Wednesday, January 25, 2023

Blog #150: DINGS Chapter 25

 



 

Epilepsy! All my denial—my protective armor—shattered. But of course…something had been undercutting this realization for months. Why had he been wetting his pants at his age? And, the times when I thought he was not paying attention and maybe he seemed confused. Dr. O’Rourke’s interview…Conner’s secrets…all his hidden spells…these dings…over a year. Oh, God. Oh, my God. I leaned forward.

“Epilepsy? So, that’s it. This is epilepsy. Oh, God!” I leaned back and stared up at the ceiling.

Conner had been watching me. He grabbed my hand and gritted his teeth, his eyes wide with alarm. I put my other hand over Conner’s and patted it several times. Sam wrapped one arm around Conner and blinked hard. He reached across our boy’s body to cover Conner’s and my hand with his.

The doctor furrowed his brow as he ran his tongue over his upper lip. “Mr. and Mrs. Golden, we say a person has epilepsy when he has had more than one seizure. Conner’s dings are all seizures. It seems like he’s had many of them, a great many of them.” He looked at Conner.

Conner stared back.

My mouth was so dry. I squinted and gazed above the doctor’s head. My preliminary presumptions surrounding Conner’s convulsion dissolved in tangled confusion. My temples throbbed. I looked at Conner and lowered my head. Conner has to be protected now. I stifled a sob.

I lifted my head and looked into the neurologist’s eyes. My husband gazed straight ahead. I took a deep breath. “I didn’t want it to register, Doctor. I’m sorry. Yes, you and Conner were talking about his dings—or whatever he calls them—those little seizures; apparently there have been lots of them.”

Dr. O’Rourke swiveled his leather chair to the side and crossed his legs. He kept his gaze on me as he tapped his pencil softly on his desk.

Conner watched me, too. He opened his mouth, but kept silent as I turned away.

I looked at the floor and then I closed my eyes and said, “He’s been having these things for over a year? Right in front of me? How could I have missed them? How could I not have seen them?”

I had known that Conner’s convulsion weeks ago could completely change our lives. I just didn’t know how. I didn’t want to know. It was deep in that chamber where I kept secrets, repressed secrets. Conner looked at me again. “Mom! What?”

“Oh, honey.” I wrapped my arm around his thin shoulders. Sam clenched his fists in his lap.

The neurologist spoke in a slow, deliberate voice. “Your son’s seizures are different from the grand mal seizure, the convulsion that brought him to the hospital. Conner’s seizures are caused by abnormal electrical brain activity. They probably originate in just one part of his brain—that would be in his temporal lobe—less likely in his frontal lobe.” He paused for emphasis. “Convulsions affect the whole brain. Anybody witnessing a convulsion would recognize that type of seizure. However, Conner’s dings—as he refers to them—can be harder to recognize…they affect just one part of the brain. What’s so difficult for many people to accept is, as I just said, a cause for epilepsy is often never identified.”

“You mean that, don’t you? You don’t know why they’re happening?” The hostile tone in Sam’s voice surprised me.

“Look. My patients say, ‘Dr. O’Rourke, there are men walking on the moon. Don’t tell me in this day and age that you can’t say why the seizure happened. How can that be?’ Mr. Golden, there are just so many things that we do not understand, especially when it comes to the brain. Medical knowledge humbles us. The more our experience and research teaches us the more we appreciate how little we actually understand. We do not even know how we think or what thinking really is.

“The EEG should document where in the brain these seizures are originating,” he continued. “However, a normal EEG does not mean that there is no seizure disorder. ‘Seizure disorder’ is another term we use that means epilepsy. An EEG can still be normal if the epileptiform discharges do not happen while the test is being done. And that’s common.”

I lowered my eyes and dug my fingernails into the edge of my chair. “What about the Dilantin?” I leaned forward and looked up. “Does Conner still have to take it? I guess so, huh? But I was, uh, we were so hoping, praying, that he could stop taking it today…”

I saw Conner’s puzzled expression. Sam’s eyes locked onto Dr. O’Rourke, but the neurologist focused on Conner.

