Blog # 171: Excerpt from Dr. Fogan’s medical mystery novel, DINGS Chapter 26 Part A

 

 

Conner shuffled over to a shelf. His lithe, four-foot frame was draped in an over-sized adult patient gown that floated around his ankles. He wore it open in the front rather than in the back.

He picked up a plastic, multi-colored model of the brain. He turned it over and sideways, and then started to pull apart its components. A piece fell onto the thinly carpeted floor.

“Don’t do that, Conner!” I said sharply.

Sam turned and winked at him. “Aw, I’m sure that’s what it’s there for, Sandra. He’s okay.”

When the doctor returned I saw him focus on Conner’s underpants. We exchanged glances and grins about the tan-and-olive camouflage motif. Conner had begged for them because they were military like his dad. I bought him a dozen.

Sam and I sat beside each other along one wall. I started to get up. “Would you like me to reverse the gown, Doctor? Conner insisted on tying it in front.”

“No, no. It’s fine. Okay, Conner, let’s see you just walk back and forth, normally.”

“Like this?”

The neurologist nodded. He evaluated Conner’s arm swings, balance and how he walked. “Perfect. Now, walk on your tiptoes. Like this.” Dr. O’Rourke rose onto the balls of his feet and demonstrated what he wanted Conner to do.

“Good. Now, walk on your heels like this.” The doctor rocked back onto his heels as he leaned forward and elevated the toes of his shiny, black shoes to take a few awkward steps. Once again, our boy mimicked him. I covered my mouth with both hands to conceal a smirk at their awkward postures.

“Fine! Your legs are equally strong. Now, I want you to walk as if you are on a tightrope. Put one foot in front of the other and touch the heel in front with the toes on the other foot. Keep the feet real close together.”

Conner took five perfect in-line steps.

“You’ve got great balance.”

“This is easy, Dr. O’Rourke!” Conner beamed.

The neurologist returned Conner’s broad, toothy grin. “I knew you’d like this part of our visit. Now, hop up and down on your right leg like this.” Dr. O’Rourke put his hands over the side pockets of his white coat to prevent papers and tools from popping out as he hopped a couple of times. Conner imitated him. “Now switch legs. Excellent!”

“Okay, now put your feet together like this so that they touch ankle to ankle, side by side.” The doctor stood with the side of each of his shoes touching the other. “Yes, just like that! Now, stand like that and don’t move.”

“This is so easy!” Conner exclaimed. Sam smiled at him and then looked at me.

The neurologist nodded. “Now, stay just like that and close your eyes. Don’t move.”

Conner stood ramrod straight and squeezed his eyelids extra tight in that exaggerated way that little kids do. A few seconds later, the doctor said, “That’s great, Conner. Your balance centers could not be better. Now turn around so I can check your back.”

He lifted Conner’s gown and bunched it up around his shoulders. “I don’t see any spinal curvatures or birthmarks that sometimes accompany degenerative nervous system diseases that are associated with epilepsy.”

That was good to hear. All doctors should interact with patients and their families: educate us, for crying out loud! Dr. Choy did that, too.

“Okay, now climb onto the exam table, young man.” He felt Conner’s wrist pulses and then inspected Conner’s hands and fingernails. “There can be telltale clues of diseases here.”

Then he picked up a thin, cloth measuring tape and wrapped it around Conner’s head. “Your head circumference is fifty-three centimeters.” He looked at a chart and declared, “Normal head size.”

“Oh, that’s good!” I felt my heart thump and then, just as suddenly, a sharp gloom settled over me. I had become so distracted by their interactions that for a precious few moments I had actually forgotten why we were here.

Conner looked at us and giggled. He seemed to be enjoying himself.

The doctor smiled and began to wrap a pediatric-size blood-pressure cuff around Conner’s left upper arm.

“No! That gets too tight!” Conner yanked his arm away.

“This is a very important part of the evaluation, Conner. It’s a small cuff made for children. I don’t think I’ll have to make it too tight, and the pressure will only last for a few seconds. I promise.”

