Online Health Chat with Imad Najm, MD, and Badih Adada, MD

November 17, 2014

Description

Cleveland Clinic celebrated Epilepsy Awareness Month throughout the month of November. Did you know that epilepsy affects an estimated 2.3 million adults and 450,000 children in the United States? If you or a loved one has been diagnosed with epilepsy and are looking for reliable information, Cleveland Clinic’s Epilepsy Center offers many free resources to help you get the facts and stay up-to-date with groundbreaking treatment options. For more information, go to clevelandclinic.org/epilepsycenter.

Epilepsy is one of the most common neurological disorders in the United States, affecting approximately 2.5 million Americans of all ages and backgrounds. Remarkable advances in the diagnosis and treatment of epilepsy have been made in recent years. The success of epilepsy surgery is measured in terms of the operation’s impact on seizure control and improvement in quality of life. Successful surgery eliminates seizures in many patients. For others, seizure frequency is markedly reduced.

Cleveland Clinic has one of the largest, most comprehensive programs in the world for the evaluation and medical and surgical treatment of epilepsy in children and adults. The Cleveland Clinic Epilepsy Center is committed to delivering world-class care for patients with epilepsy by providing excellent clinical management and the use of state of-the-art diagnostic and therapeutic techniques and approaches. We perform clinical and translational research to improve the knowledge and treatment of epilepsy, and strive to train world-class academic epileptologists and clinical neurophysiologists.


About the Speakers

Imad Najm, MD, is Director of Cleveland Clinic's Epilepsy Center at the Cleveland Clinic Neurological Institute, Division of Neurosciences. Dr. Najm is board certified in adult neurology with added qualifications in clinical neurophysiology and in epilepsy. He completed his fellowship in epilepsy after a residency in neurology at Cleveland Clinic. Dr. Najm completed his internship at Sacre Coeur Hospital after medical school at Saint Joseph University Faculty of Medicine in Beirut, Lebanon. Dr. Najm’s specialty interests include medical and surgical management of adult and geriatric epilepsy, malformations of cortical dysplasia, basic mechanisms of epilepsy and post-traumatic epilepsy. He has published more than 160 peer-reviewed papers and conducted numerous research projects on the topic of mechanisms of epilepsy and malformations of cortical dysplasia.

Badih Adada, MD, is a neurosurgeon with the Department of Neurosurgery at Cleveland Clinic Florida. He received his medical degree from the University of Montreal in Montreal, Canada. Dr. Adada went on to complete a general surgery and neurosurgery residency at the University of Montreal, Notre Dame Hospital and a skull base surgery fellowship at the University of Arkansas for Medical Sciences in Little Rock. Dr. Adada is certified by the American Board of Neurological Surgery and the Royal College of Physicians and Surgeons of Canada. He is a member of the American Association of Neurological Surgeons and the American Medical Association. His specialties include skull base and vascular neurosurgery, movement disorders and epilepsy surgery.

Let’s Chat About: Medical and Surgical Treatment Options for Epilepsy

Moderator: Let's get started with our questions...


Diagnosis and Discovery

michelle5: What is the best treatment option/success rate for left side, complex partial seizures? I am having seizures during the end of the sleep cycle. I am considering VNS (vagal nerve stimulation) or a NeuroPace® device. I am 25 years old, on three medications – Vimpat®, Keppra XR® and Trileptal® – with night seizures five to seven times a month, so not controlled, and I have side effects including memory loss, headaches, feeling tired all the time and feeling anxious.

Badih_Adada,_MD: It is important to determine what part of the left brain the seizures are coming from. This is usually best determined using a combination of tests including an MRI, a PET scan and an EEG that is recorded during seizures. Based on the origins of the seizures, we can then determine if surgery would be successful in your condition.

lkw: My son is 27 and has complex partial seizures. He has tried eight to 10 medications in the last six years and still has a seizure about every 10 days. His seizures start in the temporal lobe, in an area that our epileptologist said is used for learning new things and speech. We have therefore not considered surgery. Would you suggest an evaluation by the Cleveland Clinic?