“Let’s discuss treatment options after I finish—” Dr. O’Rourke coughed into his fist and cleared his throat. “Excuse me. After I finish your son’s physical examination. I want to get a more complete picture of what’s going on before I make any decision about medications.”

He asked him a few more questions to affirm that his mental functions were intact. “Spectacular,” Dr. O’Rourke said with a broad grin. Conner knew the date, where he was right at that very moment and his home address. “Conner is very well-oriented to date and place. He even knows who the president is. Not everyone can tell me that—even adults, believe it or not.”

Our boy beamed.

The neurologist demonstrated that Conner could also add and subtract, count and spell simple words backward—all accomplished appropriately for a third-grader. His memory and his ability to draw, write and name objects the doctor held up were normal, too. “You’re very smart for an eight-year-old.”

“I’m eight and a half, Dr. O’Rourke.”

The neurologist scrunched his eyes shut, grimaced and slunk down in his chair. “That’s right. You already told me. Eight and a half. Sorry.” He straightened up and winked at us.

He asked me about Conner’s past illnesses, immunizations and symptoms in other parts of his body. He also wanted to know about my pregnancies. “Has he ever exhibited any unusual or disturbing behaviors?” His eyes darted between Sam and me.

“No. He’s always been a normal child.” I looked at Sam. He nodded several times.

Conner sniffled and looked up at me.

“Very good. Do any diseases run in the family?”

“No, Doctor,” Sam answered in a solemn voice. “None that we’re aware of, anyway.” We looked at each other. I raised my eyebrows and shook my head in agreement.

Dr. O’Rourke’s face became very serious as he asked, “Do you smoke, young man?”

Our son twisted in his chair and laughed. “No-oooo. The sy…the sychilist at school—the first icky one—she wanted to know if I was married. That was funny.”

“He’s referring to the school psychologist who first attempted to do testing on him in the school, Doctor. Apparently, she and Conner didn’t get along. That’s what both of them told me, anyway. That’s sort of how we got to Dr. Frank Thomas.” My grim expression softened into a smile.

“Oh.” He said to me and then turned back to Conner. “So you don’t smoke. That’s what I like to hear.” The doctor stood up. “Okay, family. Let’s go across the hall to the exam room so I can check Conner over.”

He walked around his desk and put his arm across our boy’s shoulders. “Don’t worry, Conner. I won’t be giving you any shots today. I’ll just be checking your eyes and things.”

We shifted in our chairs and began to rise. Conner said to Sam, “I have to go to the bathroom, Daddy.” His voice had become tremulous again.

“Can’t you wait until the doctor’s finished, Conner?” I asked with a sharp tone.

“No!” He practically shouted and cast a sidelong glare at me. He hitched up his pants and hopped a few times.

“Okay. Let’s go.” Sam took him by the hand.

I sat down again. “I had no idea that Conner’s been having these things, Dr. O’Rourke—and for so long?” I leaned forward. “I’ve gone to the Internet and just about every...but, I never suspected this.” I licked my lips and hesitantly asked in a softer voice, “You really think he has epilepsy, don’t you, Doctor?” My throat and chest were tight. Of course it’s epilepsy. He just rammed it down our throats. I was so blind.

Dr. O’Rourke went behind his desk. He stood there with a hand on the back of his leather chair, fixed his gaze on me for a moment, and then sat down. He rested his palms on the desk. An inch of light-blue shirtsleeves protruded from beneath the sleeves of his white coat. I noticed HO embroidered in dark-blue thread on the left cuff. I did not expect a physician to be so fashion-conscious as to have a monogram on his shirt. I don’t know why I was surprised; look at his bowties. I looked for cuff links, but saw none. The scene was so surreal that for a moment I wondered if I were living it or merely watching myself and the doctor in a silent movie.

