Online Health Chat with Imad Najm, MD; Jorge Gonzalez-Martinez, MD, PhD; Adriana Rodriguez, MD; Chetan Malpe, MD
November 3, 2011
Epilepsy is one of the most common neurological disorders, affecting up to one percent of the population in the United States. Plus, more than 45,000 children ages 18 and younger are diagnosed with epilepsy every year. Overall, medication can control seizures in 60 percent to 70 percent of epilepsy patients. For those whose epilepsy cannot be controlled with anticonvulsant medication, or who experience intolerable side effects from anticonvulsants, there are other options available, including epilepsy surgery. 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 the majority of cases. In a minority of cases, seizure frequency is markedly reduced.
The Cleveland Clinic Epilepsy Center is one of the largest and more comprehensive epilepsy programs in the world for the evaluation and treatment of epilepsy in both children and adults. More than 300 patients with medication-resistant epilepsy undergo surgical procedures annually at Cleveland Clinic Epilepsy Center. The center is one of the few medical centers in the country that has been instrumental in using 3-D mapping to pinpoint the focus of seizures and improve surgical outcomes. The Epilepsy Center was also the first in North America to introduce SEEG, a minimally invasive technique, which is a more precise and less invasive approach to localizing seizures.
As part of Cleveland Clinic Epilepsy Center’s mission to provide the best care for our patients in Florida and Central/South America, an integrated multidisciplinary epilepsy program was formed at Cleveland Clinic Florida in Weston. The Florida program offers a new, state-of the-art, four-bed Epilepsy Monitoring Unit for adults and performs noninvasive evaluation of our patients with epilepsy using the same protocols in place at our center in Cleveland. Patients evaluated at Cleveland Clinic’s Florida epilepsy program benefit from the long tradition and world-renowned expertise of the Cleveland Clinic Epilepsy Center staff.
Dr. Najm is Director of Cleveland Clinic's Epilepsy Center at the Cleveland Clinic Neurological Institute, Division of Neurosciences. Dr. Najm serves as Head of the section of adult epilepsy and clinical neurophysiology, and as Course Director of neural and musculoskeletal sciences at the Cleveland Clinic Lerner College of Medicine at Case Western Reserve University, where he is also Co-Director of basic sciences. Dr. Najm received his board certification in adult neurology with an added qualification in clinical neurophysiology. Dr. Najm has more than 19 years of experience in neuroscience, which includes conducting numerous research projects dedicated to exploring the topic of epilepsy.
Dr. Gonzalez-Martinez is a neurosurgeon with Cleveland Clinic’s Epilepsy Center and a member of our biomedical engineering team. His specialty interests include epilepsy surgery, general neurosurgery, pediatric oncology neurosurgery, spine surgery, array signal processing, brain malformations causing epilepsy, brain tumors, epilepsy and epilepsy surgery in children and adolescents, mechanism of epileptogenesis, and vagus nerve stimulation.
Dr. Rodriguez has been a staff physician at Cleveland Clinic Florida since 2007. She is certified in neurology, holds memberships with the American Academy of Neurology and the American Medical Association, and has a special interest in epilepsy.
Dr. Malpe has been a staff physician at Cleveland Clinic Florida since 2010. He completed his fellowship in clinical neurophysiology, EEG, epilepsy from Cleveland Clinic in Ohio in 2010. Dr. Malpe is certified in neurology with a special interest in epilepsy.
To make an appointment with Imad Najm, MD, Jorge Gonzalez-Martinez, MD, PhD, or any of the other specialists in the Epilepsy Center at Cleveland Clinic, please call 216.636.5860 or call toll-free at 866.588.2264. To make an appointment with Adriana Rodriguez, MD, or Chetan Malpe, MD, at Cleveland Clinic Florida, please call 954.659.5671 or 877.463.2010. You can also visit us online at www.clevelandclinic.org/epilepsy or www.clevelandclinicflorida.org.
