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Live Question and Answer Transcript

Following the epilepsy show, Dr. Sean Grady and Dr. Susan Herman participated in a live, online question and answer session with viewers. Below is the transcript from this chat.

Linda:
As I watch the show tonight, I can only say that I must say thank you to Dr. Baltuch and Dr. Litt. I had the surgery almost 4 yrs ago. Thank you. You bring back such interesting and wonderful memories...

Dr. Sean Grady:
We appreciate your thoughts and glad to hear that you are doing well.

Kara:
My husband has epilepsy. He has been on many different medications and now Carbitrol, yet he still has seizures. He always bites his tongue and drools and always falls and hits his head, arm, and/or back. He's too heavy for me to catch and he always suffers from severe headaches afterward and apologizes.

His last seizure was in a company work truck and now his license is suspended. It's hard to take care of him and our young son on just my paycheck and the little check he gets now that a lot of his duties are restricted.What can I do to help stop these seizures? Is there something I can change in his diet or something that would help him? Please help us.

Dr. Sean Grady:
You may want to consider coming in for an evaluation. It sounds like your husband has a complex form of epilepsy. To arrange an appointment, call 1-800-789-PENN (7366) and ask for the PENN Epilepsy Center for an evaluation with a neurologist. If you would like to call this evening, our staff is available to take your information.

Jim:
Do you deal with children? My son will be 6 on 04/15. He has a seizure disorder and developmentally delayed. He has been on several medications without any success. We deal with Dupont Hospital for Children in Delaware.

Dr. Sean Grady:
There is a pediatric center at Children's Hospital of Philadelphia (CHOP) staffed by Penn neurologist from the PENN Epilepsy Center. The number to arrange an appointment is (215) 590-1000.

Betsy:
My dad is 80. Several years ago, he had a stroke, which triggered a severe seizure, and 2 small spots remain in his brain. He has been medicated, and still has seizures every few weeks or so, usually in pairs. He can't drive because the seizures aren't totally controlled. Would a stroke victim be treated similarly ato the epileptics on the show? His doctors seem to feel that medication (Neurontin and another) is enough. When he has a seizure, he drools and has tremors, but doesn't fall down. Is there any hope for him to be seizure free? He was originally diagnosed at U of P through the Emergency Room.

Dr. Susan Herman:
Seizures are very common after stroke. Depending on the type of stroke, seizures can occur in 10-15% of stroke victims. Usually the medications to treat stroke-related epilepsy are the same as those without clear cause. When the seizures don't respond to the initial medications, other medications can be tried. There are also surgical options such as the vagus nerve stimulator and epilepsy surgery. If his seizures continue to impair his quality of life, a consultation with a neurologist specializing in epilepsy may be helpful. For more information, call 1-800-789-PENN.

Kathy:
Is there any known link between epilepsy and trigeminal neuralgia? I have TN. My sister has two sons, one of whom has epilepsy. The son who does NOT have epilepsy has two daughters, one of whom has epilepsy. Thus, I wonder about a possible genetic link.

Dr. Sean Grady:
There are some forms of epilepsy that are inherited but TN is a separate disorder. Some drugs are used to treat TN and epilepsy.

Jill:
I had surgery in 1985 for an AVM. I still have mild seizures when I'm due for my period. I don't take any medication, because when I did I still had them. Is there something I could do each month to try and prevent them?

Dr. Susan Herman:
Many women note an increase in their seizures with their menstrual periods. Seizures that occur around the time of the menstrual period are called catamenial seizures. Most of the time, they respond to the same kind of medications as seizures that occur randomly. There are many different kinds of seizure medications, and you might do better with a different medication or a higher dose.

For menstrual-related seizures, there are specific treatments that can be helpful. Sometimes birth control pills can regulate hormones and improve seizure frequency. Usually, pills that contain progesterone are best. In addition, treatment with progesterone lozenges can be helpful. You should bring these seizures to the attention of your physician or neurologist, and if the seizures continue, request referral to an expert in the treatment of seizures. They can then help you to find the best hormone treatment

Eric:
What is the total cost of this surgery?

Dr. Sean Grady:
The cost of the evaluation process and surgical procedure is between $40,000 and $60,000 and is typically covered by insurance.

Joseph:
In 1981, at the age of 28, I began having nocturnal gran mal seizures. I have not had any seizures in a year without medication. Is it possible to "out grow" seizures?

Dr. Susan Herman:
Sometimes people go into remission for a prolonged period of time. If you have been seizure free for a year, you have a pretty low risk for recurrence. Unfortunately the risk never drops down to zero, but the longer you remain seizure free, the better.

Gabriel:
I was in an accident 33 years ago and as a result of a head injury I had seizures. I was prescribed Dilantin and have been taking 300 mg a day since then. How can I find out if I still need to take this drug? Will stopping the drug cause seizures? Is there a test I can take to find out if I would have seizures off the drug? 30 years ago I decided on my own to stop taking the Dilantin and shortly thereafter I had a seizure.

Dr. Sean Grady:
An EEG can sometimes determine if there is an active epileptic focus that would require medication. Stopping the drug will not necessarily cause a seizure. Consult with your neurologists before suspending an medications.

Brent:
I'm a 12 year old and I have seizures. How effective is Zonegran 100 on seizures? And will it stop it all together?

