Online Health Chat with Dr. Lara Jehi
November 22, 2010
Cleveland_Clinic_Host: What does success mean for patients treated for their epilepsy? What does seizure freedom after epilepsy surgery mean?
Part of our commitment to the comprehensive care of patients with epilepsy, and our belief that the disease burden extends beyond a “seizure count” we are integrating various measures of overall health with every patient visit. The same detailed assessment is provided to both the large group of patients treated with anti-epileptic medications alone and to the smaller group with refractory seizures who undergo epilepsy surgery.
The large number of epilepsy surgeries performed at Cleveland Clinic and the long duration of follow-up available on our patients, allow us to accurately analyze our results and determine how well patients respond to surgery. Using modern statistical methods of analysis, the Epilepsy Center group was able to determine that in the group of patients evaluated, 78% were completely seizure-free two years following temporal lobectomy, 66% were seizure-free five years following surgery and more than 50% remained seizure-free more than a decade later.
Some of the most important outcomes that the Epilepsy Team focuses on include, but are not limited to: improvement in quality of life in adult and pediatric epilepsy patients treated with medications or following surgery, seizure severity in adult and pediatric patients treated with medications, or following surgery, long-term seizure freedom following epilepsy surgery, etc.
Lara Jehi, MD is board-certified in neurology and clinical neurophysiology with many clinical interests, including medical treatment of epilepsy, epilepsy surgery and outcome analysis. She is currently leading efforts to broaden the spectrum of epilepsy management at the Cleveland Clinic Epilepsy Center to include social, psychological, and quality of life aspects. She is also focused on research pertaining to appropriate selection of epilepsy surgery patients and defining predictors of seizure outcome following surgery.
To make an appointment with Lara Jehi, MD or any of the other specialists in our Epilepsy Center at Cleveland Clinic, please call 216. 636.5860 or call toll-free at 866.588.2264. You can also visit us online at www.clevelandclinic.org/epilepsy.
Cleveland_Clinic_Host: Welcome to our Online Health Chat with Dr. Lara Jehi. We are thrilled to have her here today for this chat. Let’s begin with the questions.
Measuring Outcomes of Epilepsy Treatment
marf: I noticed it was stated in notice that more than 50% remained seizure free more than a decade later, that seem like a high % that it comes back for others.
Dr__Lara_Jehi: It is a percentage that is higher than what we want it to be and a lot of research in our program and elsewhere is working to figure out why. It is important to keep the following, though, in mind. First, less than 5% of these patients would have been seizure free more than a decade later had they not done the surgery. Without surgery, these patients are also running the risk of sudden death (SUDEP) an entity that is 20 times higher in patients with uncontrolled seizures. Even with a 50% chance of becoming seizure-free, these patients are much better off with surgery.
Also, patients who have a seizure recurrence beyond the first year or two of surgery, are usually easier to treat and control with minor medication adjustments. In our analysis of the data, we considered these patients as indeed having had a seizure recurrence, even though they may have become seizure free again. So, taking all of this into account, we know that the percent of patients who are significantly helped with surgery is closer to the 70-80% range.
caringperson: If you have seizure later on in life my concern is why does this happen?. If you are older what is the statistics that seizure med can stop your seizure activity. The reason one has brain surgery like myself was to stop seizures Thank you.
Dr__Lara_Jehi: Seizures can start at any point in time during somebody's life. Actually, older individuals are at higher risk than middle age people of developing seizures and the risk is about 4 times higher. This happens for a variety of reasons, including a higher risk of stroke or brain tumor. As a normal part of the aging process, our brain loses some cells. Sometimes this can be significant enough to cause epilepsy. Regardless of the cause, antiepileptic medications usually are very successful at lower doses in controlling seizures in the elderly (three out of four epilepsy patients are controlled with medications). But if seizures are not controlled despite adequate trials of 2 or 3 antiepileptic medications, then surgery is the right thing to do. The chances of a successful surgery are in the 60-70% range versus less than 5% success with medications in this intractable group.
EDDIE36: Do you see personality changes post surgery, after normal recovery time, and if so do they resolve after time?
Dr__Lara_Jehi: We do occasionally see personality changes after surgery. Not all of these changes are necessarily negative. Some of the positive changes may be a newfound sense of confidence, a willingness to take more risks and a higher sense of responsibility. Some of the negative changes may be difficulties with memory or difficulties of adjusting to the demands of a 'normal' life.
Neuropsychiatric testing performed before surgery as well as a detailed psychiatric evaluation before surgery may help in predicting patients at a higher risk. This can occur as a result of medication changes, adjustments and changes in lifestyle and certainly as a result of removing a part of the brain that was involved with seizures. Usually, these changes improve over time, but may not necessarily resolve completely.