Cleveland_Clinic_Host: Welcome to our Online Health Chat with Dr. Najm, Dr. Rodriguez, and Dr. Malpe. We are thrilled to have them here today for this chat. Dr. Gonzalez-Martinez is in surgery today and unable to join us. Let’s begin with some of your questions.
Paul293: I have right hippocampus damage due to a high temperature as an infant. All my learning was on the left brain. I am a very healthy 61-year-old male and have been through several medications. My brain keeps realizing what they are, and then I start seizures again in months. I hope that surgery will fix the condition and leave me healthy and able to drive again so I can take care of my wife of 36 years.
Dr__Najm: Dear Paul, if your epilepsy is failing to respond to trials of more than two medications (you continue to have seizures despite medications), surgical treatment should be considered. The fact that you have lesions in the right hippocampus may make a surgery on the right temporal lobe more likely to be successful in controlling your seizures, granted your epilepsy is proven to arise from that area. (This would more likely need to be assessed through a prolonged inpatient video EEG evaluation in the epilepsy monitoring unit.)
lmz2011: My husband had a frontal lobectomy to remove the piece of the brain that was, according to tests, causing his seizures. It has been two years and he still has seizures just as much as he did before the surgery, and medications are not working. We are feeling discouraged. What is the next step?
Dr__Malpe: I understand your frustration. Based on what you are saying, it seems that the area of the brain from which your husband's seizures are arising (what we call the epileptogenic zone) may not have been resected (or completely resected) and, therefore, your husband's seizures have persisted. Unfortunately, this sometimes occurs with epilepsy surgery. At this point, if he is still not responding to medications, it would be appropriate to repeat a video EEG monitoring evaluation to confirm his diagnosis, in addition to obtaining an ictal SPECT scan during a recorded seizure, which may help localize where his seizures are arising from. In addition, a PET scan and MEG (magnetoencephalogram) may provide additional information. His case could then be presented at a multidisciplinary patient management conference at a comprehensive epilepsy center to determine what his treatment options are. Treatment options may include further surgical intervention or an invasive intracranial EEG evaluation with either a stereotactic electroencephalogram (stereo EEG) with depth electrodes and/or subdural grids to further map his epileptogenic zone to see if he is a surgical candidate.
samantha39: I want to have the surgery to remove the part of my brain causing my epilepsy, but have been told that I was born with it -- juvenile myoclonic epilepsy. Is it still possible maybe to get it?
Dr__Najm: Unfortunately, if your epilepsy is confirmed to be generalized, such as juvenile myoclonic epilepsy, there are no resective surgical options at this stage. But before making a final recommendation, I would recommend that you get a second opinion from an epilepsy expert to confirm the diagnosis of juvenile myoclonic epilepsy.
In the future, I believe there will be some treatment options that may be targeting generalized epilepsies.
bobbo: My son’s doctor is considering surgery, as his seizures are not being controlled well at all with medicines. During the Wada test, the left side of his brain was numbed and he was unable to speak. Does this mean that if this area of his brain is removed, he will definitely be unable to speak or that it is just a possibility?
Dr__Najm: If your son continued to speak after numbing one side of the brain, the immediate conclusion is that the particular side that was numbed is not very essential for speech, and, therefore, a surgical intervention on that particular side is much less likely to result in speech dysfunction (language).
bobbo: Referring to the question you just answered regarding the Wada test and speech after the left side of his brain was numbed, he was NOT able to speak. Does this mean that if this area is removed, he will definitely not be able to speak, or is there just a chance that he will not be able to speak?
Dr__Najm: If he was not able to talk after numbing the left side, this would mean that the left hemisphere supports speech/language function.
This does not automatically mean that a surgery on the left hemisphere is going to lead to speech dysfunction. It all depends on exactly what part of the left hemisphere the resection is going to involve.
Although I do not have all the info about the case, there may be at times a need for further mapping of the function and its relationship with the area of the seizure onset (epileptic region).
ball: As a patient who at 21 started having sporadic grand mal seizures (maybe four over a few years), is it possible after 10 years of being seizure-free (I'm now 44) to develop other type of seizures?