Badih_Adada,_MD: Temporal lobe epilepsy is one of the most common forms of epilepsy and is generated by an area called the hippocampus, which is involved in memory and learning. Typically, this kind of epilepsy is most successfully treated with surgery. The surgical procedure for this kind of epilepsy is very safe; however, a thorough workup needs to be done at an epilepsy center.

colleent: I have been on two anti-convulsant medications for over a year and still have "breakthrough" seizures every few months. If I were to have an EEG done, can it guarantee that the source can be identified? I am 30 years old and have brain cancer and this is my only symptom.
 
Badih_Adada,_MD: An EEG can help determine where the seizures are coming from; however, sometimes more extensive testing needs to be done to really pinpoint the origin of the seizures. Those tests might include video EEG monitoring as well as a PET scan.

SBruce: My 25-year-old daughter has catamenial epilepsy. If both estrogen and progesterone pills have been tried and made seizures worse, what other options do you think might be effective for catamenial seizures? What would you suggest as an effective addition before/during/after her period to her regular seizure daily medications, Lamictal® (200 mg daily) and Zonegran® (200 mg twice a day). We tried Diamox®, but it just really zoned my daughter out. So far, we have not been able to control these monthly seizures with anything we have tried. Have you had more success with adding a new drug every day, or the additional drug during the period? Is there a newer option we could look into? Thank you!

Imad_Najm,_MD: It seems that your daughter’s seizures (although catamenial) have been difficult to control. The International League Against Epilepsy (ILAE) defines pharmaco-resistance as the failure of two or more medications to control the seizures. Unfortunately, a number of patients with catamenial epilepsy have no response to various types of hormonal treatments, with no clear predictors identified. At this point, I do suggest a thorough evaluation of your daughter’s epilepsy in a dedicated multidisciplinary epilepsy center to confirm the diagnosis of epilepsy, to understand if your daughter’s epilepsy is focal (arising from a particular area of the brain) and to assess if she may be a surgical candidate, as the main goal should be complete control of the seizures.

lamjav: Hi. My name is Lamjav. My dad has been suffering with epilepsy since he was young, and his symptoms are getting worse. He takes medicine twice every day in order to prevent seizures. He lives in Mongolia and he is 68 years old. Are there any treatments or surgical procedures to prevent them? If he has a surgery, what’s the chance he will recover from it? Some doctors said the surgery doesn’t help much with his symptoms.
 
Badih_Adada,_MD: If your dad is still having seizures despite trying two medications and has been on them for more than a year, then he might be a candidate for epilepsy surgery. To determine whether he would benefit from surgery, he would need to be evaluated by an epileptologist (a neurologist who specializes in epilepsy). And typically, a multitude of tests will be performed to determine which part of the brain is causing his seizures. Based on the results of those tests, a team of physicians will discuss his condition and determine if surgery will help control his epilepsy.

Imad_Najm,_MD: In order to comment on the options (medical or surgical), there is a need for an initial evaluation that consists of a video EEG recording to capture one or some of his seizures and a brain MRI scan. Pending the results of these tests, a determination of the type of treatment will be discussed. Epilepsy surgery is a safe surgical intervention when done at an epilepsy center by trained and experienced neurosurgeons. The evaluation is needed before making a statement about the benefit of surgery. Insurance coverage is usually assessed by the hospital’s financial counselors.

Lmg93: If someone had a TBI (traumatic brain injury) 23 years ago from a car accident and is diagnosed with epilepsy now, would there be any surgical procedure to help them? They are taking 400 mg of carbamazepine three times a day. Thank you.
 
