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.

Blog #164: MEMORY: SUBJECTIVE COMPLAINTS VS ACTUAL OBJECTIVE DEFICITS IN EPILEPSY

 

 

Who amongst us doesn’t find fault with our own memory? But are memory concerns and complaints due to actual brain pathology or are they within the normal age-spectrum? Over half of patients with epilepsy complain of impaired memory. Are they actual memory deficits, though? We know that anticonvulsant medications commonly have deleterious effects on memory as can depression, other medications and illnesses.

Exploring memory researchers recruited patients with Temporal Lobe Epilepsy (TLE).¹ TLE diagnosis was based on abnormal EEG and clinically typical seizures. Our temporal lobes are where memory is generated and preserved. Damage there does affect memory whereas damage to other parts of the brain does not have as serious effects on memory. Generalized epilepsy, which does not focus on temporal lobes, seems to have less deleterious effects on memory as compared with TLE.

Researchers recruited 47 patients with TLE. Age and sex-matched 35 healthy controls were similarly studied. Self-evaluation memory questionnaires were used to assess the magnitude of memory complaints. All were then studied with neuropsychological examinations. A surprise recall testing 3 weeks later occurred. No significant differences on standard testing were found between the performance of patients and controls.

The two groups were then brought back three weeks later. The surprise recall tests 3 weeks later revealed significant differences between the two groups. They were assessed if they recalled simple events that occurred during that original testing 3 weeks before. For example, was there a memory of a water glass being offered? Did the examiner leave the room and change what they wore? Did the subject recall the phone ringing twice during the visit, or recall being asked to retrieve a questionnaire from a shelf, etc.? In the absence of spontaneous recall without cues, cues were then provided by the researchers followed by recognition questions such as “did the phone ring once or twice? Were you offered water etc.? Scores were generated.

The standard neuropsychological battery we have relied on to test cognition and memory has some blind spots; an adequate assessment of autobiographical memory and our “long term” memory assessments occur 10 to 30 minutes after the information is encoded. Traditionally these tests haven’t been performed. It is these blind spots that have been addressed in this study. People with subjective memory complaints that were corroborated by family members had normal performance on standard neuropsychological testing. But scores 3 weeks later were significantly lower in the epilepsy group.

This information is another reminder that we need to listen closely to our patients’ complaints, and that our gold standards need to be updated as our understanding of memory evolves.

1)     Lemesle B, Barbeau EJ, Milongo Rigal E, et al. Hidden objective memory deficits behind subjective memory complaints in patients with temporal lobe epilepsy. Neurology. 2022;98(8): E818-E828

 

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 #163 February: ALZHEIMER'S DISEASE AND EPILEPSY

Articles are ubiquitous in the media on Alzheimer's Disease (AD). It is estimated that Alzheimer's currently affects 5 million Americans. In 2050 ten percent of us will be affected according to Harvard.edu.

Increasing knowledge based on multiple studies (meta-analysis) shows a link between AD and epilepsy. People with epilepsy had a 1.8-fold increased risk of AD. Patients with AD had a 3.1- fold higher risk of epilepsy, both generalized and focal seizures with impaired awareness (complex partial epileptic seizures). Temporal lobe epilepsy and AD share some pathologic features such as both show hippocampal sclerosis in the temporal lobe tip. The study populations to confirm this information is interesting but it is inconclusive due to the relatively small populations in the studies.1 

Increased chemical amyloid compounds are found in the brains of patients with AD. Elderly people who may be intellectually normal all have some amyloid in their brains, too, but this chemical compound is more prolific in AD dementia. It appears that amyloid pathology increases the propensity to generalized seizures. There is an association between AD and focal seizures, too, with hippocampal sclerosis (scarring) in the temporal lobes.

1. Fang Y, Xiaoli S, Jial W, et. al. Alzheimer Disease and Epilepsy. Neurology;2023 101:e 399-e409. Doi:10.1212 

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 # 162: The Gamma Knife is Focused Radiation to Treat Epilepsy Without Surgery

               My followers should find this 162^nd of my monthly educational blogs of interest for your own epilepsy and for those whose lives are touched by your epilepsy.

If your epilepsy is drug resistant this is a potential treatment that could benefit you and it is non-surgical. Gamma knife surgery, also known as stereotactic radiotherapy, is not actual surgery. No cutting nor opening of the skull is involved. Radiofrequency beams are painlessly concentrated on the brain area identified as the cause of your epilepsy. This technique originated in the 1950’s. The Gamma Knife can minimize damage to nearby healthy brain tissue. Your seizure frequency may be lessened; your epilepsy may even be cured without opening the skull or damaging normal brain tissue.¹  

The Gamma Knife® is a powerful tool that enables the neurosurgeon to focus many weak beams of radiation energy on any location inside the brain, especially useful to treat areas difficult, or dangerous, to expose surgically. By focusing these intersecting individually weak beams together these many beams can break down tissue. The radiosurgery team can target a region of the brain while limiting damage to surrounding, normal brain tissue. While more commonly used to treat children with brain tumors and collections of abnormal blood vessels arteriovenous malformations, the Gamma Knife is also used to treat some patients with epilepsy.

 

The painless treatment effect of Gamma Knife radiosurgery occurs slowly, depending on these conditions that are often associated epilepsy:

• Benign tumors. Gamma Knife radiosurgery keeps tumor cells from reproducing. The tumor may shrink over a period of months to years. But the main goal of Gamma Knife radiosurgery for noncancerous tumors is to prevent any future tumor growth.
• Malignant tumors. Cancerous tumors may shrink quickly, often within a few months.
• Arteriovenous malformations (AVMs). The radiation therapy causes the atypical blood vessels of brain AVMs to thicken and close off. This process may take two years or more.
• Epilepsy foci. Half of epilepsy patients lack identifiable brain tissue abnormalities or scars which EEGs and brain scans identify where seizures begin. The radiation therapy can be useful in eliminating these abnormal areas.

Consider discussing Gamma Knife treatment on a brain epileptic focus your medical team has identified causing your still poorly controlled seizures with your neurologist.

1.      Lunsford LD, Kondziolka D, Flickinger JC, et al: Stereotactic radiosurgery for arteriovenous malformations of the brain. J Neurosurg 75:512-524, 1991

 

 

 

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.