Dr__Najm: Possible but unlikely
ball: I have been grand mal seizure-free for 11 years and my neurologist feels it would be OK if I tried weaning off (medications), although I am really nervous about doing that. Call it a crutch, but I don't ever want to experience a grand mal again. It is a terrifying experience, and the last time I had one I awoke with blood on the floor and a broken vase. Are there any sure-fire tests to confirm that I'd be seizure-free without medications?
Dr__Rodriguez: No, there is no sure-fire test or way of knowing that you would never have a recurrent seizure off medication. We cannot guarantee that even if you are on medication. Primary generalized epilepsies, in general, are easier to control, and I am aware of one study where people did well avoiding their known seizure triggers off medications. Most adults continue medication life-long.
cara333: I have been considering surgery. (I am now 25 and have had seizures most of my life.) After all the tests, the doctors are still unable to pinpoint exactly where the seizures are coming from. Four surgeries have been proposed, including putting in a grid to try and find out exactly where the seizures are coming from. There is no guarantee that the surgeries will be successful and that I will be seizure-free. What are the success rates for these types of surgeries? How do I now if it is worth putting myself through all this, especially with no guarantee? I have partial complex seizures.
Dr__Najm: If your seizures fail to respond to multiple antiepileptic medications, there is, unfortunately, minimal chance that any medication would result in long-lasting seizure control. Because of that, I think we need to do everything we can to find out if there is a single focus or area in the brain that we can identify as the source of the seizures that we can surgically and safely remove.
Unfortunately, I do not know all the details of your case, but in general, an invasive evaluation has around a 50 percent chance of resulting in a clear definition of the epileptic area of the brain. Should resection of the focus be performed, the chances of seizure freedom may range anywhere from 25 percent to 75 percent (depending on multiple factors).
pjlillyblad: Is surgery always contraindicated for bilateral independent seizure foci? My 26-year-old son has a lesion per MRI on his left hippocampus. He had a PET scan with hypoperfusion on the left side of the brain. He had depth electrode monitoring and had one out of six seizures originating from the right side of the brain. They said the right hippocampus, but there is no visible lesion (didn't sound sure). Symptoms when seizing from the left side of the brain have more defined spikes, and the right hand fisting and posturing on the right side are very obvious and what I see most at home. Medications don't work. VNS (vagus nerve stimulation) makes him sick. He now has a femoral sub trochanter spiral fracture. He has short-term memory problems and forgot to take his medications. The fracture was from the seizure torsion of muscles (per the orthopedic surgeon) and on the right seizures refractory to medication and VNS /Barrows says no surgery. Should I get a second opinion or are the bilateral seizures always contraindicated?
Dr__Malpe: It seems like your son has been through quite a lot already and has disabling drug-resistant epilepsy. If indeed he has bilateral independent epileptogenic foci, then his chance of seizure freedom after surgery is likely to be low unfortunately.
However, surgical resection is considered in carefully selected patients, and this is determined on a case-by-case basis. If he is not a candidate for a resective surgery, other options may be available to him in the near future, such as responsive neurostimulation (RNS, or Neuropace, not yet FDA approved).
Even though you have the opinion of highly qualified physicians, in challenging cases like your son's, a second opinion at a comprehensive epilepsy center may be helpful.
masliger1985: What are the side effects of a left frontal lobe removal?
Dr__Rodriguez: This question is difficult to answer. It depends on where you are language dominant and what the surgery actually removes. Language and motor function on the contralateral side may be affected. Again, it depends on what is resected.
carolt: My 18-year-old son had a focal resection of his parietal area because of a perinatal stroke. They left some of the tissue because it was in the motor strip and he is pretty high functioning. The surgery was three years ago. Within the last nine months, he developed an arm raising event a few times a week. Medications have been tweaked, but the twitch still occurs. EEGs have been done, but there’s no correlation to the twitch, which I understand could be simple partial seizures. Is there any harm in doing nothing or should the surgeon be contacted?