Social Work Services here at Cleveland Clinic and an intensive behavioral program are available to assist patients and their family cope with the demands of surgery.
Strumming: What are outcomes based on – number of seizures, frequency, duration, severity?
Dr__Lara_Jehi: Outcomes assessment following any treatment (medications or surgery) is based in our center on a judgment of all of the following: seizure frequency, severity, functional status of the patient (going to school, work, driving, etc.), mood, and several other factors. The goal is to bring the patient back to a state of normalcy where they can go on with their life: seizure-free with no side effects. You can have a more detailed answer of what our outcomes at the Cleveland Clinic epilepsy center are based on by reviewing our outcomes book
mollie55: As a person gets older does the success rate go down?
Dr__Lara_Jehi: Older age is not a contraindication for surgery, and does not reduce the chances of success. What may be more relevant is the duration of epilepsy itself with some studies suggesting that the longer a patient goes on having seizures before undergoing surgery, the lower the chances of a successful surgery become. For example, a 60 year old patient who has only had seizures for 5 years and a 40 year old patient who has also had seizures for only 5 years may have very similar chances of success, while a younger patient who has been seizing for 20 years before having surgery will have lower chances of success.
AEDs (Anti epileptic drug) Treatment
EDDIE36: Is there a connection between some AED’s (antiepileptic drugs) and memory issues?
Dr__Lara_Jehi: There is certainly a connection. Some antiepileptic medications have higher risks than others in causing memory side effects (slower thinking, memory loss, etc.). It is difficult, however, to attribute all memory problems in a patient with epilepsy to the medications they are on. It is important to take into account the frequency of the seizures and the severity of the epilepsy itself, as these can also cause memory issues.
We recommend a very close and open relationship between the patient and their treating physician to discuss the various available medication options so that issues related to possible side effects can be sorted through.
mollie55: After surgery how is the determination made to reduce medications? How quick can this be done?
Dr__Lara_Jehi: There is currently no consensus as to how to manage medications after surgery. Usually what we do is we leave the medications unchanged for at least 6 months to a year after surgery. Then, we perform certain tests to make sure that there is no epileptic brain tissue left behind. These tests include a brain MRI and a routine EEG. If both of these tests do not show evidence of epilepsy and the patient continues to be seizure free for 1-2 years, then medications are gradually tapered down but usually not discontinued altogether. Up to 20% of adult patients and an even higher percentage of pediatric patients do successfully stop all medications after surgery. This process needs, however, to be guided by your physician to avoid side effects and risks of abrupt discontinuation of seizure meds.
marf: What is your opinion of name brand drugs verses generic?
Dr__Lara_Jehi: This is a very controversial issue and depends on several factors, including the type of the drug, whether the patient is seizure-free on treatment or not, and whether the patient has already been on the drug for a while versus starting it as a new medication. In summary, the general recommendation is to avoid switching from brand name to generic in the following situations: 1)- if the patient is seizure-free on brand; 2)- if the switch involves one of the “older generation” antiepileptic medications; or 3)- if the patient is very sensitive (high risk of breakthrough seizures or medication side effects) with small dose changes and blood level variation. The American Academy of Neurology recommends in a position statement that all switches from brand to generic should be done with the approval of the treating neurologist.
mollie55: Is there a connection between some AEDs and motor skills?
Dr__Lara_Jehi: High levels of AEDs can cause dizziness and impair motor coordination, leading to unsteadiness and sometimes tremor (shaking or trembling of the hands with fine activities) but not usually to any muscle weakness.
Testing for Surgery
mollie55: I will be going thru the neuropsychology testing soon---how do the results of this testing figure into the determination if you can have the surgery.
Dr__Lara_Jehi: The neuropsychology testing evaluates a patient's current function as far as language and memory and other cognitive 'thinking' abilities are concerned. This helps us in two ways. First, it can help localize the spot in the brain that the seizures are coming from. For example, if a person has specific trouble in verbal memory (the ability to remember words) then this suggests that that part of the brain is abnormal.
Second, neuropsychology testing helps us predict the risk of memory, language, cognitive changes with surgery. Again, for example the patient listed above will have very low risks of having any changes with their memory if they have surgery because that function is already abnormal.
Mark92630: Is it possible (are there any known cases in the literature) for an abnormal EEG to be psychogenic? Patient had two MRIs after EEG, and both MRIs (1.5T with and without contrast, and 3T without) are completely clean.