Dr. Susan Herman:
Zonegran is a new medication for the treatment of seizures that is very effective and has few side effects. For your age, Zonegran 100mg is a reasonable dose. The real test, however, is if you are seizure free. If your seizures are fully controlled and you're not having side effects, this is the right dose for you. For more information, call 1-800-789-PENN.

Susan:
My husband has had epilepsy of an unknown origin for 27+ years. He currently takes Dilantin, Tegretol and Mysoline - and still experiences breakthrough petit-mal type seizures. Would he be a candidate for surgical treatment?

Dr. Sean Grady:
Patients who are taking multiple medications and are still having disabling seizures may be good candidates for surgery. For an evaluation at the Penn Epilepsy Center, call 1-800-789-PENN (7366).

Eileen:
My adult son has taken tegretol for about 15 years. Does the medication have any affect on child bearing? His seizures appear to be the result of injury during birth, not a hereditary condition. Thanks for your input.

Dr. Susan Herman:
Tegretol is one of the most commonly used medications. Sometimes epilepsy or the seizure medications can decrease fertility, making it more difficult for both men and women with epilepsy to become parents. For men, some of the seizure medications can decrease sperm counts or motility. If there is trouble conceiving, a person with epilepsy should consider a fertility evaluation, then possibly a change in seizure medications. For more information, call 1-800-789-PENN.

John:
I have what is considered as an inoperable Astrocytoma grade 2 which causes seizures without the dosing of Keppra. I have MRI's. Is there someone I can contact to get a twenty-third opinion on my scans?

Dr. Sean Grady:
Penn's Brain Tumor Center can evaluate your condition. Drs. Dalmau or Rosenfeld are the experts for your condition. For an evaluation, call 1-800-789-PENN (7366).

Nora:
What is the best treatment for partial seizure epilepsy?

Dr. Susan Herman:
It's difficult to answer your question fully, since the answer depends on seizure frequency and on your particular circumstances. Almost all of the available medications are effective for partial seizures, and they have a variety of side effects. Common medications are Tegretol, Lamictal, Dilantin, Topamax, and Trileptal, but there are many others. For more information, call 1-800-789-PENN.

Karen:
I have had epilepsy for over 25 years now, and have been seeing a doctor in my area, but would like to know if I need his permission to make an appointment up here, or referral? I have been on all kinds of meds.

Dr. Sean Grady:
It depends on your insurance coverage whether you would need a referral. Talk with with insurance company for the details about your policy.

Laurie:
My daughter ook depakote for approxiamately 4 years. She is now seizure and med free but I have serious concerns that the depakote has adversely affected her immune system. Is this a possible side effect? She seems to get sick much more frequently thn my other children.

Dr. Susan Herman:
I'm not aware of any long-term side effects of Depakote on immune function. It's possible that the cause of the seizures also has made her more susceptible to infections. For more information, call 1-800-789-PENN.

Diane:
My son just went through surgery at CHOP in November for his seizure disorder. Unfortunately, he is experiencing seizures. Sometimes I think the frequency is less but I'm not sure. My question is: could he possibly have another surgery at another time, whether it be a year or 5 years from now, and it be successful at ridding him of seizures? He had both resection and transection.

Dr. Sean Grady:
Other surgeries are possible. Your neurologists at CHOP would be able to give you the best advice. Not knowing the details of your case is difficult, but a vagal nerve stimulator has recently been approved by the FDA.

Peggy:
My daughter is 10 years old and takes both Carbitrol and Topamax but still has seizures approximately once a month.The seizures do interfere with her life and cause her to miss school. Are there any other drugs that may be better for her that are safe for a girl of her age?

Dr. Susan Herman:
If seizures are incompletely controlled, a change in medications may be helpful. Often, seizures that respond poorly to medications may respond to other treatments, such as the vagus nerve stimulator or epilepsy surgery. For more information, call 1-800-789-PENN. Children's Hospital of Philadelphia has an excellent epilepsy center. Their number is 1-215-590-1000.

Stephanie:
I was wondering if epilepsy is hereditary?

Dr. Sean Grady:
There are certain forms of epilepsy that are inherited but the majority are due to trauma, tumors or unknown reasons.

Alyssa:
I started to have seizures when I was 10. I am 12 now. Can I stop having them without medicine or surgery?

Dr. Susan Herman:
Many people can stop having seizures on their own, but this is very difficult to predict. You may not need to take medications for your whole life, and if medications work, you don't need surgery. We usually will consider stopping medications if someone has been seizure free for at least two years on medications. For more information, call 1-800-789-PENN.

Jane:
Is the WADA test given before all types of epilepsy surgery?

Dr. Sean Grady:
The WADA test is needed only when the left temporal lobe is thought to be the focus of the seizures.

Maureen:
My son developed epilepsy at age 16. He's been diagosed with juvenile myclonic epilepsy. He was taking Carbatrol but is presently taking Depakote. What are his chances he'll outgrow the seizures? How long do you feel you need to be seizure free in order to drive? My son is 20 years old. I've been told that he doesn't have partial epilepsy, that his epilepsy is on both sides of the brain.Thank you!

