Blog #89: Surgical Removal of Seizure Foci in Your Brain to Cure Poorly Controlled Epilepsy is Safe!

            Only half of people with epilepsy are seizure-free even if they are taking the best anticonvulsant in the correct dosage for them. This “best” regimen is usually a trial and error exercise. Another 30 percent of patients find that anticonvulsant medications improve their seizure control but not completely. Another 20 percent do not respond at all to anticonvulsants and experience frequent seizures.

            Children and adults that undergo surgery to treat their poorly controlled epilepsy can find it to be life-changing. Anticonvulsant dosages and drug side-effects can diminish―the medications may even be stopped completely. Patients then feel confident to be alone at home and may even safely drive vehicles. What may surprise people is that brain surgery causes few or no observable side-effects and can lead to improved quality of life. IQ, too, is little, if at all, affected by surgery, and the surgery has been found to have less effect on IQ compared to those only treated with long-term medical therapy. Dan Hurley reviewed this topic in, “Surgery for Pediatric Epilepsy Found to Have Better Outcomes than Medication Management Alone” in Neurology Today, December 7, 2017, page 17-18.

            One patient told her personal story in Neurology Now, December 2017-January 2018, page 38. She developed convulsions at age 31. Anticonvulsant medications helped but she still averaged 3-4 seizures per month. Her job as a nursing assistant ended because of the danger her epilepsy posed working with her patients. MRI, EEG and neurological evaluations with further testing suggested her seizures originated in a part of her brain that epileptologists and epilepsy neurosurgeons felt confident that its removal could lessen her seizures or even make her seizure-free. Following her right temporal lobectomy she reported that she has been free of seizures for six years. She is still on medication but at a lower dose. She advocates for her treatment by speaking to patient groups considering surgery.

            If uncontrolled epilepsy is your experience you should definitely consider the surgical option. As scary as it sounds, this treatment has been time-tested over decades. The neurological community finds this life-changing option is under-utilized. Discuss this possible treatment with your neurologist. If testing shows that you would be a good candidate, you will probably wonder why it was not recommended before or why you hesitated for so long.

            Epilepsy centers that perform this surgery are available throughout the United States and the developed world. If your neurologist believes that you would be a candidate, ask for a referral.

Lance Fogan, M.D. is Clinical Professor of Neurology at the David Geffen School of Medicine at UCLA. “DINGS” is his first novel. It is a mother’s dramatic story that teaches epilepsy, now available in eBook, audiobook and soft-cover editions.

Blog #88: Epilepsy in Life and in Literature: Dostoevsky

          Fyodor Dostoevsky (1821-1881) is among the world’s greatest authors. He is especially famous for Crime and Punishment, The Idiot, and The Brothers Karamazov. The central character in The Idiot, Prince Myshkin was beleaguered by epilepsy as was one of the Karamazov brothers, Smerdyakov. So, too, was their creator, author Fyodor Dostoevsky.

            Dr. Howard Markel recently reviewed Fyodor Dostoevsky’s life with epilepsy on the PBS NEWS HOUR. His review is available on-line. ¹  Markel noted that Dostoevsky wrote he was grateful for his seizure disorder because of the “abnormal tension” the episodes created in his brain, which allowed him to experience “unbounded joy and rapture, ecstatic devotion and completest life.” At other times, the author regretted the disability because he thought it had wreaked havoc with his memory.

            Thoroughly familiar with epilepsy, Dostoevsky’s descriptions are spot on. For example, the fictional character Smerdyakov was said to, “…sometimes stop suddenly…and stand still for ten minutes, lost in thought. Studying his face one would have said that there was no thought in it…” (page 123). ² A classical description that defines a complex partial seizure with post-ictal confusion. Some of his seizures are followed by headaches, which is a known post-ictal phenomenon.