“Let the doctor do it, Conner,” Sam commanded.

Conner cast a sober glance at his father and slowly extended his arm. He grimaced every time Dr. O’Rourke rhythmically squeezed the large black bulb that slowly tightened the cuff around Conner’s arm.

The doctor placed his stethoscope in his ears: “Seventy-eight over fifty. That’s fine!”

Dr. O’Rourke moved the stethoscope to the boy’s chest. “No heart murmurs.” Then he moved the stethoscope over both sides of the boy’s neck. “No abnormal ‘whooshing’ sounds here, either. That suggests no blockages in the arteries leading to the brain. I wouldn’t expect to hear any in a child.”

Conner nodded and looked into the neurologist’s eyes. Dr. O’Rourke smiled at him.

“I appreciate how you’re explaining what you’re doing, Dr. O’Rourke. It’s like we’re all in medical school.” I laughed and gave Sam’s hand a gentle squeeze.

Finally, the neurologist placed the end of the stethoscope on top of Conner’s head and closed his eyes.

“I’ve never seen a doctor do that before—listen over the top of the head, I mean. Do you hear something up there?”

“I’m just being thorough, Mr. Golden. If there’s an abnormal blood vessel or increased pressure inside the skull, sometimes we can hear a telltale sound.”

“Well, did you hear anything?” Sam and I exchanged a worried glance.

“No, and that’s normal. I shouldn’t hear anything.”

This examination was turning out to be quite a performance. My doctor never did any of these things.

He told Conner to lie down on his back. Then, he quickly moved his hands over Conner’s belly as Dr. Choy had done, stopping here and there, pressing softly and moving his hands again. Conner looked uncomfortable once or twice, then erupted into giggles. “That tickles!”

“If an abdominal organ is enlarged, that could be a clue of a neurological-associated disease. Conner is normal.” He pulled out the waistband on Conner’s undershorts and took a quick look at his privates. “No evidence of a developmental or genetic disturbance here. Okay, you can go ahead and sit up now, Conner.”

The neurologist walked over to a shelf and picked up a dark vial. He shook it a couple of times, unscrewed the cap and sniffed. He returned to Conner, who was swinging his dangling legs over the edge of the exam table. Our boy appeared quite comfortable being the center of attention.

The neurologist gently pressed Conner’s left nostril closed and waved his other hand with the open vial under his right nostril. “Can you smell this?”

Conner jerked his head back and contorted his face. “Ahhhh! Nooooo!” He covered his nose and mouth with his hands.

“No, Conner. You don’t have to do that,” Dr. O’Rourke reassured him. “This one’s a good smell. Can you tell me what it is?”

Cautiously, Conner bent forward and took another sniff. Before he could answer, Dr. O’Rourke repeated, “Can you smell that?”

“Yes.”

He tested the other nostril.

“It’s good,” Conner pressed. “Is it gum?”

The neurologist turned around and held the vial under my nose. I sniffed. “It smells like something, uh…is it, uh, some spice? No. Cloves! It’s cloves.”

“Right! That’s what it is.” Then he placed it under Sam’s nose.

“Yeah. It smells good. You’re right, son. It did smell like chewing gum.”

The neurologist replaced the cap and placed the vial back on the shelf. Then he picked up a handheld eye chart. Conner tested twenty-twenty in each eye.

“Good job. Now, keep your right eye closed and look into my eye.”

The doctor stood three feet in front of Conner. Dr. O’Rourke closed his own left eye and pointed to his open right eye. “Keep looking right here in my eye,” he instructed. The neurologist stretched out both of his hands to the sides. “Look only into my eye, Conner. I want to out find how well you can see out of all of the corners of your left eye.” Dr. O’Rourke wiggled a finger off to the side and had Conner say “now” when he saw the movement.

After the exam the doctor explained, “You did great, Conner! The fact that he sees my fingers move when they’re off to the sides means that the visual nerve tracts between Conner’s eyeballs and the visual cortex at the back of his brain are working well. All of that function takes up a lot of space in the brain. My visual field testing suggests that there are no hidden abnormalities where these pathways are. That’s very important.”