Dr__Lara_Jehi: An abnormal EEG is not necessarily epileptic. A lot depends on what kind of abnormality we are talking about. Some abnormalities may be nonspecific or reflect medication effects. The abnormalities of epilepsy are very specific and they would be unusual in the normal population. A careful review of the EEG itself and the patient's clinical presentation are needed to determine whether the problem is epilepsy or psychogenic.
jillC40: Can a person with developmental delays who might have problems participating in a WADA test be evaluated for surgery?
Dr__Lara_Jehi: Sure. There are alternative ways to assess for language and memory function. Also, many patients with significant developmental delays and long standing epilepsy, especially in the setting of congenital brain lesions or strokes, may not need a WADA test. For most of these patients, their language function is in the more normal side of the brain and they run low risks of complications with removal of their seizure focus. The decision to obtain a WADA test or not is usually done in the setting of a multi-disciplinary patient management conference involving the neurologist, neurosurgeon, neuropsychiatrist and neuroradiologist in our center (Cleveland Clinic). Most patients go successfully through the epilepsy surgery process without needing a WADA.
mollie55: Since I'm 55, how does the neuropsych testing differentiate between verbal memory and just aging?
Dr__Lara_Jehi: There are different kinds of memory functions and abilities. We learn from looking at how a specific type of memory is functioning and also by analyzing how the different types of memory work together. The patterns of memory loss observed in normal aging are different from those seen with specific and localized brain abnormalities such as those that cause seizures. Detailed neuropsych testing is indeed very helpful in detecting these different patterns and differentiating the two conditions.
willow: I understand that epilepsy surgery is dependent on the individual, however, what is your idea on the most successful type of surgery?
Dr__Lara_Jehi: The most successful epilepsy surgery is one that makes the patient seizure free with no complications. As the result of this belief, patients usually undergo a very detailed assessment to determine what part of the brain is causing their seizures and whether this can be removed safely without causing major risks for vital functions, such as memory, language, vision and motor function. We only consider surgery to be completely successful when it works and none of these functions are affected.
For patients who have very severe and frequent seizures, a helpful surgery may be one that significantly reduces their seizure burden (much less frequent seizures) and improves their quality of life, even if it doesn’t give them complete seizure-freedom.
mollie55: If a person only has 3-4 seizures a year is it a logical choice to consider surgery?
Dr__Lara_Jehi: Even 3-4 seizures a year are enough to consider surgery. The risks we discussed earlier about uncontrolled seizures (including sudden death) and the social limitations of having seizures (such as no driving) are only gone if the seizures are completely gone. If you are not completely seizure free with medications, you might want to consider an evaluation of how appropriate surgery is. In a position statement published last year by the International League Against Epilepsy, failure to completely control seizures with adequate and appropriate trials of TWO antiepileptic medications is enough to consider the patient as having intractable epilepsy, and practically then, consider evaluating them for epilepsy surgery.
jillC40: Is surgery ever an option for an individual with more than one focal point?
Dr__Lara_Jehi: Having more than one focal point is not ideal while evaluating epilepsy surgery. The problem there is that you can only remove one of these points and then seizures may continue to occur from the second one.
We have however very rarely performed surgery in similar situations. These are usually patients with a very high seizure burden or ones where the stronger seizures come from one spot and the goal with these patients would be to improve their quality of life and cut down on the number of seizures they are having, even if we cannot make them completely seizure free. Some other treatment measures to consider for patients with multiple epileptic foci include newer antiepileptic medications and a group of therapies labeled as “neuromodulation”, including vagus nerve stimulation or a currently investigational device under study by the FDA (Neuropace).
LGM: How soon do you know if surgery is successful?
Dr__Lara_Jehi: The longer you go seizure-free after surgery, the more confident we are of success. Usually, the risk of seizures returning goes down dramatically (to <5-10%) if a patient is seizure-free beyond a year or two after surgery.
godd2know: Can you discuss some of the possible side effects of surgery? I know it depends on the surgery, the location, etc., but I am just looking for generalities here.
Dr__Lara_Jehi: Surgery can have significant complications. These include immediate surgical complications such as bleeding, infection, and stroke. The risk of these complications is largely dependent on the experience and skill of the surgeon, and is usually minimized by getting the surgery in an experienced center. Other side effects are more related to the part of the brain being removed and include memory changes, visual field changes, and language difficulties. The risk of these complications is usually evaluated before surgery through detailed pre-surgical testing and is usually part of the risk/benefit discussion between you and your doctor while considering surgery.
EDDIE36: What are the highest risks immediate postop?
Dr__Lara_Jehi: The main immediate postoperative risks include hemorrhage, infection, and stroke..