“Look, Mrs. Golden, we’ve discovered a lot today. I am probably as surprised about this diagnosis as you are. I did not expect this history of covert, hidden seizures based on my review of the hospital records. I believe that Conner has a form of epilepsy called ‘complex partial epilepsy.’ Its newer term is ‘mesial temporal lobe epilepsy.’ Look at it this way: your son has been suffering; that is why you are here. That is the reality. Now that we have identified what is wrong we can do something about it. We can help him.”

Dr. Choy had said virtually the same thing to me at the hospital. Did they all read the same script?

The neurologist arched his eyebrows. “I expect that Conner will do fine, Mrs. Golden. I understand how upsetting this is for you right now, believe me. But, you’re all going to be fine.”

His words morphed into distant sounds. I forced a weak smile and stared at the framed documents on the wall. Then I asked again, “Are you sure? Are you absolutely sure that Conner has epilepsy? It couldn’t be something else?” I groped for an admission of doubt. “No, no. Of course...It’s just that—” I stared out the window.

“I’m sure, Mrs. Golden. His history is classic: the auras—which are the warnings of the seizures and the smells that he told us that he gets—his confusion, losing control of his bladder. All of those phenomena are textbook symptoms.”

Everything that this neurologist said would be a part of our lives—always, forever. So, this would be my lot in life. I remained motionless. I felt so hollow.

Dr. O’Rourke swiveled his chair around to face the computer on the desk extension. Thuk, thuk, thuk—the keys spoke as he typed. His eyes skimmed the screen, but occasionally I saw him glance at me as I juggled my pain and anguish.

When Conner and Sam returned to the office, Dr. O’Rourke ushered us across the corridor to his exam room. The fluorescent lights flickered on as soon as he opened the door. Conner turned his head from side to side before he entered the room with us.

I remembered that I had read how flickering lights could induce seizures in some epileptics. Was it better to say ‘people with epilepsy’? What should they be called? Was Conner an epileptic? Or was he a child with epilepsy? I squeezed my eyes tight and my body shuddered.

Closed vertical blinds blocked out most of the late-afternoon sunshine that tried to stream through a single window. A rack on the back of the door proffered a selection of brochures on different neurological diseases and various popular magazines and children’s periodicals. There were a few copies of National Geographic, too. A low shelf held several rubber dolls, a Barbie doll, a few toy soldiers and several small action figures similar to the snap-together ones Conner had at home. I wondered if the doctor put them together himself. He must have many children as patients; maybe one of them did it.

Conner was immediately drawn to a colorful diagram on the wall: a gray wrinkled-brain attached to the spinal cord with yellow nerves projecting to all parts of the body.

The neurologist tapped the boy’s shoulder. “Take everything off down to your underpants, Conner. Shoes and socks off, too.” Dr. O’Rourke looked at me as he said that and I nodded. “When you’ve undressed put on the folded gown that’s on the exam table. I’ll be right back.” He smiled and left the room. The door shut behind him with a loud click.

I sat on a green plastic chair and waited for Conner to undress. I recognized several framed photographs on the walls that I remembered having seen on the Internet. The first picture was of a very young Hal O’Rourke in Papua New Guinea. Another large frame had a newspaper article about his interest in Shakespeare and neurology.

Sam moved closer and inspected the pictures, too.

What was the doctor doing now? Where did he go? Paperwork? The bathroom? Dr. O’Rourke had discovered things that all the other doctors had missed. Why didn’t Dr. Choy or Dr. Jackson or even Dr. Thomas—even the school psychologists—why didn’t they figure out what was wrong? What about his teachers? Why did it take so long? And me—his mother! I was the worst of all. I closed my eyes and shook my head at my stupidity. Well, Dr. Choy did mention that it could be epilepsy, but I wouldn’t entertain that diagnosis then. That was preposterous.