Dr__Malpe: At this point, it would be reasonable to wait and monitor his symptoms for now, if they are tolerable. If indeed they are epileptic in nature, they will evolve into other clinical manifestations with time, at which point further evaluation with EEG monitoring would be appropriate.
minmom68: I have a 10-year-old who suffered a stroke around birth. The damage is mostly in the parietal and occipital lobes on the left side, but there is some damage also in the right hemisphere in the parietal lobe. The seizure focus is in the left occipital/parietal area for about 75 percent of the seizures. Testing (fMRI, MEG, psychoeducational evaluation, and Wada) shows the language area is in the left hemisphere still. Seizure focus is about 25 percent in the right damaged area also. He currently has complex and simple partial seizures with generalization tonic clonic, clonic, atonic, and the rare autonomic seizures. The first seizure was at 16 months of age. It was controlled until three years ago. It has progressively gotten worse. Would surgery be a consideration? Hemispherectomy? Corpus callosotomy? What are the chances the language area would move to the right at this age? He is currently in 4th grade at about a 3.5 grade level. He is a very smart and active ambulatory boy.
Dr__Najm: Although your son's case is not easy, we think we have options to consider at this stage. I will try to answer your questions based on the information that you provided:
- Would surgery be a consideration? Yes
- Hemispherectomy? Corpus callosotomy?
Hemispherectomy may be a consideration, but the issue of speech/language should be resolved. Corpus callosotomy is always a possibility, but probably of a last resort. There may be other options that may include more limited resections if we are able to further hone in and localize the area of seizure onset and define its relationship with functional area(s) of the brain. In order to be able to assess this possibility, an invasive evaluation with electrodes placed on the cortex and/or in the brain (subdural grids or depth EEG electrodes (so called SEEG electrodes) would be needed.
- It is hard to assess the chances of language transfer at this stage. It would require further evaluation of the study results so far.
mamabear: My adult handicapped son has Lennox-Gastaut syndrome. I read that the corpus callosotomy may help the most. Can he have this surgery without having all the testing? He is severely DD.
Dr__Malpe: Corpus callosotomy can be helpful in selected patients with Lennox-Gastaut syndrome. If he has recorded EEG data from the past capturing his seizures (and seizure types), this data can be reviewed by an epileptologist at a comprehensive epilepsy center to determine if proceeding with a corpus callosotomy is appropriate, or if additional testing is required.
mamabear: So, if there is no focal point from which seizures start, then no brain surgery would help?
Dr__Malpe: Epilepsy surgery is a treatment option for patients who have drug-resistant focal epilepsy, in which seizures arise from a specific focal area within the brain that can be safely resected. Determining whether a patient has drug-resistant focal epilepsy is the first step in the pre-surgical evaluation, and this is done using a video EEG monitoring evaluation at a comprehensive epilepsy center.
Wee: My 10-year-old daughter has tuberous sclerosis complex and has already undergone three epilepsy surgeries. Her current medications are Felbatol® (felbamate), Lamictal® (lamotrigine), and Tranxene (clorazepate). She continues to have seizures. Her seizure activity has improved since adding Felbatol®, but now her autism is worse. Her surgeries were in the right temporal and parietal, bi-frontal, and then right frontal, done using MEG, VEEG, DTI MRI, and PET. Is there something else we might try? I understand NYU has a more invasive 3-stage surgery. What approach can Cleveland Clinic offer?
Dr__Najm: I am sorry to hear about your daughter's severe epilepsy. Our approach at Cleveland Clinic is to evaluate these cases with the technique of SEEG (stereotactically placed depth electrodes in multiple areas of the brain). This technique has been used at Cleveland Clinic since 2009. The advantages include our ability to sample multiple areas of the brain (multiple tubers in your daughter's case) from multiple lobes and both hemispheres and from deep areas of the brain. We think this approach may be more appropriate in difficult cases like your daughter's.
ball: I have been on Tegretol® XR 600-800 mg daily for 11 years, and for several years my blood work shows low sodium (average 129 when normal range starts at 135). First, how much of a problem is this? Second, will it continue to decrease? Third, is it really causing my kidneys to not work efficiently or does it just skew the number? Last, would this bring about the onset of (this year started) severe fatigue/no stamina/lack of energy (normally active/sports lifestyle)?