Badih_Adada,_MD: If medication has not been helping, then surgery might be an option. To determine whether they would benefit from it, a comprehensive evaluation needs to be done by an epileptologist. Based on the results of the evaluation, a determination is made to whether surgery is indicated

lindamc: My 39-year-old son is on four seizure medications following encephalitis at age 2 and continues to have about six seizures a month that we know about. His doctor has recommended we consider a vagal nerve stimulator. I would like your opinion on that and also the NeuroPace RNS system.

Badih_Adada,_MD: Before considering any surgical treatment, he should be evaluated thoroughly in the setting of an epilepsy surgery program. If his epilepsy is considered not to be amenable to resective surgery, then he would be considered for implanting either a vagal nerve stimulator or a NeuroPace device. Depending on the findings during the investigation, it will be determined whether he is a better candidate for VNS therapy or NeuroPace.


Specifics on Surgery

lindamc: What are the infection and bleeding risks relative to epilepsy surgery?

Badih_Adada,_MD: The risks of bleeding and infection in the context of epilepsy surgery are relatively low and are around 1 percent to 2 percent.

Faith43: I read something about a type of laser surgery being done for treatment of seizures. I believe it was in the Boston Children’s Hospital. Are you familiar with this at all?

Imad_Najm,_MD: Multiple centers in the US (including Cleveland Clinic Epilepsy Center) have been using laser therapy in some patients with epilepsy that can be localized to a well-defined area of the brain. The main principle is to first clearly identify the area of the brain that is causing the seizures. If the seizure focus is clearly identified, then laser therapy, as well as surgical removal of the lesion, should be considered.


VNS and NeuroPace

michelle5: Can you be a radiology technician after having a VNS or a NeuroPace put in? I am aware not to assist with MRIs.

Badih_Adada,_MD: Yes, you can have a vagal nerve stimulator or a NeuroPace and be a radiology technician dealing with x-rays and CT scans. In most cases, you would just need to stay away from MRI machines, although in some setups and under specific conditions, both devices can be exposed to MRIs. However, as a general rule, it is best to avoid MRIs.

Faith43: My son found out this summer that he is not a candidate for the brain resection surgery. What is the next step? He's on various medications that have mostly controlled the grand mal seizures, but still has the ones where he just blanks out for a bit.
 
Badih_Adada,_MD: Depending on the kind of seizures he has, he might be a candidate for a device called a NeuroPace. If he's not a candidate for this device, other alternatives might include a device called a vagal nerve stimulator.

mgeis: Would you recommend VNS? How many successful cases have you had?

Badih_Adada,_MD: Vagal nerve stimulation is usually recommended as a last alternative to treat epilepsy. We typically try to determine if patients are candidates for other surgical procedures. If they are not and/or medication has failed to control seizures, then placing a vagal nerve stimulator is considered. Typically, it helps in reducing the seizures frequency and intensity.

michelle5: If the NeuroPace does not work, what is the part of the skull that was removed replaced with after the device is removed?

Badih_Adada,_MD: Typically, the patient's own skull is left in place after the first surgery, so even if the near base has to be removed there should not be a skull defect.

lindamc: How do the NeuroPace and vagal nerve stimulators work?
 
Badih_Adada,_MD: They have different action mechanisms. The vagal nerve stimulator works by stimulating the nerve in the neck called the vagal nerve. By doing so, it changes the electrical pattern of the brain, reducing its susceptibility for producing and spreading seizures. The NeuroPace works differently. Electrodes are placed in the areas of the brain that are producing seizures. Those electrodes will sense any seizure activity and will stimulate the area to stop them from developing and spreading.

michelle5: What are most common side effects of NeuroPace, and how long has this treatment been available?

Badih_Adada,_MD: The main risks related to implanting the NeuroPace system are infection and bleeding. Those have been reported in 7 percent and 4 percent of implanted cases respectively.

lkw: I have heard of VNS but not NeuroPace. What is that?