 

Lance Fogan, M.D. is Clinical Professor of Neurology at the David Geffen School of Medicine at UCLA. His hard-hitting emotional family medical drama, “DINGS, is told from a mother’s point of view. “DINGS” is his first novel. Aside from acclamation on internet bookstore sites, U.S. Report of Books, and the Hollywood Book Review, DINGS has been advertised in recent New York Times Book Reviews, the Los Angeles Times Calendar section and Publishers Weekly. DINGS teaches epilepsy and is now available in eBook, audiobook, soft and hard cover editions.

Monday, December 26, 2022

Blog # 149: UNEXPECTED COGNITIVE DETERIORATIONS IN EPILEPSY

 



 

Several blogs at LanceFogan.com (Blog #145: Epilepsy Patient Passes Driving Test After Brain Surgery; and Blog #121: If Your Seizures Aren't Controlled Epilepsy Surgery Is Safe and Really Can Help) have highlighted the effectiveness of epileptic surgery. The foci of abnormal brain cell neurons in focal epilepsy poorly responsive to anti-epilepsy drugs (AEDs) are removed. If surgically removing these cells is considered safe and the surgery would not affect speech, movement, sensory, memory and visual abilities, this treatment should be strongly considered. Surgical intervention commonly is the best effective, and commonly curative treatment.

Long-term studies have shown that after successful epilepsy surgery in the great majority of patients their brain performance recovers. However, recent studies at the University of Bonn, Germany1 found after the successful surgery that in rare cases neuropsychological performance declines months later. The study found that the surgical tissue removed indicates a rare secondary independent, neurodegenerative disease beyond any direct surgical effects. Evidently, a small subset of patients experiences a significant cognitive decline following surgery for temporal lobe epilepsy (TLE), independent of and in addition to the eventual cognitive sequelae of the surgical treatment. Who are these patients, and what are the underlying causes?

Eight percent of all 355 patients in the study with at least 2 neuropsychological assessments after epilepsy surgery showed a relevant cognitive decline from one postoperative follow-up examination to a subsequent evaluation. The most frequently affected cognitive domain by far was verbal memory (96%), followed by figural memory (33%) and executive functions (25%). Repeated cognitive declines in the time after surgery were observed in 5 of the 24 patients (21%).

The findings indicate that patients who unexpectedly displayed unfavorable cognitive development beyond any direct surgical effects show rare and very particular pathogenetic causes or parallel, presumably independent, neurodegenerative alterations. In those affected, was the removed tissue damaged by secondary disease at the time of surgery - either through inflammation or incipient Alzheimer's dementia-like? The researchers considered with these pre-existing conditions; the body's defenses are particularly active. It's possible that the trauma of the surgical procedure further stimulates the immune system in the brain to attack healthy brain tissue." Further studies are indicated.


  1. Reimers A, Helmstaedter C,  Elger C, et al., "Neuropathological Insights into Unexpected Cognitive Decline in Epilepsy." Ann Neurol., Nov 2022

 

Lance Fogan, M.D. is Clinical Professor of Neurology at the David Geffen School of Medicine at UCLA. His hard-hitting emotional family medical drama, “DINGS, is told from a mother’s point of view. “DINGS” is his first novel. Aside from acclamation on internet bookstore sites, U.S. Report of Books, and the Hollywood Book Review, DINGS has been advertised in recent New York Times Book Reviews, the Los Angeles Times Calendar section and Publishers Weekly. DINGS teaches epilepsy and is now available in eBook, audiobook, soft and hard cover editions.

 

Friday, November 25, 2022

Blog #148: EPILEPSY AND SEVERE ABDOMINAL PAIN



    Belly pain is a common complaint primary care doctors deal with. A specific cause often can’t be determined. Psychological and emotional causes are considered when your doctor cannot identify a cause. But, don’t exclude a physical cause that can’t be detected. As I have often told my patients, “Medicine is the practice of an art. Doctors really have too few answers and doctors can cause lots of problems.” So, follow-ups and gathering more information often reveals the correct diagnosis.