Temporal Lobe Surgery
mollie55: I've been told that my seizures are coming from the right temporal lobe. Does this type of surgery have a good success rate?
Dr__Lara_Jehi: Temporal lobectomy has a very good success rate. This particular type of surgery is the one that is most commonly performed. Based on thousands who have had this surgery at the Cleveland Clinic over the past few decades, we know that close to 57% of our patients are completely seizure free more than a decade after surgery as compared to a 51% chance of success elsewhere in the country (national average) and a less than 2-5% chance of being seizure free with medications (without surgery).
Having a right sided surgery, usually offers the additional advantage of a lower risk of memory problems with surgery.
rabbit: After 30 years of uncontrolled temporal lobe seizures, would surgery be the only options if no medications has helped it? And if seizure free after surgery, can seizures return later even with medications?
Dr__Lara_Jehi: After 30 years of uncontrolled temporal lobe seizures, it is definitely about time to look into epilepsy surgery. Your chances of controlling your seizures with medications are minimal (less than 2-5%). Surgery still offers you at least 10 times higher chance of controlling your seizures. It also dramatically reduces your risk of sudden death and increases your life expectancy by an average of 5 years. Detailed testing is needed to determine your individual chances of success (which may be higher or lower than the average of 50%). One important thing to remember is that a longer duration of epilepsy may be one of the things that lowers the chances of successful surgery, so you don't want to delay your decision too much.
To answer your other question, seizures can return after surgery. This happens in 30-40% of patients and is usually manageable with medications.
tommyboy55: My teenage son was diagnosed with left temporal lobe epilepsy in 2007. His medications have impacted his cognitive functions and ability to do well in school. While his epilepsy is being controlled for the most part by his medications, he is on a high level dose, and his quality of life is negatively impacted. Is he a candidate for surgery? What are the pros and cons? What is the percent chance that the origin of his seizures can be located? What is the percent outcome that he could be medication free following surgery?
Dr__Lara_Jehi: Yes, your son is a candidate for evaluation for epilepsy surgery. The goal would be to remove his seizure focus and hopefully then cut down on his medications so he can regain meaningful quality of life.
His chances of success can be better evaluated after a detailed testing and evaluation in an epilepsy surgery center, such as the Cleveland Clinic. On average, more than half of patients become completely seizure free with surgery and pediatric patients have a higher chance of getting off anti-seizure medications than adults do.
In children, an additional consideration is the fact that the earlier we control the seizures with fewer medications, the better chance we are giving our children of having normal intellectual and social development.
EDDIE36: If the patient is an active athlete (16 yrs. Old) and left temporoparietal lobe is foci, is it likely that they will be able to resume sports?
Dr__Lara_Jehi: The ability to resume sports will depend on a few things, mainly the motor control and adequate vision. We usually don't expect significant issues with motor control after a left temporoparietal resection, so that shouldn't be a problem. A detailed visual field examination can be done to answer your question fully and look into whether there are any visual problems that could stand in the way of returning to sports.
Daddyshome: It has been recommended that my son have a left temporal lobectomy. He has so many seizures and they haven’t been able to control them through medication. Once he has this surgery, what would you consider success – a 10 % decrease, 30%, 50%. I want him to have as normal a life as possible!
Dr__Lara_Jehi: A success is “seizure-free”: that is the definition we use in our determination of the % seizure-free with surgery. If that is not achieved, then any reduction in seizure frequency that improves quality of life is helpful, and we know that this is achieved in a very large number of patients. If we add these “improved” patients to those who are completely seizure-free, then surgery may be “successful” in close to 80% of the cases.
Marf: I had my surgery this past Feb, the size of 2 parts of a finger of my Right Temp Lobe, and the entire right hippocampus was removed, how long would you say it would take to "heal?"
Dr__Lara_Jehi: It should have “healed” by now. If you are still having any symptoms that you think might be related to the surgery, you need to follow-up with your surgeon.
VNS: Vagus Nerve Stimulation
barry: My nephew had a vagus nerve stimulator put in about 8 months ago. My question is twofold. At what reduction of seizures do you consider this a successful treatment and can you use this in conjunction with a seizure drug to help reduce them even more?
Dr__Lara_Jehi: Vagus nerve stimulation (VNS) has a 50% chance of reducing the seizure frequency by half. In other words, half the patients who get VNS are expected to have half the seizures they used to before the procedure. Only a small percentage (less than 5-10%) becomes seizure free. That is why it is usually an option that is reserved for patients who are not candidates for epilepsy surgery. We do not recommend them in patients who have not undergone an epilepsy surgery evaluation because they have a much lower success rate. VNS can definitely be used in conjunction with other medications.