Dr. Susan Herman:
It's hard to predict if people will "grow out of" seizures. It often depends on the seizure type or cause of the seizures. People can often stop seizure medications when they are seizure free for two or more years. The driving restrictions vary by state. For Pennsylvania, people must be seizure free for 6 months, while in New Jersey, it's one year. For more information, call 1-800-789-PENN.

Sarah:
How much will it cost to come to the PENN center and get a medical check on what kind of epilepsy one has?

Dr. Sean Grady:
It depends on the complexity of the seizure and whether hospitalization is required in the Epilepsy Monitoring Unit. The cost can be betweeen $20,000 and $30,000 but is usually covered by insurance.

Richard:
Can partial complex seizures turn into grand mal?

Dr. Susan Herman:
Seizures that start in one part of the brain are called partial seizures. If the person is awake for the whole seizure, it's a simple partial seizure, and if they are confused or lose consciousness, it's called complex partial. Both of these seizure types can spread to the whole brain and cause a grand mal seizure or generalized tonic-clonic seizure. For more information, call 1-800-789-PENN.

Janice:
My granddaughter is 2 years old. She started having seizures at 5 months. They have been difficult to control. 3 months is the longest she has gone seizure free. Recently she was tested for possible surgery. She only had one seizure in the hospital while being observed. The seizure are possibly from the hippocampus and or the temporal lobe. We do not have the final results of the test yet. Do you think she could be elligible for surgery? Do you think it would be a good idea for you to evaluate her? She lives in St. Louis, MO, I live in NJ. Thank you.

Dr. Sean Grady:
There is a pediatric center at Children's Hospital of Philadelphia (CHOP) staffed by Penn neurologists from the PENN Epilepsy Center. The number to arrange an appointment is (215) 590-1000.

Leslie:
My son is 12 and has the VNS implant for his seizures which hasn't had a big effect yet, he also went through the ketogenic diet, he had a corpus callosotomy and has tried every drug available without much success. Any suggestion? We currently see doctors at St Christophers Hospital.

Dr. Susan Herman:
I am sorry to hear about your son's difficult struggle with seizures. He has had many of the available treatments. There are new medications that are in trials now, and he might benefit from one of these. In addition, there are new surgeries that are being studied, such as deep brain stimulation and other devices for epilepsy. For more information, call 1-800-789-PENN. Children's Hospital of Philadelphia has an excellent epilepsy center. Their number is 1-215-590-1000.

Anna:
I was seizure free for 6 years and my seizures started all over again. I had 3 seizures in one week.

Dr. Sean Grady:
Sometimes seizures have a long, quiet period and then reoccur. A repeat evaluation by your neurologist would be important.

Ann:
My daughter has complex partial seizures, and she is on Depakote and Topamax. She hasn't had a seizure in six months but is experiencing side effects such as high Depakote levels, which make her very tired, and sometimes finds it hard to communicate and her thought process is not what it use to be. This is the sixth medication she's been on. Would you recommend surgery? We are at CHOP now.

Dr. Sean Grady:
The neurologists at CHOP do make recommendations for surgical treatments. You should check with them.

Larry:
I am the Larry in the show tonight. I would highly recommend the procedure because it has given me a great sense of security!!!

Margie:
I developed seizures at age 40. These seizures only occur when I sleep. They are controlled with 250 mg's of Dilantin before bed. Fortunately, I have been seizure free for 6 years, but the fear of seizures, the concern of daily medication is something that is always present. I was actually seen at HUP's Epilepsy Clinic, but no one could tell me why this has happened. Do you have any new information on these types of seiziures? Thanks for your help.

Dr. Susan Herman:
It's not clear why some seizures only happen during sleep. There are several studies that are ongoing about nighttime seizures, and new information is available all the time. It sounds as if your seizures are well controlled, and that's good news. It often takes a long time for people who have had seizures to stop worrying about the next seizure, but this will improve the longer you are seizure free. For more information, call 1-800-789-PENN.

Jeanne:
My 10 year old son has epilepsy from a cyst on the brain. His seizures are under contol w/Keppra but he has continuous spike and wave. Because of this the doctors say surgery. Is there a drug that could treat this? He does have some learning issues and speech is hesitated. We use NYU.

Dr. Sean Grady:
There is a pediatric center at Children's Hospital of Philadelphia (CHOP) staffed by Penn neurologists from the PENN Epilepsy Center. The number to arrange an appointment is (215) 590-1000.

Terry:
As you know Larry has has 2 seizures since surgery. I wanted to know if this was normal or does it mean that the surgery did not work? It was very disheartening when we got the call that Larry had another seizure. He has been through so much. We thought that he would be done with the seizure activity.

Dr. Susan Herman:
Surgery is unfortunately not 100% effective. In Larry's case, the chance of being seizure free was about 60-70%. Adjustments in medications may improve seizure control even in people who have seizures after surgery. We hope that surgery will improve his seizure frequency, even if he is not completely seizure free.

R:
I watch this first girl "Becky" and I kinda notice deja vu as she says she has the smells of oranges and burning before some seizures. I've had a deviated septum of the nose since diagnosage control has been on and off throughout the years, when I've had them I'm told I have said the same thing before seizures (those smells and a lesion). Lately, I've had migraines sometimes daily, sometimes weekly.

