Medication Vs. Surgery

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I am new to this forum and am hoping to gain some advice from those who are living with epilepsy or from parents of children with epilepsy. My 14 year old son has what we believe to be stage 1 neoblastoma in the anterior temporal lobe. Earlier opinions also mention cortical dysplasia. Whatever it is in his brain, it is causing him to have atypical absence seizures. We found the issue about 2 years ago. We've been attempting to control the seizures with medication. He's been on Keppra, Trileptal, Lamictal, Carbamazepine, and Topamax and various different combinations of these. The frequency gets better but they never truly go away. The doctor says we have other medications we can try - depakote, Lacosamide, zonisamide, eslicarbazepine, or felbamate. However, his doctor says the probability of success once you have failed 2 medications that are appropriate for the seizure type and maximally tolerated doses is only about 10% with additional therapies. Thus after we've failed 2 or 3 medications, we need to consider surgical removal of the neoblastoma (or whatever it is) to try to control the seizures. Obviously, surgery scares me senseless but I also don't want my son so drugged up that he is a zombie, nor do I want him to have serious side effects which I understand becomes a greater chance of happening the further down the medication line we get. I realize that no one can really tell me for sure what decision to make but I would like to hear from past experiences - good or bad - and if you have any insights you are willing to share. Thanks!

Comments

WelcomeSurgery can scare

Submitted by just_joe on Fri, 2017-03-31 - 17:47

WelcomeSurgery can scare anybody. Do research the medications more. yes side effects do happen. Meaning some people will have them even after their bodies get used to the medications. Today and in the last 25 years medications for seizure control have fewer side effects. Now a question to ask yourself is Do you look at the side effects of your over the counter meds?? They have them too. Do all of his doctors know all the medications he takes? The reason is one medication can and does counter another.. You have posted 5 different medications. How long was he on each? It takes time for his body to get used to the medication which is generally 4-6 weeks and during that time period is when those side effects show up and go away. That too is the time period it takes to build up the therapeutic levels needed in the body which is to stop break through seizures. So changing medications takes time and to see if the medications takes 4 weeks at least. If the number of seizures is being reduced then the medication is working and at that time dosage adjustments can be made. Another 1-2 to get the levels set then another month or so to see if the number of seizures is reduced more.There are many people like me that have tried many different medications and for many surgery is no option. My diagnosis was when I was your sons age. The number of seizures I was having was reduced. But then they went back up. At his age I needed adjustments 5 times in a years time. Changing from a kid to a teen with a growing spurt affects medications. I gained 35 lbs. and grew 10 inches in about 14v months. So a large weight gain affects the dosages because they work with size and weight. Today I still have a seizure every 8-14 days which last 2-5 seconds. I know I have them but my regular doctor didn't know I had one while I was talking to him. He had seen me in my seizures years ago on a different medication. There are about60 different medications designed to stop seizuresNeuroblastoma is a form of cancer that starts in certain types of very primitive nerve cells found in an embryo or fetus.Cortical dysplasia refers to a congenital (present at birth) abnormality in the brain’s development. Two different things.Did the neurologist explain either of the things and what would be removed? If not did they do an MRI?? Which would show which it was causing the abnormalities that start the seizures. For me it is scar tissue.

WelcomeSurgery can scare anybody. Do research the medications more. yes side effects do happen. Meaning some people will have them even after their bodies get used to the medications. Today and in the last 25 years medications for seizure control have fewer side effects. Now a question to ask yourself is  Do you look at the side effects of your over the counter meds?? They have them too. Do all of his doctors know all the medications he takes? The reason is one medication can and does counter another.. You have posted 5 different medications. How long was he on each? It takes time for his body to get used to the medication which is generally 4-6 weeks and during that time period is when those side effects show up and go away. That too is the time period it takes to build up the therapeutic levels needed in the body which is to stop break through seizures. So changing medications takes time and to see if the medications takes 4 weeks at least. If the number of seizures is being reduced then the medication is working and at that time dosage adjustments can be made. Another 1-2 to get the levels set then another month or so to see if the number of seizures is reduced more.There are many people like me that have tried many different medications and for many surgery is no option. My diagnosis was when I was your sons age. The number of seizures I was having was reduced. But then they went back up. At his age I needed adjustments 5 times in a years time. Changing from a kid to a teen with a growing spurt affects medications. I gained 35 lbs. and grew 10 inches in about 14v months. So a large weight gain affects the dosages because they work with size and weight. Today I still have a seizure every 8-14 days which last 2-5 seconds. I know I have them but my regular doctor didn't know I had one while I was talking to him. He had seen me in my seizures years ago on a different medication. There are about60 different medications designed to stop seizuresNeuroblastoma is a form of cancer that starts in certain types of very primitive nerve cells found in an embryo or fetus.Cortical dysplasia refers to a congenital (present at birth) abnormality in the brain’s development. Two different things.Did the neurologist explain either of the things and what would be removed? If not did they do an MRI?? Which would show which it was causing the abnormalities that start the seizures. For me it is scar tissue.