Badih_Adada,_MD: NeuroPace is an implantable device that consists of an electrode placed in areas of the brain that are producing seizures. The electrode will sense any abnormal seizure activity, and then a device similar to a pacemaker will stimulate that area to stop the seizures from further developing and propagating.

lindamc: Are depth electrodes inserted for EEG to determine candidacy for NeuroPace and/or vagal nerve stimulator or just PET, scalp electrode EEG and MRI?

Badih_Adada,_MD: Typically, no invasive monitoring is required to determine whether a patient is a candidate for a vagal nerve stimulator. In determining if a patient is a candidate for the NeuroPace device, intracranial electrodes might be needed.

michelle5: I have had pre-operative testing done and am deciding between VNS or NeuroPace for left complex partial seizures. What are success rates for both options?

Imad_Najm,_MD: VNS success in controlling medically intractable seizures is less than 10 percent. With NeuroPace, early data suggests almost the same percentage of seizure control. My question to you is why surgical removal of the focus is not being considered, as it is the best option for the treatment of medically intractable epilepsy?

michelle5: After VNS or NeuroPace, do many patients decrease dosage of medications once seizures are controlled, thus decreasing side effects?
 
Imad_Najm,_MD:  The decrease in the number and/or doses of medications depend usually on the seizure control.

michelle5: Are there any side effects to NeuroPace, such as headaches? How long has this option been available? What is the success rate?

Imad_Najm,_MD: Headache may be a rare side effect. Success rate: see above.

Lkw: What is the success rate of the NeuroPace? How many patients become seizure-free?

Imad_Najm,_MD: Early data suggests success in controlling medically intractable seizures is less than 10 percent.


Medication Matters

Hoda: My 11-year-old daughter is having complex partial epilepsy seizures on Trileptal, Keppra and Depakene. She is still having episodes that are very mild but frequent, causing a change in the quality of her life. She is sleepy most of the day and tires easily. Her school work is deteriorating, as well as her memory. My neuro suggested changing the combination to withdraw Keppra and Trileptal and introduce lamotrigine. What do you think? Are there any new medications on the market? How can we help her to get her life back and control her seizures?

Badih_Adada,_MD: Patients who are still having seizures despite being on several medications should be evaluated for possible surgery, especially if they have been having seizures for more than a year.

Faith43: My 21-year-old son has been on various epilepsy medications. Lately, his seizures seem to be increasing in size and length of duration. How do I know that he is on the right medications? How safe is it to keep changing? How many different types are safe to take at the same time? He currently takes four different ones.

Badih_Adada,_MD: If he has been on medication for more than two years and his seizures are still not well-controlled, he needs to have an evaluation by an epileptologist to pinpoint where his seizures are originating from. If his seizures are focal, meaning that they originate from a very specific area of the brain, then he might do well with surgery.

loveitaly: I know that having a VNS implanted does not eliminate taking seizure medications. What about with the NeuroPace surgery? What is the percent of success in implanting the electrodes in the brain?

Badih_Adada,_MD: After implanting the NeuroPace device, you should still expect to be on antiepileptic medication. The NeuroPace device is designed to reduce the frequency and intensity of seizures. A significant number of patients will continue experiencing seizures even after implanting the device.

BRAINBEFRIED: I was in a coma from an auto accident in 1983 and was misdiagnosed. I have no money for such a trip or medical expenses. I keep hoping for a better life but have not found it. I am on medications that finally have the seizures under control but for how long, and what damage are they doing to me? I wanted a family and kids, but did not want to bring someone I loved into a life I was being shown, and doctors thinking all I wanted was money from the insurance company. I am hurting and lonely. Should I trust you?

Imad_Najm,_MD:  I am sorry to learn of your problems but happy to know that the medications are helping in seizure control. Anti-epileptic medications control seizures in around two thirds of patients with epilepsy. The choice of the right medications should not lead to brain damage.