How possible is it that all my problems (from seizures to headaches) are somehow connected with my nose? It's a hard part to explain online, but it's like nasal passages are rarely clear. And I've always suspected this nasal bone could be messing with my brain. Is it possible any nasal problems diagnosed (or maybe missed?) could be my whole problem throughout life and epilepsy and migraines?

P.S. I've been a patient of penn 11 years and gotta admit they are great.

Dr. Sean Grady:
I think you should talk with a neurologist. Unusual forms of seizures do cause nasal congestion, although this could be quite uncommon.

Eileen:
My husband has epilepsy. He is a very unique case as he was diagnosed in 1995 with MS and then has encephalitis in April of 2000. Since the encephalitis he has had seizures. He does see the neurologists at Jefferson Hospital and they are always trying new medications. He has had a seizure study done, but they determined that the seizures were coming from many different areas of his brain. With the MS and seizures, he is now very disabled, but there does not seem to be many options.

Dr. Susan Herman:
There are many different options, such as trials of new medications, the vagus nerve stimulator, deep brain stimulation, and other types of brain surgery. For more information, call 1-800-789-PENN.

Blake:
I am 23 and have had seizures since I was 12. My medication threshold is very low and if I miss one dose of medicine I have a seizure. Which happened last August and I have lost my drivers license. Would I be a candidate for surgery? Thanks.

Dr. Sean Grady:
It is possible surgery would be appropriate for your seizures. For an evaluation at the PENN Epilepsy Center, call 1-800-789-PENN (7366).

Pam:
My daughter had viral encephalitis 5 years ago and was left with intractable epilepsy, she has been on every seizure med available and is presently on 3 and has the VNS. She does well when we can keep the seizures away for a few weeks but she then will have a cluster of 6 to 8 in a day, complex partials. She has been evaluated for brain surgery twice and is not a good candidate due to 2 foci. Are there experimaental drugs available at Penn they may help her? Thank you.

Dr. Susan Herman:
Yes, we have trials of several investigational medications. We also have a trial of a new surgical treatment, deep brain stimulation, which can be helpful even if the seizures come from multiple places in the brain or the site cannot be determined. For more information, call 1-800-789-PENN.

Jenny:
I started getting seizures when my third child was 2 weeks old out of the blue. Never had them before. I had 2 gran mal seizures that day and they found out that I have a small benign pineal cyst in my brain. I have been told the seizures have nothing to do with the cyst. They still don't know to this day why I have these seizures. Can you give me any thoughts on this?

Dr. Sean Grady:
Your doctors are right. It is a highly unlikely that a pineal cyst would cause seizures. Most causes of epilepsy are never discovered.

Debra:
My son is 16, has had myclonic/drop seizures since 4 months DPT, Focus found in R Parietal Lobe near Motor Strip...excised in Detroit, MI and Miami Childrens. Last surgery, 95. He's gone from 300/day to 3 or 5 every day, and now some are different...he is functioning at a 4 year delay, can read and do math multiplication and division, never a seizure free day....Can we get your opinion?

Dr. Susan Herman:
There are several other options for drop or "atonic" seizures, such as the vagus nerve stimulator, new medications, and even other brain surgeries such as corpus callosotomy, which can be very helpful in some cases of drop seizures. For more information, call 1-800-789-PENN. Children's Hospital of Philadelphia has an excellent epilepsy center. Their number is 1-215-590-1000.

Debra:
Thank you for your response on the web. He has had partial callostomy (no residual complications), has VNS since '88 (Jeff) same battery even... Very much looking forward to hearing from someone next week to see what new meds are even possible or the deep brain stimulation. Thank You, thank you....a loving mom of a terrific son who wants to be rid of these jumps soooo much...that's all he asked for his 16th birthday.

Jannette:
I have seizure for 9 years and I had a veeg done 2 times the first time they got a small seizure from me but they want 2 of them before they said what kind. They did not get anymore but they put me in the hospital again and that time they did not get any. What else can they do?

Dr. Sean Grady:
You may consider an evaluation at the PENN Epilepsy Center, call 1-800-789-PENN (7366).

Stephen:
I had the surgery you displayed on the show. Although my siezures are less frequent and less severe, I am taking three meds to obtain this control. Are there other possibilities.

Dr. Sean Grady:
Other options include vagal nerve stimulator. If you want to be evaluated at the PENN Epilepsy Center, call 1-800-789-PENN (7366).

Beth:
My boyfriend has epilepsy and has had no control with meds. Has had seizures for 27 yrs now. He is 37. He is now considering the vagus nerve stimulator. Are you performing that surgery there and do you recommend it? He does not have an appointment for this yet. Thanks.

Dr. Susan Herman:
We do implant the vagus nerve stimulator at Penn. Sometimes, we'll suggest another treatment after meeting and fully evaluating a patient. The vagus nerve stimulator can be very helpful, but I can't make a definite recommondation without a full evaluation. For more information, call 1-800-789-PENN.

Wilma:
My seizures are pretty much controlled. But I do have aura's once in a while, what are the cause of these and what can be done about them?

Dr. Sean Grady:
Those are the signs of abnormal brain electrical activity. The medications are preventing the activity from spreading throughout the brain. Sometimes increasing the medications can stop the auras. Talk with your neurologist.

