Q & A Chat: Epilepsy Surgery

On February 26, 2008, Dr. Orrin Devinsky was our guest expert for a question and answer chat on epilepsy surgery. Epilepsy surgery has been available at specialized epilepsy centers for many years and can be a very acceptable and appropriate form of treatment for some people. Unfortunately, surgical options are frequently misunderstood, leaving people with epilepsy and their families with many questions and concerns. The purpose of this session was to provide general information and resources. These answers and the information on epilepsy.com are not intended to be medical advice.

People are encouraged to direct specific questions to their own doctor for medical advice. Dr. Devinsky is a Professor of Neurology, Neurosurgery, and Psychiatry at New York University School of Medicine. He directs the NYU and Mount Sinai Comprehensive Epilepsy Centers, the Staten Island University Hospital Comprehensive Epilepsy Center, and the Saint Barnabas Institute of Neurology and Neurosurgery. Dr. Devinsky is also Co-Founder and Vice-President of Epilepsy Therapy Project and Associate Editor of epilepsy.com.

Question: When is surgery considered an option for the treatment of epilepsy and what are the factors that determine whether someone is appropriate for surgery?
Answer – Dr. Devinsky: Surgery may be worth considering in people whose seizures are not well controlled with medications - that is there are ongoing seizures that impair quality of life or the medication doses needed to control seizures are so high that they impair quality of life. If the epilepsy or medicines are significant problems despite systematic attempts to change the medications, surgery is worth considering. The next major consideration is to find out if the source of seizures can be localized to an area of the brain that can be safely removed. There are a number of steps that are done to determine if a person is a surgical candidate and how good a candidate (what is the likelihood of having a successful outcome and what are the risks in a specific case?). These will involve detailed EEG testing, brain scans (such as MRIs, and possibly PET or SPECT scans), neuropsychological testing, and Wada tests for example.

For more information:

Question: What is the percent of people whose seizures can be controlled? How many may have to live with continued seizures and what are their options?
Answer – Dr. Devinsky: Seizures in at least 65-70% of patients with epilepsy can be controlled with medication.
Epi_help: Of the remaining people, epilepsy surgery may be a possibility for some, while those who are not surgical candidates or who are not interested in brain surgery may consider dietary therapies, vagus nerve stimulation, or investigational trials of medications or devices.

Question: If an MRI and CT scan are normal, but the EEG is abnormal, can a person still be considered for surgery?
Answer - Dr. Devinsky: Yes, a person may still be a candidate. The question is how localized the EEG abnormality is. If seizures are consistently recorded from one area and the EEG spikes between seizures also come from that area - you are likely a fairly good candidate. If the seizures come from wide areas or multiple areas and the spikes are from multiple areas, you are probably not a good candidate.

Question: Does there have to be a known reason or cause of epilepsy, for example a scar on the brain, in order for surgery to be done?
Answer - Dr. Devinsky: There does not need to be a known cause. However, if there is a single area of abnormality on MRI that corresponds to where seizures come from - this predicts a very good chance of success. Success is still possible if the MRI is normal.

Question: Is epilepsy a physical or a hidden disability?
Answer - Dr. Devinsky: Epilepsy is a neurological disorder. It is a brain disorder that can result from a structural abnormality such as scar tissue but can also result only from nerve cell dysfunction (although the cells appear normal, even under the microscope). If your question has to do with stigma - then epilepsy is also a disability that can be hidden but emerge when people learn of epilepsy.

Question: What does right temporal dysfunction means in terms of EEG results?
Answer - Dr. Devinsky: Right temporal dysfunction is usually used to refer to an EEG that shows a seizure coming from or originating in the right temporal region.

Question: What are the chances of right temporal lobe surgery actually working?
Answer – Dr. Devinsky: Right temporal lobe surgery is actually the most successful type of surgery, especially if the MRI shows an abnormality in that area.

For more information:

Question: What percentage of people who have surgery for right temporal lobe epilepsy find that it doesn’t work and need to have additional surgery?
Answer – Dr. Devinsky: This depends on the specifics of each situation. Overall, more than 70-80% of right temporal lobe patients have an excellent outcome. In those who don’t, the person should be re-evaluated and if there is evidence that seizures still come from the right temporal lobe, additional surgery may be reasonable.

Question: Can invasive monitoring with strips and grids as well as surgery to remove the seizure focus be done during the same hospital stay?
Answer – Dr. Devinsky: Yes, in many cases, the grids and strips are done and then after a period of recording (when the EEG records a person having seizures), the epilepsy tissue can be removed. In other cases, if the study is mainly diagnostic, it may be necessary to do an additional hospital stay for surgery.

