single photon emission computed tomography) scans are brain imaging tests to show metabolism (PET) or blood flow (SPECT) to different parts of the brain. These tests can help to point to seizure areas in the brain. You receive an intravenous injection and a trace dose of radiation with the tests, but they are not painful or risky. Before seizure surgery, you might receive one or the other, both or neither, depending on your situation. 16 Epilepsy: Insights & Strategies March 2009 Choosing Epilepsy Surgery Carletta MEG: Magnetoencephalography. It is absolutely painless. It’s a rather large machine and your head slips up into it like the beauty shop hairdryers in the movies. It usually takes an hour or two. It shows locations of abnormalities in the brain. Neuropsychological tests: This is a series of tests that will range from simple to difficult. They are “specifically designed tasks used to measure a psychological function known to be linked to a particular brain structure or pathway.”-Wikipedia. One test has you put together puzzles, another asks you questions you may find in Trivial Pursuit. In another, you are read a story and quizzed afterwards to see what you remember. I have taken these many times over the years and have varied from <1% to 99.9% on different tests. Wada testing: This test sounds far worse than it is. “A test is done to determine which hemisphere (side of the brain) is dominant, or most responsible, for critical functions such as speech and memory. During this test, each hemisphere is alternately injected with a medication to “put it to sleep.” While one side is asleep, the awake side is tested for memory, speech and ability to understand speech.” Web MD. This test is done while you’re awake. You are hooked up to a fluid tube in the femoral artery in the groin area (because an artery is close to the surface there). The region is numbed with local anesthetic before putting the tube in place. The tube is then threaded up under X-ray guidance to the carotid artery in the neck. The tube will carry the anesthetic drug, sodium amobarbital, or some equivalent drug to your brain. With injection of X-ray dye, my body temperature grew very warm and I started to see flashes of colors, almost like fireworks. The doctor did not think my reaction was anything to be concerned about. Then the amobarbital was used to put one side of my brain to sleep for about ten minutes. When the left side of my brain was put to sleep, I could answer all the questions I was asked. When the right side of my brain was put to sleep, I lost my ability to speak. It was another confirmation that I had problems on the left side. After the procedure you spend the rest of the day in the hospital. Don’t go running out the door when you are discharged—you need to take it slowly after this test. Although the idea of this test was frightening to me, it was not a problem, and in the end I found it incredibly interesting. Tips on Medical Insurance Before doing the Wada test, I wanted to make sure that my insurance company was going to approve the neurosurgery. It is of the utmost importance that anything your insurance company or medical team tells you is backed up in writing. I was in a very fortunate position at this time with health insurance and it is one of the reasons I felt encouraged about having the surgery. When I initially considered having the surgery, I thought it would be sometime in August. It was ultimately delayed until mid-December—the paperwork never seemed to end. If you are rejected by your insurance company, challenge it. Keep writing and keep calling until you get the answers you need. The Internet has been a savior, as company executives’ names, phone numbers and addresses are available. I have gone to that level to get problems addressed. The old P.O. Box addresses of the insurance claims departments are usually irrelevant. Neurosurgery for epilepsy is not experimental or elective. I’m sure the medical professionals with whom you work can assist—just make sure you have followed the insurance company’s rules “to a tee,” and have written proof. If this surgery is for you and you don’t have adequate insurance, consider looking for employment at a company with a better health care plan and possibly disability. Even if you have to go that route, it may be worth it. The Surgery Decision and Procedures With my tests completed, the medical team met and confirmed that I had temporal lobe epilepsy and was a good candidate for surgery. Now, prepping for surgery was becoming a reality. Since I did not originally know if I would go through with surgery, I had chosen not to tell my family and friends I was considering it. Now it was a reality, and I didn’t know how to go about informing them. I decided to send out a group e-mail telling them about my decision and providing them with a list of FAQs. Of course, the question everyone wanted answered was “is the surgery risk worth it?” I said I would take the risk, but I couldn’t know in advance what the results of my choice would be. It was difficult—there is no doubt about it. The mathematical part of me made the decision this way. Doctors discussing epilepsy surgery often predict a March 2009 Epilepsy: Insights & Strategies 17 Carletta Choosing Epilepsy Surgery mortality rate of less than one in a thousand—the rate my doctor gave me was one in two hundred; a risk for stroke or a serious complication of one to two percent, and the chance to be seizure-free or nearly seizure-free at about two out of three. I went with the numbers. Surgery procedures will vary, I had a two-stage procedure, which involved two very different surgeries from my patient perspective. The first surgery was a craniotomy—a procedure for removing part of the skull in order to access the brain. Leads were installed for an intracranial EEG (iEEG). I then spent the next week undergoing twenty-four hour observation. Once again I was taken off medication, to