Mike:
Would you please give me some information on a device I heard about called "neuropace". Will this precedure be available in the future at Penn? Are there any experimental studies in the near future with the neuropace at Penn.

Dr. Susan Herman:
The Neuropace device is investigational, and I can't give much information about it here. Penn will not be doing Neuropace trials in the near future. For more information, call 1-800-789-PENN.

Natalee:
My son was just recently diagnosed with complex partial seizures at CHOP and I was wondering if he could be qualified for surgery so as to avoid medications...he is 3 years old and they could not find out the reason for the seizures.

Dr. Susan Herman:
Not every patient with epilepsy is a candidate for surgery. It depends on the type of seizures and whether or not they respond to medications. If seizures are controlled with medicines, surgery may not be an option. For more information, call 1-800-789-PENN. Children's Hospital of Philadelphia has an excellent epilepsy center.

Floyd Bradley:
My son had surgery at Graduate in 1995, he was seizure free for 1 year, now he's back to square one. What's different now? He had corpus callosotomy and frontal resection. I notice Larry did not have the callosotomy in the film, why?

Dr. Sean Grady:
Vagal nerve stimulator may be an appropriate surgical approach depending on the present type of seizures. Larry did not have a callosotomy because it did not appear that his seizures spread to the opposite hemisphere.

Denise:
I am 36 yrs old. I was diagnosed with an vertebral artery aneurysm 7 years ago. I receive MRI'S yearly. I have symptoms like extremely painful migrains with distorted vision. I get very disoriented while this happening and this lasts anywhere from half an hour to an hour. Is it possible I am a candidate of having a seizure disorder?

Dr. Sean Grady:
These do not sound like seizures but rather a migraine variants.

Bonnie:
I think that I may have "absence" seizures. My 81 yo father was diagnosed with them about 10 years ago (as was one of his brothers), and both take meds which gives them excellent control. I'm 51 years old, and think that I had one at my last job--from which I was fired. It was at a Call Center, and all calls are audiotaped, and I heard myself talking to a caller on tape, in which I responded like it was a completely different concern than what this caller actually said. This is the only time that this happened, but I live alone and have been unemployed, so I wonder if I've had more of these without knowing it.

My question is---if I have an EEG done and I do NOT have one of these spells during the test, can you tell if I really do have seizure disorder?

Dr. Susan Herman:
It's possible that what you describe could be a seizure. If so, this is probably a complex partial seizure, where people become confused or lose awareness. An EEG records brain wave activity, and can record "spikes" even between seizures to help make a diagnosis. Sometimes an EEG is normal even if someone does have seizures, however. A full evaluation would be necessary to determine what kind of episode you had. For more information, call 1-800-789-PENN.

Ricardo:
At what age does this disease hit men and woman?

Dr. Susan Herman:
Epilepsy can occur at any age, but is more common in childhood and in the elderly.

Daniel:
I am 15 years old. I have tried several types of medication and have now had a vegus-nerve implant. I still have seizures but they are not as severe. I also have all types of seizures, is there anything else I can be doing to improve my situation?

Dr. Sean Grady:
For seizures as complex as yours, you should have a neurologist who specializes in the treatment of epilepsy. If you wish to have an evaluation at the PENN Epilepsy Center, call 1-800-789-PENN (7366).

Courtney:
Would you explain to me the difference between deep brain stimulation and the neuropace placement procedure?

Dr. Sean Grady:
Deep brain stimulators are placed deep within the brain mostly for Parkinson's disease or tremors. The neuropace device is placed over the surface of the brain for epilepsy.

Annette:
The last EEG I had I was told it was positive and later that day told it was negative. I have had partial complex seizures for many years but my EEGs have come up negative or a few with slowing of the brain waves so it is confusing how an EEG can read two ways. Could you explain this to me? Thank you.

Dr. Susan Herman:
It depends what you mean by "positive". For epilepsy, what we look for are "spikes," an area of irritability in the brain can that indicate a predisposition for seizures. In many people with seizures, EEGs can be normal, even if they have epilepsy. In that case, we may need to record brain wave activity DURING a seizure in order to make a diagnosis, similar to the procedure that Becky had prior to her surgery. This involves admission to the hospital for video-EEG monitoring. For more information, call 1-800-789-PENN.

Teresa:
I was operated for an AVM in 1999, developed staff infection and started having seizure. Had surgery to remove the bad tissue and still can't stop having seizures. The only medication I am taking is Phenobarbital due to having bad reactions to all others. Any suggestions?

Dr. Sean Grady:
You may be candidate for a seizure surgery. An evaluation at the PENN Epilepsy Center would be necessary to determine whether you are a candidate. For more information, call 1-800-789-PENN (7366).

Ann:
You didn't mention that after surgery, there is a timeframe still for medication to still be taken. And you also did not mention that surgery is not 100% guaranteed.

Dr. Susan Herman:
Usually people need to keep taking seizure medications for at least two years after epilepsy surgery. Sometimes, medications cannot be stopped even if surgery is successful. Surgery is not 100% percent effective, and the likelihood of becoming seizure free depends on where the seizures begin in the brain. This is fully discussed with all patients before the surgery. For more information, call 1-800-789-PENN.