For more information:

Question: What importance does the neuropsychology testing play in determining the potential benefit and risks of surgery?
Answer - Dr. Devinsky: Neuropsychology testing helps define areas of strengths and weaknesses. This can help support the doctor's localization of where seizures come from, and also help to assess the risks of the suggested surgery.

For more information:

Question: Is the WADA test done for all potential surgery candidates? If not, how is it determined who should have a WADA test?
Answer - Dr. Devinsky: The WADA test is most often done for patients who are considering a temporal lobectomy. This is because it can answer questions about function on both sides of the brain, for example where language is as well as how memory works on both sides. However, it is also done when the doctors need to know where language is located or if they are uncertain where the seizure focus is (for example, the frontal or temporal lobes - or both lobes).

For more information:

Question: How important is the WADA test in consideration for a left temporal lobectomy?
Answer – Dr. Devinsky: Very important! A Wada test helps us to identify what side of the brain controls language and perhaps most importantly, tells us how memory works on both sides of the brain. One of the most worrisome problems after left temporal lobe surgery is memory impairment - and the Wada can help to better define the potential risk to memory.

Question: Does brain surgery always impair memory somewhat?
Answer - Dr. Devinsky: No! In many cases, brain surgery does not affect memory. The cases in which memory is most likely to be affected are left temporal lobectomies. In some cases, such as right temporal lobe surgeries, memory may improve as seizures are controlled and eventually medication dosages are reduced.

Question: What risks are associated with a left temporal lobectomy?
Answer - Dr. Devinsky: The main effect on language is for word retrieval. And among the words, the greatest difficulty is often for people's names and is often a problem in people with left temporal lobe epilepsy even before surgery.

Question: Can it be assumed that people with left temporal lobe epilepsy who have difficulty with word retrieval and names before surgery have a good chance of experiencing even more difficulty afterwards?
Answer – Dr. Devinsky: It varies, but yes, there may be more difficulty after surgery. But if surgery is not done, and seizures continue from the left temporal lobe, the problems may also get worse over time.

Question: A person who had right temporal lobe surgery experienced worsening of memory afterwards.
Answer – Dr. Devinsky: That is unusual, but certainly possible. This is one reason to do the Wada test since such complications can often be predicted by this test.

Question: Is memory loss after surgery of a temporary nature? Or is post operative memory loss usually permanent or long term?
Answer – Dr. Devinsky: It varies. Often memory problems improve in the weeks and months after surgery - but in some cases, especially those in the left temporal lobe - there can be permanent problems. I should also mention that one reason that a right temporal lobectomy can cause memory problems is if the right hemisphere is dominant for language functions.

Question: If a person has right frontal lobe epilepsy, does it mean that a person has to have or should have epilepsy surgery?
Answer – Dr. Devinsky: Absolutely not. It is always a personal issue of risk and benefit. It is important to carefully consider the risks of surgery - but also very, very important to consider the risks of chronic epilepsy (and epilepsy meds - which are still needed after surgery but usually at lower doses).

For more information:

Question: Is frontal lobe surgery even considered? Do you find it to be successful and helpful as a whole for most people who have it?
Answer – Dr. Devinsky: How successful frontal lobe surgery may be will depend on each case or situation. If there is a single abnormality on the MRI and seizures come from that area - the success rate is very good. However, if the MRI is normal and seizure foci are hard to identify on the EEG, the success rate is lower.

Question: How long is the typical recovery period from surgery?
Answer - Dr. Devinsky: Depends on the case. A person who has a one stage surgery procedure (only removing, for example, part of the right temporal lobe without invasive electrodes) can leave the hospital 4-5 days after surgery and return to work in 4-6 weeks. In other cases, if a person has surgery that involves two stages with invasive electrodes, the recovery can be several weeks longer. But it is really very individual.
Epi_help: People should talk to their epilepsy team about what to expect in their recovery. The type of work a person does before surgery may affect how soon they get back to work afterwards. If a person is unemployed before surgery, they would do best in a vocational (or job) rehabilitation program. Social changes after surgery also can take a bit longer to sort out and it helps to work with a social worker or psychologist after surgery.