ClevelandSCS: Our 17-year-old son had his first grand mal seizure August 6, 2014. Prior to that date, he had no seizures. In February 2012, he was diagnosed with a benign central neurocytoma tumor. It was resected, followed by six weeks of radiation at a proton beam clinic at Mass General in Boston that following August/September. The doctors think this grand mal seizure is related to scar tissue from the surgery. An EEG showed high spiking activity in R frontal lobe area (diagnosed as epilepsy). As a result, the doctors put him on 1500 mg Oxtellar (anti-seizure medication). The doctors say there is a good possibility of him "outgrowing" these seizures. Does this sound right? And how do you feel about Oxtellar? He's doing well, only showing some fatigue from the medications, no seizures to date.

Imad_Najm,_MD: Seizure medications control seizures in approximately two thirds of patients with epilepsy. (It seems that your son may be one of them.) The presence of a scar in the setting of a seizure and an abnormal EEG puts him at risk of seizure recurrence at this point if the medication is stopped. This does not mean that the treatment should not be revisited in the future. Oxtellar may be an appropriate medication for your son. My recommendation is that he continue the medication. If the side effect of fatigue continues and becomes disabling, the choice of the medication could be revisited, although the treatment with most effective antiepileptic medications is associated with some type of fatigue.

michelle5: Any new drugs out or going to be approved to control left complex partial seizures?

Imad_Najm,_MD: There are multiple medications in the “pipeline” for the treatment of epilepsy, but it is unknown if and when these medications will be approved in the US. In addition, it is very difficult to predict if any of the new medications will be effective in a large number of patients with medically intractable epilepsy. If the epilepsy is intractable, the current recommendation is for a surgical evaluation.

michelle5: What are some birth control pills that I can take with epilepsy? I know progesterone is good.

Imad_Najm,_MD: Check with your gynecologist about the type of birth control pills to use with high progesterone that may be appropriate for you.

Lkw: Are there any promising new medications or procedures on the horizon?

Imad_Najm,_MD:  There are multiple medications in the “pipeline” for the treatment of epilepsy, but it is unknown if and when these medications will be approved in the US. In addition, it is very difficult to predict if any of the new medications will be effective in a large number of patients with medically intractable epilepsy.

Mgeis: I am taking Junel FE as birth control. Is that OK to take if I have epilepsy? Could it trigger my seizures?

Imad_Najm,_MD: Check with your gynecologist about the type of birth control pills to use with high progesterone that may be appropriate for you.

twb213: What are your thoughts about Epidiolex® for the treatment of intractable epilepsy? Same question about medical marijuana? Are there any other new medications on the horizon that show promise for the treatment of intractable epilepsies?
 
Imad_Najm,_MD: Epidiolex is not currently approved in the US for the treatment of epilepsy. The same is true for medical marijuana. There are multiple medications in the “pipeline” for the treatment of epilepsy, but it is unknown if and when these medications will be approved in the US. In addition, it is very difficult to predict if any of the new medications will be effective in a large number of patients with medically intractable epilepsy. If the epilepsy is intractable, the current recommendation is for a surgical evaluation.


General Information

michelle5: Any new treatment for seizures caused by hypometabolism of glucose?

Imad_Najm,_MD: Not to my knowledge. The hypometabolism of glucose typically assessed by FDG PET scans usually is due to a decrease in the function in some particular areas of the brain.

michelle5: I have problems with memory. Are there any techniques to work with improving memory?

Imad_Najm,_MD: Control of the seizures and decrease in the number of medications used are the two most important parts in potentially improving memory. There are some cognitive interventions that may help.

erikap7:  What is your experience using CBD oil (cannabidiol oil) as an epilepsy treatment for adults and/or children? Please provide any relevant information including outcomes, dosages, short-term effects, long-term effects, etc.

Imad_Najm,_MD: We do not have any experience with CBD oil for the treatment of epilepsy.

ClevelandSCS: Do you know of any other triggers for seizures other than THC (marijuana), alcohol, sleep deprivation and dehydration?