    Episodic belly pains can suggest epilepsy known as ABDOMINAL EPILEPSY. This phenomenon is rare. In a large series of patients with epilepsy only 2.8% (24 of 858) experienced pain of any sort (headache, facial and body pains on one side) but only 3 of these 24 patients had belly pain: severe and sharp “like a knife”. 1 I personally considered this possibility, especially in children. Some people with this condition have no other features of epilepsy, i.e., no altered consciousness or movements such as lip-smacking seen in complex partial seizures, exaggerated swallowing, shaking nor incontinence during the episode. A case described by physicians at the Mayo Clinic contained both elements of episodes of pain and epilepsy. Many physicians and patients can be confused by this combination of symptoms. 2

    A person had no known risk factors for epilepsy except for a fall at age 4. He lost consciousness associated with the fall. That same year he experienced his first seizure: he initially complained of belly pain, ran out of the house and had a convulsion. EEG then showed no diagnostic etiology for the seizure, and he was given no antiepileptic medications (AEM). At age 20 he had another convulsion and carbamazepine was prescribed. When non-compliant the patient discontinued his AEM and more convulsions occurred. Additionally, the patient complained of recurrent episodes of central abdominal pain since childhood up to 10 times some days; he could go a month without these pains. The pain would last seconds to hours.  Multiple examinations with endoscopes peering into his intestinal tract were unrevealing. A diagnosis of irritable bowel syndrome was proposed. At times the pain was so severe he contemplated suicide.

    Because of no altered consciousness nor convulsions his carbamazepine dosage was reduced at age 32. He then had a complex partial seizure preceded by belly pain which lasted throughout the seizure. He then consulted with a neurologist who recognized the recurrent episodes of belly pain as possible epileptic phenomenon. He was hospitalized and studied with EEG and video monitoring. Several complex partial seizures were recorded. Before each seizure onset he reported mid-belly pain. EEGs showed an epileptic focus in the left frontotemporal region. MRI showed scarring in the inner side of the temporal lobe, i.e., mesial temporal sclerosis, a common abnormality found in complex partial seizures. Specialized EEGs identified the abnormal focus. It was surgically removed and he has remained free of seizures and episodic belly pains for 5 years, 3 without AEMs. 2

    Other researchers found these belly pain seizures associated with parietal lobe and frontal lobe origins.

    In my past blogs, surgical removal of brain epileptic foci is beneficial, often curative, and safe (see my blogs #143 and blog #114 at website LanceFogan.com)

     

    1.  Young GB,Blume WT. Painful epileptic seizures. Brain. 1983; 106 (pt 3):537-554.

    2.  Eschle D., Siegel A. and Wieser H-G. Epilepsy with severe abdominal pain. Mayo Clin

    3.   Proc. 2002; 77:1358-1360.

     

    Lance Fogan, M.D. is Clinical Professor of Neurology at the David Geffen School of Medicine at UCLA. His emotionally hard-hitting family medical drama, “DINGS, is told from a mother’s point of view. “DINGS” is his first novel. Aside from acclamation on internet bookstore sites, U.S. Report of Books, and the Hollywood Book Review, DINGS has been advertised in a recent Publishers Weekly, New York Times Book Review and the Los Angeles Times Calendar section. DINGS teaches epilepsy and is now available in eBook, audiobook, and soft and hard cover editions.

     


Monday, October 24, 2022

Blog # 147: CONSIDER OUR FELLOW EPILEPSY SUFFERERS AND CAREGIVERS IN UKRAINE

 



 

 The International League Against Epilepsy (ILAE) reported on Newswise 9-Mar-2022, tBottom of Formhe conflict has had serious repercussions for people with epilepsy and the health professionals who support them. About 250,000 of Ukraine’s population of over 40,000,000 are reported to have epilepsy. Their supplies of anti-seizure medications are running low. Seizure frequency is likely to increase due to the trauma and destruction we see on nightly newscasts. We know why:

  •  Lack of anti-seizure medication and abrupt cessation of treatment.
  •  Potential for traumatic head injuries, premature births, and infectious disease outbreaks, which can all lead to seizures.
  •  Lowering of seizure threshold due to stress, sleep deprivation, and hunger.