Question: A person had surgery many years ago and was seizure free for 3 years following surgery. Seizures returned around menstruation at age 12. What can cause scarring on the brain to suddenly come back and cause seizures to start again?
Answer – Dr. Devinsky: It is likely that the surgeon did not remove 100% of the epilepsy tissue. It is hard to remove it all in many cases. In such cases, it is often necessary to continue medications and sometimes, when indicated, to consider additional surgery.

Question: A person was told that even though their surgery was 100% successful, there was a 30-40% chance that seizures could return if the person was to come off their medication. Why is that?
Answer – Dr. Devinsky: Because, as I said above, it is very hard to remove 100% of the epilepsy tissue. Therefore, if, for example, 10-15% is left behind (because removing it would be dangerous), then the medicines can control this, but if the medicines are removed, then seizure activity can occur.

Question: A user reported being seizure free since surgery in January 2007. She is still on two medications and asked if people ever come off all medications or are they left on them for the rest of their life?
Answer - Dr. Devinsky: This is a question that is very case specific. Depending on the case, if the person is seizure free (including auras!) and their EEG looks good (no epilepsy waves) then I will often start to reduce the second drug after one year of seizure freedom - but this depends on the case and the doctor's views - there is no right answer. You need to have a discussion with your doctor about risks and benefits of lowering meds.

Question: Is surgery the only option if medicine does not help?
Answer – Dr. Devinsky: No. There is the possibility of experimental (investigational) drug trials. There is also the vagus nerve stimulator, which is surgery, but not brain surgery.

For more information:

Question: A person reported that they had surgery on the right temporal lobe and still had seizures afterwards and needed to remain on medicines. What may be next for this person?
Answer - Dr. Devinsky: It may be worth being re-evaluated to see if seizures are still coming from the right temporal lobe. Alternatively, it may be worth getting a second opinion about the drugs you have used and see if another drug or combination is possible.

Question: Is there is a link between autism and epilepsy?
Answer – Dr. Devinsky: There is a much higher rate of epilepsy among individuals with autism (up to 15% or higher).

Question: Is surgery possible for generalized forms of epilepsy?
Answer - Dr. Devinsky: If the epilepsy is truly generalized (in onset) - then there is no brain surgery currently available. There are two exceptions. One is the vagus nerve stimulator - which is not brain surgery but can help in generalized epilepsies. Also, for individuals with drop seizures and tonic or tonic-clonic seizures that are of certain types (for example in Lennox Gastaut Syndrome), a surgery called a corpus callosotomy may be beneficial.

For more information:

Question: If a person has focal seizures that spread to ‘grand mal’ seizures most of the time, is it better for the person to look towards VNS Therapy?
Answer - Dr. Devinsky: It depends where the focal seizure starts. If it starts in the motor area (which controls muscle movements), it may be reasonable to start with a VNS because brain surgery to control seizures coming from the motor area may cause weakness. However, until subdural electrodes (or something similar) are used to precisely identify where seizures actually begin (they may start near but not in the motor area) - it is hard to make a firm recommendation. Also, there is a surgery called multiple subpial transections that can be done in the motor area for seizure control. It is less effective than removal - but can be done safely without causing permanent weakness.

For more information:

Question: A person’s nephew has had epilepsy since he was 3 months old. No medication has ever worked. A few months ago he had surgery on his left temporal lobe but continues to have seizures. He is already on four medications and the delays from the medications and continued seizures are building. What can be done for a child like him and is there any hope? His parents have not left the house together in two years because one of them always wants to be there to monitor him. It is a terrible life for them and they are finding no hope anywhere.
Answer – Dr. Devinsky: These are very difficult cases. It is worth considering investigational drugs and VNS. It may also be worthwhile to obtain a second or third opinion to make sure no stone has been left unturned.

Question: How successful have the studies been so far on the RNS device and do you see it becoming more widely used than the VNS in the future?
Answer – Dr. Devinsky: We simply don't know yet. Brain stimulation will likely be an effective therapy - the question is if the current devices and stimulation techniques are the best. Again - we need more data - and it is coming in, but no answers yet.

For more information on the RNS System:

Question: How often do people have to go back for a second surgery and does this usually fix the problem?
Answer - Dr. Devinsky: It’s hard to give exact numbers. I would estimate that 5% of people have a second surgery. Of these, perhaps 75% get a significant reduction in seizures and 50% become seizure free - but these are very approximate estimates!

Question: What's the probability that occupational and physical therapy will be needed after surgery on the left temporal lobe?
Answer - Dr. Devinsky: It depends on the person and the case. In most cases, neither of these therapies is required.