            Smerdyakov makes prior plans to kill his father, the loathsome buffoon, Fyodor Karamazov, whose life is driven by narcissistic greed and lust. Smerdyakov will then blame the murder on one of his seizures. But, Smerdyakov tells a brother of a forthcoming seizure to the hour that will occur on a particular day. He is suspected of feigning some of his seizures, i.e., they are pseudoseizures. And, indeed, he later admits (page 570) to a brother that he did feign that seizure and that he consciously did murder Fyodor. ²

            Neurologists’ experiences lead us to believe that one-third of seizures in well-documented epilepsy patients whose seizures have been EEG-verified, are psychogenic or pseudoseizures, i.e., they are not true seizures. In these situations the patient is seemingly in the midst of a seizure but the EEG remains normal. Additionally, the patient can be susceptible to voice communications during the “seizure.” These pseudoseizures can have psychological causes beyond the patients’ conscious control; these are termed “conversion-type” seizures. I describe this phenomenon in greater detail in previous blogs at LanceFogan.com: # 10, September 23, 2011: “Is It a True Epileptic Seizure or a Faked, Psychogenic Seizure with a Psychological Cause?” and Blog # 49 August 27, 2014: “Psychogenic ‘Fake’ Non-Epileptic Seizures.” 

            In The Idiot, Prince Myshkin described after-effects of his seizure―a description of the classical post-ictal state (page 52): “…after a long series of fits. I always used to fall into a…torpid condition…and lost my memory almost entirely…I had no logical power of thought…I remember my melancholy was intolerable; I felt inclined to cry…” ³

             My blog followers who have epilepsy will be able to identify with these fictional characters’ epilepsy. I encourage you to explore Dostoevsky’s writings. Although he created these works over one and a half centuries ago, all of us can relate to his characters’ personalities and motivations. He describes us humans and our natures as we are.     

1. Dr. Howard Markel. “For Dostoevsky, epilepsy was a matter of both life and literature.” PBS News Hour. Health: Nov 10, 2017 3:05 PM EST.

2. The Brothers Karamazov by Fyodor Dostoyevsky. A Signet Classic published by the New American Library: 1957.

3. The Idiot by Fyodor Dostoyevsky. Everyman’s Library #682 published 1914.

Lance Fogan, M.D. is Clinical Professor of Neurology at the David Geffen School of Medicine at UCLA. “DINGS” is his first novel. Presented as a medical mystery, it is a mother’s dramatic story that teaches epilepsy, now available in eBook, audiobook and soft cover editions.

Blog #87: A FAMILY DEALS WITH UNRECOGNIZED EPILEPSY (Excerpted from Dr. Lance Fogan’s novel, DINGS)

                       

                                                Chapter 21

“Hurry, Conner. We’ll be late!” I leaned against the railing downstairs. It was two days since his convulsion. Today was his first day back to school. I barely heard any sounds and murmurings from the street or even from inside my own house as I inventoried my challenges—our family’s growing problems. It was obvious that things had not been easier since Sam came home.

Conner hopped two-footed down the stairs. “Okay, Mom! I’m ready. I can’t wait to tell everybody what happened!” He stopped on the bottom step and looked at me. “Mom? Mommy? I’m ready. Let’s go!”

Echoes and then words crept in. Uh-oh. “Okay. You want to tell everyone about the…the seizure? Really?” I pushed my body away from the railing. He didn’t seem to be tired or to have any of the side effects Dr. Choy had mentioned. Conner even took the Dilantin with the whipped cream without any fuss this morning.

“Oh yeah! I had a CT scan. Boy. Wait ’til I tell everybody. They’ll think it’s so cool!”

His grin and his twitchy eyebrows compelled me to return his smile. I sighed and followed him into the garage. “’Bye Sam. ’Bye Madison. I’ll see you later.”