 

Increase in seizure frequency following major disaster is well documented:

  •  In 2011, in the eight weeks following the earthquake and subsequent tsunami in Japan, hospitalizations for seizures increased by over 50%.
  •  In 2017, a 20% rise in seizure presentations was reported in Florida after Hurricane Irma.
  •  The mortality rate from untreated, prolonged seizures is over 20%.

 

You know, in addition to anti-seizure medications, people with diagnosed epilepsy require regular contact with health professionals and treatment of associated conditions. Conditions such as depression, anxiety, dementia, migraine, heart disease, and arthritis are up to eight times more common in people with epilepsy than in the general population.


(ILAE) Actions

On March 7, ILAE held a meeting with leaders from chapters in all countries affected by the situation in Ukraine. The group agreed on a set of key actions (see below). ILAE is forming a task force to oversee implementation of these actions, as well as to regularly advise on the unfolding situation.

In addition to anti-seizure medications, people with diagnosed epilepsy require regular contact with health professionals and treatment of associated conditions. Conditions such as depression, anxiety, dementia, migraine, heart disease, and arthritis are up to eight times more common in people with epilepsy than in the general population. What do patients confined to protective cellars due to rockets and bombing do?


Here’s what the ILAE endeavors to accomplish for epilepsy in current Ukraine:

Work with all ILAE chapters to assess needs for medications; Liaise with pharmaceutical companies to facilitate life-saving medications for them; Develop guidelines for clinicians on different formularies and how to safely change prescriptions; Translate epilepsy-related terms to help all clinician-patient communications; Fundraise to provide mobile phones and SIM cards to allow connecting with services, psychological support and medical record keeping; Develop clinical networks to assist front-line clinicians to access expert advice on epilepsy; advocate all governments for free prescriptions for all people with epilepsy and promote including anti-seizure medications in all emergency medical supplies.


IBE/ILAE Joint Statement

ILAE and its sister organization, the International Bureau for Epilepsy (IBE), released a statement regarding the situation in Ukraine:

IBE and ILAE work with, and on behalf of, all people with epilepsy – wherever they live in the world – to promote care and treatment, to improve understanding and inclusion, and to address discrimination in all its forms.

ILAE and IBE are concerned about the impact of the current situation in Ukraine on the availability of treatment and access to care for people with epilepsy in the region.

We also know that an increase in seizures and epilepsy is likely because of conflict related injuries, infectious disease outbreaks and a rise in premature and complex births.

Additionally, we are concerned about the rights of people with epilepsy who often face increased discrimination, exclusion, and stigma during times of crises.

ILAE and IBE call on authorities and humanitarian responders to ensure uninterrupted supplies of critical and life-saving anti-seizure medicines.

ILAE and IBE urge all to respect the neutrality and sanctity of medical personnel and health facilities during this conflict.

For more information on these initiatives, contact:

 

Founded in 1909, the International League Against Epilepsy (ILAE) is a global organization with more than 125 national chapters.

Through promoting research, education, and training to improve the diagnosis, treatment and prevention of the disease, ILAE is working toward a world where no person’s life is limited by epilepsy.



Lance Fogan, M.D., is Clinical Professor of Neurology at the David Geffen School of Medicine at UCLA. His hard-hitting emotional family medical drama, “DINGS, is told from a mother’s point of view. “DINGS” is his first novel. Aside from acclamation on internet bookstore sites, U.S. Report of Books, and the Hollywood Book Review, DINGS has been advertised in recent New York Times Book Reviews, the Los Angeles Times Calendar section and Publishers Weekly. DINGS teaches epilepsy and is now available in eBook, audiobook, and soft and hard cover editions.