Dee:
I feel like when I am driving my car I get a fright of highways and bridges, like when there are a lot of vehicles and I want to stop, I get such panic attacks that I blink my eyes tight and get this nervousness and know I can't stop. Is this seizure related?

Dr. Sean Grady:
Without details, it is very difficult to answer.

Jannette:
What kind of seizures are they when you have it in one part?

Dr. Sean Grady:
These are focal seizures that may cause symptoms in one part of the body.

Colleen:
Why are they unable to tell what is causing my son seizures? How far is the research in preventing seizures that you are working on? Can a person has seizures and live a full life without any problems?

Dr. Susan Herman:
About 50% of the time, we are not able to find the exact cause of someone's seizures. Our available tests are not sensitive enough to find the abnormal cells in the brain that are causing the seizures. This does not mean that seizures cannot be effectively treated. The research to prevent epilepsy is at the very earliest stages; so far we don't have any effective medications to prevent seizures from occurring. We have several trials ongoing now. For more information, call 1-800-789-PENN.

Steve:
I had the surgery done at Jefferson about 5 years ago. I was siezure free for about 6 months, then they came back, although less frequent and more mild. My neurologist has had me on just about every med. I am currently on three at one time with only control. Do you have any other suggestions?

Dr. Sean Grady:
Depending on the type of surgery, more options are available. If you want to arrange an evaluation at the PENN Epilepsy Center, call 1-800-789-PENN (7366).

Karen:
My sister was already at your center. She had the monitoring done for 5 days. She received a call from one of the doctors telling her they want her in on april 23rd, 2004 to put the electos in her head. After watching your show tonight, would that be the brain mapping??? She is the youngest sister of seven girls in our family and we are having a hard time understanding this problem. I work for Roxborough Hospital and I try to get as much info as I can on epilepsy, but my sisters and I are worried because she has been evaluated at your unit for about a year or so.....please do what you can to help her, please.

Dr. Sean Grady:
Brain mapping is done during surgery to identify a seizure focus or critical brain structures. What your sister is going to have done is have a electrodes placed over the brain to better detect seizure activity.

Maureen:
Thank you for answering my first question. My son has been diagnosed with Juvenile Myclonic Epilepsy. I have searched on the web to find more about this and have found no information. Can you provide me with info about this condition? I appreciate your help, Epilepsy has affected our entire family, my son just had to transfer to college closer to home where his brother attends to have a support system. Thank you!

Dr. Susan Herman:
Juvenile Myoclonic Epilepsy is a condition in which people can have several different types of seizures: absence (staring spells), myoclonic (jerks of the arms or legs), and generalized tonic-clonic (or grand mal convulsions). It is usually treated effectively with a fairly low dose of medications, but sometimes is more difficult to control. It usually requires medications for a lifetime in order to prevent seizures. This kind of epilepsy is hereditary and can run in families. A good site for epilepsy information is the Epilepsy Foundation of America website, www.efa.org. You can also check our website at pennmedicine.org/neuro. For more information, call 1-800-789-PENN.

Randi:
I have had grand mal seizures since the age of 15. I am now 52. It is under control with my phenobarbital. I do get them once in a while, and only when I am sleeping. I have never had a seizure while I was awake. Would the surgery you were speaking about help me?

Dr. Sean Grady:
It sounds like your seizures are under reasonable control and risks of surgery might outweigh the benefits.

Jenny:
Has the onset of epilepsy ever been related pregnancy?

Dr. Susan Herman:
Sometimes seizures can begin during pregnancy because of hormone fluctuations during pregnancy. At other times, a complication of pregnancy can cause high blood pressure (eclampsia) and seizures. This is not considered epilepsy. For more information, call 1-800-789-PENN.

Debra:
Thank you so much for taking my call....I am very interested in new medications or the deep brain stimulation. My sons foci was too deep to get it all....Can delaying any treatment cause further intractiblity? Done the Keto Diet, VNS, currently Felbatol and Lamictal...low medication threshold. He is so high functioning to give up! Are there ever too many operations?

Dr. Sean Grady:
The DBS is in clinical trial now. It may be worthwhile getting an evaluation. For more information, call 1-800-789-PENN (7366).

Rich:
My daughter is 12 yrs old. She started having seizures 2 years ago. She started with carbitrol, but it didn't work. Next was zonegran, then zonegran with lamictal. Now she is on lamictal of 950 mg a day. Even taking this much she still has partial seizures. EEGs show spikes during the day and during sleep. Her MRI shows a small spot in her brain. Will she ever be able to control these with medications? How many different ones can we expect to try before surgery becomes an issue? What kind of time frame is fair to give to trying medications before resorting to surgery?

Dr. Susan Herman:
We often consider surgery when trials of two or more medications have been ineffective. There's no time limit before surgery can be considered, and often early surgery is favored, before the epilepsy has a profound impact on education or lifestyle. For every patient, the risks and potential benefits of surgery must be carefully weighed. For more information, call 1-800-789-PENN. Children's Hospital of Philadelphia has an excellent epilepsy center. Their number is 1-215-590-1000.

Sarianne:
My son has Temporal Lobe Seizures. He was at another hospital. On his third seizure they found out he had a problem with both sides of the brain. Is there any help for him? Meds are also not working.