Imad_Najm,_MD: Any physical and/or mental stressor can decrease the seizure threshold and may therefore increase the likelihood of seizure recurrence.


Closing

Moderator: That is all the time we have today for questions. If your question was not addressed during the chat, we will have the physicians respond. Thank you everyone for participating today; and thank you, Badih Adada, MD and Imad Najm, MD, for your insightful answers to our questions about epilepsy.
 
Badih_Adada,_MD: Goodbye. Thank you for joining us today.


For Appointments

We want to offer you a chance to follow-up with our specialists to get answers to your questions on epilepsy treatment options. To schedule a same-day consultation, please contact us toll-free at 866.588.2264 or by email at epilepsy@ccf.org.

To make an appointment for an evaluation with Dr. Najm or any of our Cleveland Clinic epileptologists in Cleveland, please call 866.588.2264. To learn more about Cleveland Clinic’s Epilepsy Center in Cleveland, visit us online at clevelandclinic.org/epilepsy.

To make an appointment for an evaluation with Dr. Adada or any of our Cleveland Clinic Florida epileptologists, please call 877.463.2010.To learn more about Cleveland Clinic Florida’s Epilepsy Center, visit us online at clevelandclinic.org/floridaepilepsy.

For More Information

On Cleveland Clinic

Cleveland Clinic Epilepsy Center is a leader in diagnosing, and medically and surgically treating epilepsy. Today, our program is considered one of the most comprehensive of its kind nationally and internationally, enriched by our multidisciplinary team approach; clinical expertise and experience; clinical and translational research; education and innovation.

Patients and families from across the country and around the world come to Cleveland Clinic’s Epilepsy Center to access our experience and expertise, which has yielded some of the best seizure-free outcomes worldwide.

Epilepsy Treatment Guides & Health Information

It is important to know as much as you can about epilepsy whether you are newly diagnosed or are experiencing recurrent seizures. At Cleveland Clinic’s Epilepsy Center, our team of specialists delivers advanced specialized care through innovative diagnostic and treatment options including medication and surgery. Download our free Epilepsy Patient and Surgery Guides to learn more about the latest treatment and management information at clevelandclinic.org/epilepsycenter.

http://my.clevelandclinic.org/services/neurological_institute/epilepsy/patient-education

For additional health information, visit clevelandclinic.org/health.

MyEpilepsy iPad® Tool

Cleveland Clinic now offers a free educational interactive iPad tool, MyEpilepsy that allows you and your physician to effectively manage your epilepsy. The interactive app gives you the ability to keep a daily record of your seizure activity, provide a record and reminder of all medications, manage appointments, track progress and access educational information on treatment options and how to manage seizures. Download MyEpilepsy to your iPad today at clevelandclinic.org/epilepsycenter.

Epilepsy Videos

Have questions about epilepsy? We’ve got answers. Check out our epilepsy videos at clevelandclinic.org/epilepsyvideos. Our experts help answer commonly asked questions about epilepsy — from diagnostics to treatment options including surgery.

Clinical Trials

For additional information about clinical trials and research innovations at Cleveland Clinic: http://my.clevelandclinic.org/services/neurological_institute/epilepsy/research-innovations.

For additional information about clinical trials: ClinicalTrials.gov.

On Your Health

MyChart® is a secure, online health management tool that connects Cleveland Clinic patients with their personalized health information. All you need is access to a computer. For more information about MyChart®, call toll-free at 866.915.3383 or send an email to: mychartsupport@ccf.org.
 
A remote second opinion may also be requested from Cleveland Clinic through the secure Cleveland Clinic MyConsult® website. To request a remote second opinion, visit eclevelandclinic.org/myConsult.


Contact Information

If you need more information, click here to Live Chat with a health educator (click on Questions and then Live Chat) or call the Center for Consumer Health Information at 216.444.3771 or toll-free at 800.223.2272, ext. 43771, to speak with a Health Educator.
 
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