 

Monday, September 26, 2022

Blog #146: STUDY FINDS NO SIGN OF BRAIN INJURY DESPITE RECURRENT FOCAL SEIZURES

 



A study analyzed brain tissue from 20 patients with recurrent drug-resistant seizures due to specific types of congenital abnormalities in brain cortex that promoted seizures from that focus. “Despite thousands of focal seizures over a lifetime, no signs of nearby cell loss nor of reactive inflammation—all signs indicative of brain damage—were seen…in the areas surrounding these type II focal cortical dysplasias studied,” researchers at the division of clinical epileptology and neurology at the Carlo Besta Neurological Institute in Milan, Italy reported.1

The researchers hoped their findings would encourage patients and reduce fears of brain damage associated with this specific type of congenital abnormal brain cortex cells causing their frequent seizures.

About 30% of epilepsy patients in general do not respond to pharmacological therapy and 30% of these patients can be candidates for surgery if the seizure focus can be identified and judged to be safe for removal. Those patients who are seizure-free after surgery that removes these specific types of abnormal brain cells can have their antiseizure drugs gradually withdrawn. Social life, quality of life and productivity improvements would be expected.

The frequency of seizures in this study of these specific brain cell types of abnormality ranged from one/month to 300/month. The duration of their epilepsy ranged from one to 40 years.

This study does not contradict substantial evidence that seizures in general can cause brain changes, especially in the limbic system, i.e., that area sensitive to memory function.

 

 

  

1)     Rossini L, Garbelli R, Gnatkovsky V, et. al. Seizure activity per se does not induce tissue damage markers in human neocortical local epilepsy. Ann Neurol 2017; 82: 331-334.

 


Lance Fogan, M.D. is Clinical Professor of Neurology at the David Geffen School of Medicine at UCLA. His hard-hitting emotional family medical drama, “DINGS, is told from a mother’s point of view. “DINGS” is his first novel. Aside from acclamation on internet bookstore sites, U.S. Report of Books, and the Hollywood Book Review, DINGS has been advertised in a recent Publishers Weekly, New York Times Book Review and the Los Angeles Times Calendar section. DINGS teaches epilepsy and is now available in eBook, audiobook, and soft and hard cover editions.

 

Thursday, August 25, 2022

Blog #145: Epilepsy Patient Passes Driving Test After Brain Surgery


  


Several of my previous 144 monthly blogs on LanceFogan.com dealt with brain surgery as a chance to improve, or even cure, epilepsy in those whose epilepsy is poorly controlled. (See Blog # 89 December 26, 2017: Surgical Removal of Seizure Foci in Your Brain to Cure Poorly Controlled Epilepsy is Safe!; Blog # 101 February 26, 2019: Epilepsy—Fit to Drive?; Blog # 114 January 26, 2020: Epilepsy Surgery in Childhood and Long-Term Employment Is Encouraging.; Blog # 121 August 25, 2020: If Your Seizures Aren’t Controlled Epilepsy Surgery Is Safe and Really Can Help).

 

The greatest chance to cure your uncontrolled epilepsy is by successfully removing the seizure focus surgically.

My clinical experience has shown that there is so much that can physically alter the brain anatomically by surgery and by unintended trauma that surprisingly results in undetectable, or barely detectable, changes in a patient’s mental and physical capabilities. I have examined people who have been shot in the head, the bullet entering one side traversing through parts of the brain and exiting the other side of the head sparing sensitive brain areas. When neurosurgeons and neurologists perform specialized types of EEGs and imaging scans anticipating epilepsy surgery, sensitive parts of the brain can be identified and avoided.

The BBC on-line service recently reported that a man with epilepsy says he finally has independence. A surgical procedure removed his epilepsy focus and he then was able to pass his driving test.1 The 40-year-old man had the brain operation eight years ago. Government rules meant the computer programmer from Birmingham was unable to take his driving test unless he was seizure-free for two years. But twice since learning to drive he had a seizure, setting him back each time and then Coronavirus lockdowns led to further delays. But eventually he was able to take the test and since passing, plans to take his young family on regular camping trips.

The man said he never thought he would be able to drive after living with epilepsy since childhood. But he underwent lesion resection, which involved inserting electrodes into his brain to detect electrical activity and carefully removing abnormal tissue.