I sat back and shook my head. My mind churned with his explanation and trying to visualize what he was talking about. I had never seen a neurologist at work, and I was so proud of Conner’s mature cooperation.

“He’s doing great, Sandra!” Sam whispered.

The neurologist switched off the overhead lights and lifted a cylindrical instrument off its perch on the wall behind Conner. “You’re doing very well. Now I am going to shine a light into your eyes so I can check the area where the retina and nerves are. Keep looking straight ahead and try not to move your eyes. Just stare at the X on that wall. Keep looking at it even if my head gets in the way.”

The doctor aimed a beam of light at Conner’s right pupil and moved within a couple inches from our son’s face. As Dr. O’Rourke peered through the instrument, he told us he could see where the optic nerve entered the back of Conner’s eye and the little veins pulsating around it. Then he examined the other eye. “There’s no sign of abnormal pressure inside Conner’s head,” he announced and replaced the cylindrical device on its wall holder.

“That’s a relief,” I sighed. Sam and I looked at each other. We chuckled. Conner’s face had a quizzical expression, but he smiled, too.

 

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.

 

 

Blog #170: CAN YOU PREVENT YOUR SEIZURES?

 

     You can if you are among the 50% of epilepsy patients who are on the “right anti-convulsant at the right dosage.” You and your neurologist will know this is the right anti-convulsant for you because your seizures stop while taking your prescription. It’s trial and error. ¹

 

     Unfortunately, the other patients in the epilepsy population will continue to experience seizures, some very infrequently and others almost daily. These groups find their seizures do not disappear.

 

     Epilepsy surgery, no matter how drastic this sounds to you, in selected patients is very safe and can be curative. A pertinent blog on this topic is on this link: https://lancefogan.blogspot.com/2017/12/blog-89-surgical-removal-of-seizure.html In addition, the GAMMA KNIFE offers hope: http://lancefogan.blogspot.com/2024/01/blog-162-gammaknife-is-focused.html?m=1

 

     How to lower your risk of more seizures? You have heard this guidance from your neurologist/physician repeatedly: “Are you taking your medication as directed?” You all know what is important but too often our patients don’t follow our recommendations. Especially our youthful patients. Life interferes: “I got sick with a high fever or I forgot my pills or I traveled and left the pills at home or I drank too much alcohol or I didn’t sleep and etc.”

 

     Keep a seizure journal to keep track of seizures. Is there a discernable pattern: not enough sleep, another illness, menstruation, stress, recreational drugs, beginning a new medication from another physician that could have an effect on your epilepsy?

 

     Side effects can discourage taking your medication regularly. Reporting these side effects to your neurologist can help the doctor work with you to adjust dosages or change the medication to another effective one if the side effects are intolerable.

 

     Consider a pill-dispensing container that will separate the day’s dosages to discourage forgetting or taking more than prescribed any one day. Carry your physician’s contact information with you if you run out of meds.

 

     Always wear a bicycle helmet when bicycling, avoid bright flickering lights if they precipitate your seizures as they often do in some people. Do not drive a car until your neurologist clears you and consults with the Department of Vehicles.

 

1)     Richardson G. How Can People with Epilepsy Prevent Seizures? BrainandLife,org. June/July 2024. p37.

 

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.

 

 

 

Blog # 169: Balancing Reality with Hope in Epilepsy Treatment

 

 

 

Experience in our neurology clinics is that half of the epilepsy population in the United States, i.e. more than three million Americans (similar percent of the global population afflicted with epilepsy) can control their epilepsy. When the epilepsy is controlled with just the initial trial of anticonvulsant drugs (ACD) the long term prognosis for that person’s epilepsy is very good. We physicians start treatment with a commonly used ACD that from experience has shown effectiveness at the commonly used dosage. Side-effects such as drowsiness and laboratory tests of liver function, blood counts, etc. hopefully won’t be significant and the patient will adapt to the treatment quickly.