***

Prior to today, my mind had barely registered this short drive to his school despite having done it so often. Now, something compelled me to see every detail that had formerly been only vague and familiar. I wanted the past to regain me, to go back to that time before Conner’s convulsion had forced its ugliness into our lives. This feeling—illogical and an impossible attempt, I knew, to make these past few days disappear—reminded me of that passage from Fitzgerald. How long ago was it? My college roommate, Kathy, and I read and re-read and talked about Fitzgerald’s last lines in The Great Gatsby. Something about how we were all constantly going against currents yet still getting swept back into our pasts. That was exactly how I felt now, what I wanted now. And these streets—dependable sights of my former world—were my anchor to that past: the scooters and bikes that were in driveways and that laid on lawns. And that large yellow dog, with its long pink tongue that dangled from the side of its mouth as it watched from a front stoop most mornings, a fashionable brown-and-blue-striped handkerchief tied around its neck like a cravat. That sight always made me smile. He was obviously a member of some warm family. A calico cat perched atop a brick pillar; mothers chatted and pushed covered strollers that enclosed infants and toddlers bundled up against the crisp early-March air.

But today I would tell the school about Conner’s…Conner’s trouble. I swallowed hard.

“Mom, why are you going here? We should have turned back there!” Conner’s yell pierced me from the back seat.

I had missed our turn. “Oh, wow, I’m sorry. I was just in my own little world, honey.” Several minutes later, we coasted to a stop. The crossing-guard—a bald, older man with white stubble on his chin and a paunch protruding comfortably through his open, luminous lime-trimmed vest—stood in the middle of the crosswalk. He smiled in recognition and held up the red stop sign.

I stared. He looked suddenly decrepit and frail. I made myself smile back before I turned my head to watch the boys and girls crossing in front of me. Their sweet, clear-eyed, cheery faces chattered away as they passed in front of my SUV. I drummed my thumbs on the steering wheel. How many of these youngsters had seizures? One in a hundred, Dr. Choy had said. Had any of them gone through that tortured jerking and groaning and biting and wetting and…?

The guard walked back to the curb and waved us on.

I raised my hand in acknowledgment and then pulled into the school parking lot around the corner. “Okay, we’re here. I’ll go in with you. I need to talk with Mrs. Dorsey.”

“What for, Mom?” Conner unclipped his seat belt and climbed out of the SUV.

He had become very conscious of referring to me as “Mom” instead of “Mommy.” I had pangs of regret every time he used that more mature moniker, but he still called Sam “Daddy.” That was sweet.

“I told you. Dr. Choy said that I should tell Mrs. Dorsey about—about what happened a couple nights ago. Hey! Don’t forget your backpack!”

He reached for his pack. “Who is Dr. Choy?”

“He’s the doctor at the hospital who took care of—”

Conner was no longer listening. He had spotted two of his friends standing by the flagpole and had run to join them.

I sighed. Sparrows flew off branches above me in a dark, chirping wave when I slammed the door. I trudged after several groups of chatting, laughing children heading into the school. I smiled when I spotted my son with his friends; then they disappeared into their classroom. The corridor was empty. I stood and stared where he had just been.

I turned around and was confronted by a collection of staff photos that was displayed on the wall. All of those smiling expressions assaulted my emotions and exaggerated my insecurity. I recognized several faces from that SST conference months back. The reflection in the glass showed tired and puffy eyes. My short, auburn hair hung limp around my neck.

I squared my shoulders and approached the administration desk. A secretary with too-black hair and who appeared to be in her mid-fifties was rifling through a drawer in a filing cabinet behind a desk. She turned and looked at me. Our eyes met before her attention returned to the cabinet. The other secretary sat at her desk. She was younger and pretty, with a mane of flowing red hair. A small diamond ring sparkled on her left hand.

The younger woman looked up. I cleared my throat. “I’m Sandra Golden, Conner Golden’s mother. I’m here to meet with Mrs. Dorsey.”

“Do you have an appointment?”

Her manner unsettled me. She barely smiled and her eyes were unreadable. “Uh, yes, I do. I know I am early. I just dropped my child off. She’s expecting me. She said that she’d meet with me after her first-period class.”

The redhead handed me a stick-on “visitor” tag. “Please sign the visitor book. You can wait right over there.”