Dr__Najm: Sodium decrease is a side effect of Tegretol® (carbamazepine) treatment. If it remains stable at 129 without side effects, my recommendation would be to continue to monitor it. If it’s stable, there’s no need to change your treatment. If it continues to decrease, you would have to change to another medication.
I doubt that the decrease in sodium is due to kidney damage.
A potential manifestation of low sodium would be fatigue, but this is a rather unspecific side effect that can be due to many other causes. I do recommend that you check with your doctor.
Other side effects of Tegretol® include gait balance problems and rare liver dysfunctions.
iavila: What can we do about Dilantin® causing several problems due to taking it for a long period of time?
Dr__Rodriguez: The best way to avoid further side effects from long time use of Dilantin® (phenytoin) is to change the medication. I have seen gingival hyperplasia improved after stopping the medication. Osteoporosis can be treated. There are many newer AEDs on the market with similar efficacy rates that may have fewer side effects for you.
iavila: Is Lamictal® one of the best medicines on the market to control seizures?
Dr__Malpe: Lamotrigine (Lamictal®) is an effective, commonly used antiepileptic medication, and is often well tolerated. There is no "best" antiepileptic medication available, but there is an appropriate medication for each individual patient, and for some patients, that medication is lamotrigine.
masliger1985: How do you find out if you are eligible for surgery if medication is not working? What information is needed before surgery is decided, such as MRI, MEG, etc.?
Dr__Rodriguez: If you have refractory focal epilepsy, you may be a surgical candidate. You would need to know where your epilepsy focus is, or where your seizures are coming from - meaning you would need an EEG or VEEG to localize and capture the seizures. You would then correlate this with findings from imaging, MRI and PET scan. Normally there is an additional test, neuropsychological testing to assess your memory function and language.
Paul2931: What is the approximate recovery time for a right hippocampus removal causing epilepsy?
Dr__Najm: Generally, this procedure is very well tolerated and safe if it is performed by an experienced and well-trained neurosurgeon at a comprehensive epilepsy surgery center.
Post-surgery immediate recovery: two to five days (sent home). Most patients return to full time work by one month after surgery.
mollie73: I had a right temporal lobectomy in July 2011. So far it has been a success. One thing I was surprised by was that I did not have any headaches. Is that common?
Dr__Malpe: It is wonderful to hear that you did not have any associated headaches. Postoperative pain related to surgery is subjective, but it is great to hear that you did not have headaches.
magaldo23: Fortunately, Dr. Najm, thanks to you, Dr. Gonzalez, and all of the people at Cleveland Clinic I have been seizure-free going on three years in March, so thank you all so much for saving my life! However, since I have memory loss now and my left temporal lobe has been removed, I was let go from work shortly after; and since it’s taking me a little time to learn new tasks, I am having a hard time getting a job now. Any suggestions?
Dr__Najm: Happy to hear of seizure control results. Unfortunately, memory dysfunction is a potential side effect of hippocampal removal. But I know many patients who were able to recover very nicely from the functional standpoint after temporal lobectomy.
My recommendations are as follows:
- Never give up
- Vocational and occupational rehabilitation
- Call us if you need further help
Cleveland_Clinic_Host: I'm sorry to say that our time with Dr. Najm, Dr. Rodriguez and Dr. Malpe is now over. Thank you again, Doctors for taking the time to answer questions about epilepsy surgery.
To make an appointment with Imad Najm, MD, Jorge Gonzalez-Martinez, MD, PhD, or any of the other specialists in the Epilepsy Center at Cleveland Clinic, please call 216.636.5860 or 866.588.2264. To make an appointment with Adriana Rodriguez, MD, or Chetan Malpe, MD, at Cleveland Clinic Florida, please call 954.659.5671 or 877.463.2010. You can also visit us online at www.clevelandclinic.org/epilepsy or www.clevelandclinicflorida.org.
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This chat occurred on 11.3.2011
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