 

Edward Faught, MD, wrote on the reality and the hope in treatment.¹ As our patients are no doubt familiar, the course of epilepsy is variable. Experience shows that not achieving good control averages one-third of the epilepsy population, despite multiple different ACD treatments at various dosages. Identifying the presence or absence of brain lesions can still lead us astray as some patients do well despite significant abnormalities on scans. Younger age at onset, abnormal EEGs and very frequent seizures can adversely affect the prognosis.

 

According to the International League Against Epilepsy, drug resistant epilepsy is suggested when 2 ACDs appropriate for their type of epilepsy, as judged by your experienced neurologist, at tolerated dosages fail, then a third drug probably will also fail to control all seizures, too (10%).² However, other studies suggest hope. Schiller and Najjar noted that even after 2 to 5 ACDs had failed another drug could possibly produce seizure control. That was found in 16% of those patients deemed therapeutic failures.³

 

Keep in mind that a highly successful treatment that can cure epilepsy is brain surgery. In highly selected patients studied to rule out adverse side effects that would result from surgery, these procedures are safe. Post surgery life can be normal. Refer to my previous surgery-related blogs #155 (Successful surgery with robot assistant:  https://lancefogan.blogspot.com/2017/12/blog-89-surgical-removal-of-seizure.html), # 145 (Epilepsy patient passes driving test after brain surgery for poorly controlled epilepsy https://lancefogan.blogspot.com/2022/08/blog-145-epilepsy-patient-passes.html), #121 (…Epilepsy surgery is safe.  https://lancefogan.blogspot.com/2020/08/blog-121-if-your-seizures-arent.html).

 

In conclusion we should keep in mind that there is always hope in epilepsy therapy.          

 

1.     Faught E. Balancing reality with hope in epilepsy therapy. Neurology 2018;91: p989-990.

2.     Kwan P, Arzimanoglou A, Berg AT, et.al. Definition of Drug-Resistant Epilepsy Epilepsia 2010; 51: 1069-1077.

3.     Schiller Y, Najjar Y. Quantifying the response to antiepileptic drugs: effect of past treatment history. Neurology 2008; 70: 54-65.

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.

 

 

Blog #168: Suicidality ˗˗˗ Epilepsy

 

 

 

H. M. Clary and F. Gilliam addressed this topic in a Neurology publication.¹ People with epilepsy are prone to depression and anxiety. This is not news for our friends afflicted with seizures. People with epilepsy have a 22% higher rate of epilepsy than the general population.²

The risk of suicidality is highest shortly after the onset of epilepsy. The International League Against Epilepsy practice recommendation calls for neurologists to identify and manage depression and anxiety in their patients at every clinic visit.

 

Mood and anxiety diagnoses and suicidality among 347 adults with newly diagnosed focal epilepsy diagnoses were evaluated from the multicenter Human Epilepsy Project. An analysis revealed a high prevalence of psychiatric diagnoses that may go undetected: bipolar disorder, panic disorder, and agoraphobia stood out. There were strong associations of these diagnoses with suicidality, no different from those with established epilepsy.³  

 

What is Suicidality? The American Psychological Association defines suicidality as “the risk of suicide, usually indicated by suicidal ideation or intent, especially as evident in the presence of a well-elaborated suicidal plan.” It also to includes suicidal thoughts, plans, gestures, or attempts.

 

Bipolar disorder was more common than major depressive disorder. Sixteen percent had this diagnosis. Panic disorder was nearly as common as generalized anxiety, present in 11.5% of all participants. Nearly 39% had a mood or anxiety disorder and more than one-third of these had suicidality.

 

This overall assessment has implications for the clinical care of people with epilepsy as newly diagnosed focal epilepsy and established epilepsy may have suicide risk associated with psychiatric diagnoses not routinely screened for in epilepsy clinics. This knowledge elevates the need to better detect bipolar disorder, panic disorder and agoraphobia in our clinics.

 

Do not hesitate to consult with your physicians and caregivers if you, the patient, or the patient within your circle exhibits suicidal thoughts/actions. Do not fear that if you query the patient of possible suicidality thinking your mentioning the topic could be harmful. No, it’s almost always welcomed and helpful. As always, I recommend significant others of the patient accompany the patient to the clinic appointment. Much useful information often comes to light.