I took a seat in the reception area and placed my purse next to my feet. I smiled when I saw a two-year-old issue of Junior Scholastic on the table. I flicked through it. I remembered the subscription I had during junior high. The next thing I knew, Conner’s teacher was behind me telling the secretaries that she would be in the conference room with the parent of one of her students.

I sat up, rubbed my eyes and rose to greet her. “Oh, Mrs. Dorsey, I must have dozed off.”

We shook hands. She gave me a strained smile. I glanced down at my soft, brown leather jacket over my pink blouse, tan slacks and brown slip-on shoes. I felt a little haggard; she must have seen that. I pulled in my stomach.

“Let’s go where we can talk. Mr. Backus, our art teacher, is taking over my class this period. How are you? I was wondering what was up when I got your message. It sounded important.” We walked through the administration area to the conference room.

The teacher opened the door. A set of fluorescent bulbs automatically flickered on and flooded the room with cold-blue light. I recognized it as the room in which I had met the Student Study Team.

Mrs. Dorsey closed the door behind us and pulled out two chairs. We sat next to each other at the corner of the conference table.

I shivered and rubbed my hands together. I was glad I had worn my jacket.

“I’m sorry that the room is so cool, Mrs. Golden. It’s like this when no one has used it for a while.”

I nodded and smiled. I leaned forward and blinked rapidly as I began to tell Mrs. Dorsey why Conner wasn’t in school yesterday. My voice was low and tremulous as I described his convulsion, the E.R. visit and his anti-seizure medication.

I registered the genuine shock in Mrs. Dorsey’s voice when she finally spoke. “Mrs. Golden, I’m so sorry! Certainly, I will keep an eye on Conner. Our school nurse will, too. It’s really good that you let us know,” she gushed. We appreciate it. I mean, I have taught other children with epilepsy before, and we—”

“Conner does not have epilepsy, Mrs. Dorsey. No one said that he has epilepsy! He had a seizure. That is all! The doctor said that it’s not epilepsy.” My stomach churned; I tasted sour coffee in the back of my throat. I glared into her green eyes. How dare she say that Conner had epilepsy! I couldn’t let Conner get that label: “epileptic.” I would not let anyone even think it. It had come to this.

I was suffering and, oddly, it was a shameful feeling. I shouldn’t have sunk to such depths. I couldn’t help how I felt then—illogical, but it was the truth. Illness had come to my family. It was going to be up to me to be strong and to support my son.

Mrs. Dorsey touched my arm and lowered her head. She said in a near-whisper, “No, of course not, Mrs. Golden. I’m not—I’m not a doctor. I am sorry. I didn’t mean—”

I exhaled, suddenly embarrassed and guilty for my outburst. She truly was sweet. “No, no, I’m sorry Mrs. Dorsey. You did not deserve that. I’m not—I shouldn’t have—it’s just—” I bent my head into my cupped hands as uncontrollable sobs racked my body.

Mrs. Dorsey put her hand on my shoulder. “I’m sure everything will turn out all right for Conner. Please don’t cry. Please, Mrs. Golden. You’ll see.” I looked up and saw tears welling in her eyes. Dark spots appeared on the emerald-green scarf around her neck.

Mrs. Dorsey grabbed a wad of tissues from a pink box on the table. She gave some to me and kept the rest. We blew our noses, leaned back in our chairs and looked at one another. Then we laughed, both dabbing our eyes and cheeks. For these moments, the shared emotions melded us.

I said softly, “Look at us! Thank you, Mrs. Dorsey. I am so sorry. I have to go, now. I’ll talk to you later. Thank you for your concern about Conner.” I stood up. I had to get out of there and be alone.

The teacher reached over and placed her palm over my hand. “No apology necessary. I understand. Again, I appreciate your telling me what happened to Conner,” she added as she looked up at me. We’ll keep an eye on him.” Then she stood.

I grabbed my purse and hurried out of the room.

 
Lance Fogan, M.D. is Clinical Professor of Neurology at the David Geffen School of Medicine at UCLA. “DINGS” is his first novel. It is a mother’s dramatic story that teaches epilepsy, now available in eBook, audiobook and soft cover editions.