Dr. Sean Grady:
Sometimes surgical removal of one side can be effective for controlling seizures but this would definitely require a WADA test and the risks are much higher for complications. It is possible that a DBS would be effective. For more information, call 1-800-789-PENN (7366).

Jannette:
How long does it take to make appointment with the doctors?

Dr. Susan Herman:
The wait time for appointments depends on the severity of the case. Patients who need to be seen quickly can have a very short wait. For more information, call 1-800-789-PENN.

JA:
Have you ever done surgery on a person who is right-brain dominant which is the same side their seizures come from and they also have a scar on their right hippocampus?

Dr. Sean Grady:
Yes. This is where a WADA test is critical to determine the risks of memory and speech disorders as a consequence of surgery.

Jeff:
WADA's aren't necessary for frontal, right?

Dr. Sean Grady:
That is correct.

Ricardo:
So this hit is for Childhood but what child age can this hit for this disease?

Dr. Susan Herman:
Epilepsy can occur at any age, from immediately after birth until very elderly ages. The causes of seizures differ for different age groups. In children, it may be hereditary or be related to cerebral palsy or some other brain injury. In many children, however, no definite cause can be found. For more information, call 1-800-789-PENN. Children's Hospital of Philadelphia has an excellent epilepsy center. Their number is 1-215-590-1000.

Beth:
Can surgery be recommened if seizures are from the frontal lobe? Also, can frontal lobe seizures affect the hippocampus. Thank you.

Dr. Sean Grady:
Yes, although surgical results are not as good as with temporal lobe seizures. Frontal lobe seizures can effect the temporal lobe (hippocampus).

Rich:
My daughter is 12 years old. She has been on lamictal for a year now. It's her 3rd different medication. She still has problems when she doesn't get enough sleep or is very excited. My question though is that since she has started taking lamictal, she has mood swings. She can go from being an angel to bery antagonistic, then later back to an angel. Is this a coincidence that this started the same time as the lamictal, is this a possible side affect?

Dr. Susan Herman:
Many of the seizure medications can have effects on mood. Some can make people depressed or anxious, others can cause hyperactivity. On the other hand, some medications improve mood. If the symptoms started at the same time as a new seizure medication, they may be related. Consider discussing this with your daughter's neurologist. For more information, call 1-800-789-PENN. Children's Hospital of Philadelphia has an excellent epilepsy center. Their number is 1-215-590-1000.

Cahn:
My son has had seizures due to high fevers and then developed complex partial seizures. He had 18 seizures in one day while at CHOP, he was on dilatin but now on carbitol. He hasn't had seizures since but he twitches in his sleep and grinds teeth seems uncomfortable... can this be some seizure activity going on?

Dr. Susan Herman:
It's unlikely that these episodes are seizures, especially if they are not like his daytime seizures. Jerks during sleep are common in everyone, and are usually not seizures. Grinding of the teeth is also not likely to be a seizure. If you are concerned, discuss this with your son's neurologist; further testing may answer the question. For more information, call 1-800-789-PENN.

Margaret:
Does seizure activity usually lessen or heighten after a girl starts menstrating?

Dr. Susan Herman:
Seizures often seem to begin or to change in frequency around the time of puberty, when the menstrual period begins. This may be related to hormone fluctuations around this time. Some seizure types that begin earlier in childhood may go into remission in early adolescence. For more information, call 1-800-789-PENN.

Mandy:
Our son had La Crosse encephalitis and was diagnosed with complex partial seizures. Our current neurologist recently diagnosed with pseudoseizures, and I think in my heart he is wrong. He gave this diagnosis as his seizures were not showing up on EEG and he was not responding to meds. He is now med free and we see still the same things, like migraines daily, sleep problems shaking all over every limb involved and his eyes rolling back. He also will turn pale, left eye turns in, and he will stare and will not respond, at times will walk in circles. This is very frustrating, because our son has been ill for two years to no help. I appreciate anything you can tell me.

Dr. Susan Herman:
There are many episodes that can look like epileptic seizures but are not associated with abnormal brain activity. We call these episodes nonepileptic seizures or psychogenic seizures. The best way to make this diagnosis is with video-EEG monitoring, in which we can look at what happens during the seizure as well as record the brain activity. From your description of what happens during your son's spells, they could be seizures, but further testing may be necessary to be sure. For more information, call 1-800-789-PENN. Children's Hospital of Philadelphia has an excellent epilepsy center. Their number is 1-215-590-1000.

Rich:
How dangerous is surgery for a 12 yr old? My daughter's MRI shows a small spot on the right side of the brain (temporal lobe?) that wasn't completely developed like the left side. The doctors think this is the cause of her seizures. Medications seem to control the seizures to a point. However, she has continual problems during waking and sleeping hours. They say surgery is a last resort. also what is the probability of this being completely successful.

Dr. Sean Grady:
While any operation has risks, and you want to use medicine first, the risk of seizure surgery is relatively low. Surgery for temporal lobe epilepsy is typically the most successful of seizure surgery, with elimination of seizures in about 75% of cases.

Jannette:
What is a PET scan? Is that like a MRI?

Dr. Sean Grady:
A PET scan detects abnormal sites of glucose or oxygenation whereas an MRI detects structural abnormalities.