1.     Clary H.M., Gilliam F. Suicidality in Epilepsy. Neurology. 2023: Vol 100; No. 11, p 499-500.

2.     Tian N, Cui W, Zack M et.al. Suicide among people with epilepsy: a population-based analysis of data from the U.S. National Violent Death Reporting System, 17 states 2003-2011. Epilepsy Behav. 2016, 61:210-217.

3.     Kanner A., Saporta A., Kim D, et.al. Mood and Anxiety Disorders and Suicidality in Patients with Newly Diagnosed Focal Epilepsy. Neurology. 2023: vol 100; No. 11 p 508-509.

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.

 

Blog # 167: WHAT ABOUT NON-EPILEPTIC SEIZURES, THE PSYCHOGENIC, CONVERSION AND SOMATIC SYMPTOM DISORDERS?

 

Neurologists have long been aware of fake seizures. People would fall and shake and even lose control of urine. Called pseudoseizures or psychogenic nonepileptic seizures, they can be involuntary due to psychological disturbances. Frightening to witness as family and observers can attest. Yet the patient can still bite and lacerate lips and tongue and be incontinent of urine and bowel despite the EEG brain waves remaining normal.  Pseudoseizure can also be voluntary-malingered faked seizures of which the patient is very aware. These can serve some practical purpose in the person’s life e.g. avoiding stressful situations. These pseudoseizures occur in up to a third of patients evaluated in epilepsy clinics. One-third of patients who suffer from true epilepsy have additional pseudoseizures typically occurring during Their psychogenic nonepileptic seizures tend to occur when other people are present and during times of heightened emotional stress when secondary gain is available. Patients exhibiting feigned, or pseudoseizures, tend to have significant emotional problems. Schizophrenia, hysteria and hypochondriasis are common diagnoses.

 

Veterans with psychogenic nonepileptic seizures tend to have higher rates of anxiety, post-traumatic stress disorder and chronic pain, as compared with veterans with true epileptic seizures. Civilians with psychogenic nonepileptic seizures usually attribute their seizures to a past head injury, usually mild ones.

 

Selim Benbadis, MD reviewed this topic in Neurology 2019;92: 311-312.¹ Psychogenic nonepileptic seizures (PNES) are so very common in epilepsy centers in the U.S. that they account for 30-40 percent of referrals.²

 

Treatment results of pseudoseizures are not encouraging. Adherence to psychotherapy and cognitive behavioral therapy was poor. Minorities and victims of abuse tend not to adhere to these therapies, but a better outcome is seen if they do adhere over time.

 

Anticonvulsant medications are usually disappointing. Convincing psychiatrists/psychologists that their patients are suffering pseudoseizures and not true epilepsy by neurologists can be difficult. Combined psychological and organic neurological on-going cooperative care can lead to success.

 

 

1)    Benbadis SR. Psychogenic noonepileptic seizures, conversion, and somaic symptom disorders. Neurology 2019;92: 311-312.

2)    Benbadis SR. The Problem of psychogenic symptoms in the psychiatric community in denial? Epilepsy Behav 2005;6:9-14.

 

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.

 

 

Blog #166: POST-TRAUMATIC EPILEPSY IS ASSOCIATED WITH HIGHER RISK FOR DEMENTIA

 

 

 

 

As I have written in earlier monthly blogs, most people are surprised to learn that the commonest onset of epilepsy is in the older age-group and not in the pediatric population Why? We are living longer.

 

The epilepsy population is one percent of all people. In only half of these people can a cause for their epilepsy be identified. In the other half no cause can be found, in other words, these people have idiopathic epilepsy. In those for whom a cause can be identified, they have what is called symptomatic epilepsy. Usually, the cause is a structural abnormality in the brain associated with scars from trauma, scars from strokes, brain tumors, brain infections, abnormal blood vessels etc.