Discuss possible epilepsy surgery with your neurological caregivers.

 

1)    Epilepsy Patient Passes Driving Test After Complex Surgery. https://www.bbc.com/news/uk-england-birmingham-62568014. Aug 16, 2022.

 



Lance Fogan, M.D. is Clinical Professor of Neurology at the David Geffen School of Medicine at UCLA. His hard-hitting emotional family medical drama, “DINGS, is told from a mother’s point of view. “DINGS” is his first novel. Aside from acclamation on internet bookstore sites, U.S. Report of Books, and the Hollywood Book Review, DINGS has been advertised in a recent Publishers Weekly, New York Times Book Review and the Los Angeles Times Calendar section. DINGS teaches epilepsy and is now available in eBook, audiobook, and soft and hard cover editions.

 

 

 

 

 

 

 

 

 

   

 

Monday, July 25, 2022

Blog #144: “Should I tell people I have epilepsy?” What do neurologists with epilepsy do?



 

Your insecurities, your anger, and frustrations about your epilepsy are not unique to just you. A neurologist in south Florida had to be driven to her clinic by her husband and picked up at the end of the day. This neurologist has left temporal lobe epilepsy for 16 years. Her focal seizures secondarily generalized into convulsions. Now, well controlled, this director of an epilepsy clinic worries about having breakthrough seizures. That’s why she concentrates on getting enough sleep and she counsels her patients to do the same. Her stress is managed by meditation and exercise.1

 

Neurologists with epilepsy are more forgiving of their patients who occasionally lapse in their medications and self-care. They can relate. Having the condition has made these neurologists more compassionate and understanding of their epilepsy patients. They, too, feel the embarrassment and stigma that comes with epilepsy. One neurologist who has had epilepsy since she was an infant, relates that she tells people that the epilepsy doesn’t change who they are or what they do. It doesn’t mean they can’t achieve their goals and what they can accomplish in life. Despite a right temporal lobectomy after three different anticonvulsants failed to control her seizures, seizures recur every few months. Her seizures awaken her—she has a head rush and lip smacking and her left-hand clenches. Epilepsy worries are there for her every day. She avoids alcohol and tries to get adequate sleep.

 

One neurology chief of department and epilepsy specialist was diagnosed with “probable epilepsy” at age 16. Then a tumor was found. He has had no seizures since brain tumor surgery 29 years ago. One of his earlier convulsions caused a spinal fracture from the intense muscle contractions. He took anticonvulsants for 5 years after the brain surgery and has had no further seizures for 30 years. “Because I shared my story, some patients want to see me because they know I can understand and I can relate.” This neurologist helps epilepsy patients find a balance between their personal safety and their independence and autonomy.

 

Other neurologists with epilepsy don’t always disclose their condition, but they do if they feel it will convey more confidence that I understand what they are going through and how it will affect them long term. It’s advised that one needs a core group of people who know about their epilepsy. Wear an epilepsy ID bracelet/necklace to avoid interventions that could be unnecessary and risky if others are unaware of your epilepsy. The more people around you who know, the safer you will be and the better quality of your care.

 

Tell others of your epilepsy: “If I have a seizure, stay with me, and put me on my side to keep me safe. Don’t try to restrain my shaking or put anything in my mouth. The shaking will stop in a minute or two and then I’ll be sleepy and confused. Stay with me.”

 

 

 

1.)   Colino S. My neurologist has epilepsy. Brain and Life. June/July 2022 p24-27.

 



Lance Fogan, M.D. is Clinical Professor of Neurology at the David Geffen School of Medicine at UCLA. His hard-hitting emotional family medical drama, “DINGS, is told from a mother’s point of view. “DINGS” is his first novel. Aside from acclamation on internet bookstore sites, U.S. Report of Books, and the Hollywood Book Review, DINGS has been advertised in a recent Publishers Weekly, New York Times Book Review and the Los Angeles Times Calendar section. DINGS teaches epilepsy and is now available in eBook, audiobook, and soft and hard cover editions.