Sarianne:
Please refresh my memory about WADA test and what is a DBS?

Dr. Susan Herman:
A WADA test is an angiogram (dye study to look at the blood vessels of the brain). For the WADA, we use an anethetic medication to put half of the brain to sleep, and then we test the memory and language function of the part of the brain that is awake. We then do the same thing for the other half of the brain. This is necessary before epilepsy surgery, to make sure that we can safely remove the part of the brain that is causing seizures.

Deep brain stimulation (DBS) is a procedure in which electrodes are placed into the brain and give intermittent electrical stimulation. It is most commonly used for Parkinson's disease, but is currently being studied for the treatment of epilepsy. For more information, call 1-800-789-PENN.

Laurie:
Dr. Herman, thanks for the insight - the exact cause of my daughter's seizures was never pinpointed - she suffered from atonic seizures starting at age 2, was weaned off the depakote at 6, she also was taking carnitor along with the depakote.. any possible immune system issues with that drug???

Dr. Susan Herman:
I am not aware of any long term immune effects from carnitor.

Rich:
There are so many interesting and varied questions here. Is it possible to get a copy of these online, or some type of transcript. I can't print them but would like to look over them again. Thank you for your time. This is a great idea and a very valuable forum for everyone. Thank you all again!

Response:
You can find the transcript on pennmedicine.org. You can also order a free copy of this show on the web at or call 1-800-789-PENN (7366).

Becky:
Hey there my favorite doctors. I watched the show and wanted to thank you guys for everything! You guys are GREAT!

Karen:
Please tell me a little more about the electrodes procedure.

Dr. Sean Grady:
Typically, a window is made in the skull and a grid of electrodes is laid over the brain, along with some leads underneath the brain. The wires are brought out of the scalp and attached to an EEG machine during the monitoring period. This technique provides more sensitivity to seizures, as well as being more precisely localizing the seizure

Kathleen:
My husband was in the monitoring unit for over three weeks and had two seizures during that time and the Team was not able to determine the area where they were coming from. It was decided that he was not a surgery candidate because of this fact and that his seizures were somewhat controlled by medicine. He is still not seizure free. He was diagnosed with epilepsy when he was three and is now 37. What is your opinion on the mapping procedure that Larry had done for my husband? And if you beleive it to be a good prospect would you be able to meet with us on April 30th when we have our appointments at the PENN Epilepsy Center?

Dr. Susan Herman:
In order for us to do a mapping procedure, we need to have some information about where in the brain the seizures begin, since we can only put the electrodes over a small part of the brain. We can often get this information from an MRI, a PET scan, or from video-EEG monitoring. If your husband is not seizure-free, further evaluation will be needed to see what other treatment options are possible. Make sure you bring all of his previous records and EEG monitoring to your appointment at Penn. All of the physicians in the PENN Epilepsy Center have expertise in surgical treatment of seizures, so you should be in good hands. For more information, call 1-800-789-PENN.

JT:
Thank you for this online experience. I learned a lot more about the seizures I've been having by reading some of these questions and responses.

Jannette:
How will you know if someone needs to get a V-EEG done? I have had a 24hr EEG and it showed that I had 12 seizures in one day.

Dr. Susan Herman:
Video-EEG monitoring is done if there is a question about whether someone's spells are epileptic seizures, or for evaluation for epilepsy surgery. If your seizures were recorded on a 24 hour EEG, this is similar to the information we would get from video-EEG monitoring. In some people, we do the monitoring in the hospital because their seizures are infrequent and we may need to reduce their medications. This is done in the hospital for safety reasons. For more information, call 1-800-789-PENN.

Brittany:
What other tests are there for hard to detect seizures, perhaps them that are deep in the brain??

Dr. Susan Herman:
Sometimes we can use a test called a SPECT scan (a nuclear medicine test) to detect seizures that don't show up well on the EEG. This involves injection of a radioactive dye into the veins during a seizure. The dye goes to the region of the brain that is causing the seizure, and we can then localize the seizure focus. Sometimes an MRI may show an abnormality, even if the seizures don't show up well on EEG. For more information, call 1-800-789-PENN.

Karen:
Dr. Grady, thanks for your time and answering my questions. It's nice to know doctors like you and your staff are available for all of us.

Becky:
I was also in the show tonight and wanted to say this was definitely a life changing experience. My life is definitely different now, thanks to Penn.

M. Sean Grady, MD, Chair, Department of Neurosurgery, University of Pennsylvania Medical Center - Hospital of the University of Pennsylvania

Dr. Grady earned his medical degree from Georgetown University. He completed his internship and residency in Neurosurgery at the University of Virginia School of Medicine. Dr. Grady was recognized in Philadelphia Magazine's May 2002 "Top Docs" issue as well as The Best Doctors in America 2002 publication.

 

Susan Herman, MD, Assistant Professor of Neurology, University of Pennsylvania Medical Center - Hospital of the University of Pennsylvania

Dr. Herman earned her medical degree from Columbia University of New York City. She completed her internship, residency and epilepsy fellowship at Presbyterian Hospital, NY. She is a member of the American Academy of Neurology and the American Epilepsy Society. She is the Director of the Epilepsy Monitoring Unit at the Hospital of the University of Pennsylvania.

 


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