increase the likelihood of having seizures while the iEEG was installed. I obliged—there was enough information collected to confirm which portion of the brain should be resected (removed). The second surgery—the lobectomy—was a very different experience for me. The lobectomy was extremely painful. Editor’s Note: The amount of pain experienced after brain surgery varies greatly among different people and circumstances of the operation. people. I became concerned about being hit in the head and didn’t want to be near people for a considerable period of time. The hardest part of recovery for me was getting back up to speed verbally. It was difficult to get the words I wanted to say to come out. Often, different words than the ones I wanted came out, so I avoided interacting with other people. Normally, I am quite vocal, opinionated and quick-witted. When I couldn’t be that person, I wanted to be alone. Fortunately for me, that has passed, but it took a long time. As wonderful as it is to not have seizures, just as amazing is the benefit of reduced medication. With my last reduction of medication, my reading difficulties have vanished and my memory seems to be better than my pre-surgery days. I am expecting another reduction in medication soon and am anxious to see if the changes continue. Although I waited ten years from the first time surgery was suggested until I had it, I can’t regret waiting. I don’t know what the results of surgery ten years prior would have been. So it’s a question I can never answer. December 14, 2005 was my last unprovoked seizure. That is 1,151 days and counting. I am thankful that I was able to undergo this process and grateful to the people who have changed my life for the better, Dr. Doyle, Dr. Devinsky, Alyson Silverberg, NP, and Ed Rivera to name a few. I don’t know where I would be today if I weren’t seizure free. Ann Carletta had seizures for thirty-six years before deciding to undergo surgery. She has never looked back and is grateful to be living seizure free since 2005. Although I am needle-phobic, I took every pain injection they would give me. If they don’t offer pain medication, ask. Ultimately, my recovery went well and I was sent home three days later. Recovery Recovery seemed easy at times and difficult at others. The first time I went out was on the way home from the hospital. I was starving and asked my Dad to stop for food. He pulled up in front of Whole Foods and I went in and shopped for food with my bandaged head. I spent the next week in bed or on the couch, sleeping most of the time. I live alone, but was able to manage everything on my own. New Year’s Eve was two weeks after surgery. I had made plans to go out, but cancelled. The desire to do things was there, but the stamina was not. My first big trip was walking to my mailbox and it was exhausting. I started doing things gradually, like going out to lunch, then napping, heading to the store, and then napping. About a month afterwards, I went out on my first audition. It was exhausting and I was uncomfortable interacting so closely with other 18 Epilepsy: Insights & Strategies March 2009 From the Editor of Epilepsy.com Considerations before epilepsy surgery Everyone will have individual motivations, concerns and fears before undertaking epilepsy surgery. It is a difficult and potentially life-changing decision. Table 1 lists some of the questions that you may have to answer before making the decision to have epilepsy surgery. These points will not apply to everyone and they will not cover all individual concerns, but the list may be a starting point to help people who are thinking about epilepsy surgery to formulate their own lists of priorities and questions. And remember, surgery to treat epilepsy is elective, not required. Even if you are a “good candidate,” that does not mean that you have to have it. Each person has a choice here. Make it an informed and thoughtful one. Choosing Epilepsy Surgery Carletta Table 1: Questions to consider before having epilepsy surgery Are the seizures bad enough to cause injury or substantially lower the quality of your life? If not, the risks and stresses of surgery may not be justified. If yes, maybe so. Have you tried simpler treatments? Do you and your doctor really think that medicines have failed? Can you tolerate the long and drawn out pre-surgical testing process? Are you willing to take a risk, about one in fifty (see the epilepsy.com videos for details) of something going wrong with the surgery? Do you have a good support system to help you get through it? Can you take time off from work, school, and family responsibilities to have the work-up and recover from surgery? It adds up to a couple of months total in most cases. Have you picked a neurologist and neurosurgeon that you trust? Will your insurance cover the cost, or at least most of it? Are you willing to face disappointment, if the work-up shows that you are not a candidate for surgery? Do you and your doctor have a back-up plan? Do you have insights in the following areas? We are looking for people who write or speak to an issue such as: • Coping with a new diagnosis of epilepsy • How to navigate the education bureaucracy for special needs children • What do people want in an antiepileptic medication? • How to handle epilepsy in the workplace • What can be done when you can’t afford your medicines? • How to remember to take medicines? • When is it safe to drive and when not? • Mood changes linked to seizures • Postictal psychosis (loss of touch with reality after a seizure) • Can a seizure lead to aggression? • Seizure-assist pets • The tragedy of SUDEP: sudden unexplained death in epilepsy • Misdiagnosis of epilepsy: a patient’s perspective • Thoughts on having children when you have epilepsy • How to find information and resources about epilepsy Contact Robin Owen, Managing Editor robin@epilepsytherapyproject.org. March 2009 Epilepsy: Insights & Strategies 19