Worriedmom: The thought of surgery for my daughter really scares me. We have tried different medications with varying degrees of success. Her doctors believe she is a candidate for surgery and are suggesting having her tested. Before we even consider this, I would like to know of any homeopathic or alternative therapies that we can try (even if in at conjunction with traditional therapies) that you have had success with? I would like to say that I have least tried everything before going for surgery.
Cleveland_Clinic_Host: Actually, would you address expected outcomes for alternative treatments?
Dr__Lara_Jehi: Epilepsy may be difficult to treat and it is important to keep an open mind. Several “alternative” treatment modalities have been proposed including vagal maneuvers, neurofeedback, acupuncture, or special breathing techniques. It is difficult to say how well any of these techniques work because none has been subjected to the rigorous large-scale randomized controlled clinical trials that anti-epileptic medications or surgery have been through. Some success stories with these alternative therapies maybe very tempting, but we need to remember that “miraculous recoveries” are always over-reported while a large number of patients who may have tried these therapies with no success do not make it to the websites of private companies or groups marketing their products. And unless the proportions of these two groups (successes and failures) are known, we can’t know the true value of the procedure. What I usually tell my patients is that I do not recommend these therapies and I would not delay proven therapeutic options such as medication or surgery to try these approaches, but that if a procedure/therapy is safe, I have no problem with them trying it to experience the effect for themselves.
Choosing an Epilepsy Center for Treatment
mollie55: When considering surgery what should a patient look for when deciding what facility to use? There are several clinics and it's hard to decide where to go.
Dr__Lara_Jehi: There are definitely many good surgical centers in the country, and the choices can be overwhelming. Objective criteria that may help you decide where to go include: 1)- the experience of a particular center in epilepsy surgery (how long have they been doing this procedure? Do they have a dedicated epilepsy surgeon (a neurosurgeon who only or mainly does epilepsy surgery)? How many epilepsy surgeries does this surgeon perform per year?). 2)- what are the outcomes of their treatment and how well do they keep track of their progress? (do they keep track of how well their patients do over time? How many of their patients are seizure-free 5, 10, or 15 years after surgery? How many have complications with the surgery?). and 3) a description of the multidisciplinary support team they offer to help their patients through the surgery (Do they have a dedicated epilepsy psychiatrist? Social worker? Support groups? etc..). For epilepsy centers committed to providing the best care possible, this information is usually made readily available for patients.
General Epilepsy Questions
EDDIE36: Why do we see an increase in anxiety in seizure patients?
Dr__Lara_Jehi: This may be directly related to the emotional impacts of having seizures (unpredictable nature of spells, fear of having a seizure with people around that may watch it, fear of the consequences of having seizures such as injuring oneself or losing job, etc). There is also probably a mechanistic link between the two conditions (epilepsy and anxiety) in that the same parts of the brain that are involved in the generation of seizures may also be involved in the generation of anxiety.
Mark92630: Can epilepsy, itself, be psychogenic? That is, can a person give himself epilepsy due to, for example, chronic high stress?
Dr__Lara_Jehi: The short answer is No. Various forms of stress may lower the seizure threshold and complicate a patient’s response to medications, but psychological stress is not enough to produce epilepsy.
Backandforth: 10 year old boy with multi regional epilepsy as result of Mycoplasma Encephalitis in July, 2009. Question: He is on 3 anti-seizure drugs and still having seizures. He has trach, G-tube. Can he recover enough to walk again and have some quality of life? He was perfectly normal until 7/09.
Dr__Lara_Jehi: This question needs a detailed evaluation in the setting of an office visit where the patient can be examined and the records reviewed in detail.
rabbit: Is there an Alzheimer’s medication that helps with certain types of epilepsy?
Cleveland_Clinic_Host: I'm sorry to say that our time with Dr. Lara Jehi is now over. We apologize that we were not able to answer everyone's questions today! Thank you again Dr. Jehi for taking the time to answer our questions today about Epilepsy: Outcomes of Surgical & Medical Treatment Modalities.
Dr__Lara_Jehi: Thank you all for your interest and your questions. I know an hour is such a short time and I am so sorry that I couldn't answer all your concerns. I also want to send a word of encouragement and appreciation to you, patients and caregivers of patients with epilepsy, for all the courage and perseverance you show while dealing with this disease. Getting informed and learning about new treatments is the first step to getting better!
- To make an appointment with Lara Jehi, MD or any of the other specialists in our Epilepsy Center at Cleveland Clinic, please call 216.636.5860 or call toll-free at 866.588.2264. You can also visit us online at www.clevelandclinic.org/epilepsy.
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