Question: A person reported that their memory improved drastically since surgery, but he has to work very hard at improving it. Can you suggest some exercises that people with bad short term memory can do to improve their memory?
Answer - Dr. Devinsky: This is a very controversial area! It is not clear that memory exercises work - but they may. In part we may not have the right ones. We need more research. Neuropsychologists are very helpful in assessing memory function and helping to identify strategies to compensate for impaired memory.

For more information:

Question: What is the rate of depression after surgery?
Answer – Dr. Devinsky: Overall, there is a very significant reduction in depression after surgery. However, there is a new onset of depression in 5-10% of cases. This is usually mild and temporary, and when needed, antidepressant drugs are often very effective and can be stopped after 3-12 months

For more information:

Question: Do doctors know why it seems that mainly left temporal lobe patients are more apt to suffer with depression soon after surgery?
Answer – Dr. Devinsky: Interestingly, a large recent multicenter surgery study (funded by the National Institute of Health) found that depression before or after surgery was not more common in patients with left or right temporal lobe epilepsy.

Question: Are investigational drugs ever available to pediatric patients?
Answer – Dr. Devinsky: Yes.
Epi_help: The Food and Drug Administration does have specific rules about testing investigational drugs in children. However, it’s very important that this testing be done, as seizure medicines may work differently in children than in adults. The doses that children need and side effects that occur may vary.

For more information:

Question: Is there a certain life expectancy to people diagnosed with Lennox Gastaut syndrome?
Answer – Dr. Devinsky: I am not aware of many studies on the life expectancy of a large group of people with Lennox Gastaut Syndrome (LGS). However, I do expect that there is a shorter overall life expectancy - although some people with LGS live to an old age.

For information:

Question: If a person with Lennox Gastaut Syndrome is not a candidate for surgery, what else may help besides medications?
Answer – Dr. Devinsky: If surgery is not an option for LGS (although corpus callosotomy may be worth exploring) - then drugs such as felbamate and new drugs such as rufinimide (now being evaluated in research trials) may be considered.

For information on felbamate:

For information on rufinamide:

Question: If an MRI shows no abnormalities and the video EEG doesn’t show the location of seizures exactly and a person is going for frontal lobe surgery with strips and grids, is there a possibility that a person may not be able to have further surgery?
Answer – Dr. Devinsky: Yes, you want the surgical team to offer you the best choice. If they cannot localize where your seizures come from, your best option is not to do surgery. In the future, there may be new techniques to better map where seizures come from and there may be new therapies. So only consider surgery if the benefits clearly outweigh the risks.

Question: What are the exact tests that are done when grids are placed and what is done when they find the area of the brain where the seizures are located?
Answer – Dr. Devinsky: The main reason for grids is to localize precisely where the seizures come from. Another goal in some cases is to map functions such as language, movement and sensation. The doctor can then see if the seizure focus overlaps with critical areas.

Question: A person has a lump on the left hand side of their forehead and thinks it is from surgery, as well as jaw pain. How long does it take to recover fully from surgery?
Answer – Dr. Devinsky: The jaw pain is common from cutting of the temporalis muscle (this muscle goes to the jaw as well as the side of the head). The jaw pain usually improves after 1-2 months. The lump on the forehead may be a fluid collection. The surgeon should examine this, although it is likely benign and something to just watch.

Question: What is on the horizon that may help cure epilepsy someday?
Answer – Dr. Devinsky: Gene therapy, new drugs, brain stimulation, and drug delivery directly to the brain are a few very promising areas. But no "cure" is around the corner, in part because epilepsy is many disorders.

Question: If someone is seeing a neurologist for the first time and doesn’t know what to expect, do you have suggestions on how they could prepare for this visit?
Answer - Dr. Devinsky: Try to prepare a summary of your history (description or risk factors, seizures (from you and witnesses if possible), prior test results, prior therapies. Think about the questions you have ahead of time.

For more information:

Summary: We thank Dr. Devinsky for all his time and wonderful help tonight. This session covered a range of questions including the risks of uncontrolled seizures, what occurs in surgical work-ups, types of surgery, possible side effects and recovery periods. Since each person and their experience with epilepsy is unique, it’s important for people to talk to their own doctor about their concerns and questions. People whose seizures continue or who are considering surgery will need to have detailed testing by a neurologist and other health care professionals who specialize in epilepsy. These evaluations will give specific information about a person’s situation, what to expect, and what options may be considered.

For more information on types of surgery:

Edited by Steven C. Schachter, MD

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