 

This blog highlights a summary edited by Susan Kreimer in the Neurology Today April 4, 2024, issue. It addresses the higher incidence of dementia in those with post-traumatic epilepsy¹. Post-traumatic epilepsy (PTE) is associated over a 25-year follow-up of developing dementia compared with epilepsy without a history of head trauma. A combination of epilepsy and head injury places the person at an increased risk of developing dementia.

 

Although some patients experiencing significant head injury are placed on anticonvulsant medications even before a seizure occurs, usually for short periods, as seizure prophylaxis, this has not been found to alter the risk of eventually developing PTE. Even mild traumatic brain injury can result in PTE up to a year after the head injury.

 

Researchers collected 12,558 individuals aged 45-64. The average age at baseline was 54 years. Nearly 58% were female and 28% were Black. Of this group 14.4 reported past head injury, 5.1% had seizure/epilepsy and 1.2 % had PTE. After follow-up spanning a median of 25 years, 19.9 of the participants developed dementia. Dementia risk factors may vary among population subgroups. The researchers adjusted for vascular and genetic risk factors.

 

Approximately 5-8% of the American population over 65 has dementia. Neurologists are encouraged to have a lower threshold to suspect cognitive impairment and dementia in their patients with PTE. Screen the patients themselves rather than rely on reports of caregivers to identify such patients for greater diagnostic accuracy. Have them undergo neuropsychological testing to confirm dementia if it appears.

 

We conclude that being aware of this group of PTE patients and of assessing them periodically for their higher risk of developing dementia can lead to better health outcomes.

 

 

1)     Schneider KCA, Law CA, Gottesman RF et. al.  Post-traumatic Epilepsy and dementia risk. JAMA Neurol 2024; Epub 2024 Feb 26

 

 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.

Blog # 165: COMMUNICATIONS WITH YOUR EPILEPSY DOCTOR

     

     You understand that your decisions for your epilepsy care are critical to the quality of your life. A study was published examining in-office patient-neurologist conversations that focus on identifying your type of epilepsy, sharing decisions about your care and continuing plans for your condition.

     A study of transcripts and audio recordings of conversations between patients and neurologists were analyzed focusing on epilepsy diagnosis, treatments, and prognostic considerations. The strategies for eliciting this information were assessed for strategies of information elicitation, word-level information, identification of topics discussed, quantification of questions probed, and types of questions asked.1

     Neurologist-patient interactions were analyzed in the United States, in Spain and in Germany. Neurologists tended to utilize event-based language. They referred to seizures in patient-friendly vocabulary. In the United States the term “epilepsy” tended to be avoided. This is cultura-based like Americans avoiding saying someone died. Rather, we say they “passed away.”

    In all three countries it was the neurologist who were unilaterally responsible for the treatment decision and choice of medication. A team effort is sometimes appropriate in medication decisions. When new medicines were described neurologists most often discussed potential side effects but did not review potential benefits. “Seizure control” rarely was defined. Patients were not asked what seizure control meant to them. Did I mean absolutely seizure-free or a very infrequent seizure may be acceptable to be “free” of seizures because “My last seizure was 8 months ago, or a year ago”. I would not consider this to be seizure-free.

     This paper identified opportunities related to vocabulary, decision making, and treatment goal setting. All these facets can improve communication about epilepsy.

     I recommend that you as the patient bring along your significant other to attend your meetings with your neurologist. That person should participate in all the discussions and ask pertinent questions along with you. Certainly, “two or more heads are better than one” in your doctor’s office. When I was in practice, I would often create the scenario after complex discussions I had with the patient who had come alone, “So, when you get home and your wife/ husband asks, “What did the doctor say?” I often heard the patient respond, “Nothing” or “nothing new” or something completely off the mark.

     I urge you all to bring someone along to be in the office/treatment room, if appropriate, whenever you visit a physician/clinic. You’re bound to get more for “your buck.” 

1) Stern JM, Cendes F, Gilliam F, et.al. Neurologist-Patient communication about epilepsy in the Unites States, Spain, and Germany. Neurology Clinical Practice. 2018; vol 8 (2), pg 93-101. 

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.