WelcomeSurgery can scare anybody. Do research the medications more. yes side effects do happen. Meaning some people will have them even after their bodies get used to the medications. Today and in the last 25 years medications for seizure control have fewer side effects. Now a question to ask yourself is Do you look at the side effects of your over the counter meds?? They have them too. Do all of his doctors know all the medications he takes? The reason is one medication can and does counter another.. You have posted 5 different medications. How long was he on each? It takes time for his body to get used to the medication which is generally 4-6 weeks and during that time period is when those side effects show up and go away. That too is the time period it takes to build up the therapeutic levels needed in the body which is to stop break through seizures. So changing medications takes time and to see if the medications takes 4 weeks at least. If the number of seizures is being reduced then the medication is working and at that time dosage adjustments can be made. Another 1-2 to get the levels set then another month or so to see if the number of seizures is reduced more.There are many people like me that have tried many different medications and for many surgery is no option. My diagnosis was when I was your sons age. The number of seizures I was having was reduced. But then they went back up. At his age I needed adjustments 5 times in a years time. Changing from a kid to a teen with a growing spurt affects medications. I gained 35 lbs. and grew 10 inches in about 14v months. So a large weight gain affects the dosages because they work with size and weight. Today I still have a seizure every 8-14 days which last 2-5 seconds. I know I have them but my regular doctor didn't know I had one while I was talking to him. He had seen me in my seizures years ago on a different medication. There are about60 different medications designed to stop seizuresNeuroblastoma is a form of cancer that starts in certain types of very primitive nerve cells found in an embryo or fetus.Cortical dysplasia refers to a congenital (present at birth) abnormality in the brain’s development. Two different things.Did the neurologist explain either of the things and what would be removed? If not did they do an MRI?? Which would show which it was causing the abnormalities that start the seizures. For me it is scar tissue.

Thanks! You bring up good

Submitted by allisonm_58dea15e9323f on Fri, 2017-03-31 - 18:09

Thanks! You bring up good points. On each medication, he was on them for several weeks. When he would have a breakthrough seizure, we'd either add another medication or taper off one and onto another one instead. I feel like we've given each medication and dosage a good chance to work. We've maxed out all of the dosages of the medications he's tried. He's not gained a lot of weight and he hasn't grown any taller either. But, I do hear what you are saying about adolescence and hormones and growth spurts. He has not had any major side effects from any of the meds since he went off Keppra. That one made him very angry, volatile, and depressed. I've just been told that some of the other choices as we go down the line can cause liver failure, hair loss, stroke, etc. I don't read all of the side effects for all of the medications I take, you're right. But, my meds are much less serious - tylenol, motrin, etc. At least in my mind, they are less serious. He's had multiple MRI's and there is very little growth in the size of the tumor but they do see some growth. One neurologist says it is a blip on the MRI which leads them to believe it is cortical dysplasia. The other neurologist says it is stage 1 neuroblastoma. Still, another neurologist says it could be scar tissue. Although, we can't recall any time where he's been injured in that area. They said they would try to remove as much of the tissue as they could safely but they really don't know much until they go in there and see exactly what it is. They talked about mapping the area really well. We asked about a biopsy but the procedure is the same whether they biopsy or remove it. They also said they'd put sensors on his brain to try to see where the seizures are originating. I can't remember what they called that part but sounds like standard procedure for seizure surgery. One neurologist says do the surgery; the other says to wait. I think that's why I'm having such a hard time figuring out what to do.

Thanks! You bring up good points. On each medication, he was on them for several weeks. When he would have a breakthrough seizure, we'd either add another medication or taper off one and onto another one instead. I feel like we've given each medication and dosage a good chance to work. We've maxed out all of the dosages of the medications he's tried. He's not gained a lot of weight and he hasn't grown any taller either. But, I do hear what you are saying about adolescence and hormones and growth spurts. He has not had any major side effects from any of the meds since he went off Keppra. That one made him very angry, volatile, and depressed. I've just been told that some of the other choices as we go down the line can cause liver failure, hair loss, stroke, etc. I don't read all of the side effects for all of the medications I take, you're right. But, my meds are much less serious - tylenol, motrin, etc. At least in my mind, they are less serious. He's had multiple MRI's and there is very little growth in the size of the tumor but they do see some growth. One neurologist says it is a blip on the MRI which leads them to believe it is cortical dysplasia. The other neurologist says it is stage 1 neuroblastoma. Still, another neurologist says it could be scar tissue. Although, we can't recall any time where he's been injured in that area. They said they would try to remove as much of the tissue as they could safely but they really don't know much until they go in there and see exactly what it is. They talked about mapping the area really well. We asked about a biopsy but the procedure is the same whether they biopsy or remove it. They also said they'd put sensors on his brain to try to see where the seizures are originating. I can't remember what they called that part but sounds like standard procedure for seizure surgery. One neurologist says do the surgery; the other says to wait. I think that's why I'm having such a hard time figuring out what to do. 

your doc is right about the

Submitted by Amy Jo on Fri, 2017-03-31 - 18:39

your doc is right about the odds of another medication working. what he may not have told you is that atypical absence is usually difficult to control, it is also associated with genetic epilepsies and encephalopathies. so the chances of the next med working is poor. but a successful surgery might not fix things either - how certain are they that the MRI findings are the cause of the atypical absence? I'm not familiar with generalized seizures stemming from visible lesions. if seizures are due to abnormalities seen on imaging, those seizures tend to be more drug resistant. I'm sorry that may not help you. I often try to reverse the situation - how would I cope if not trying something - it is perfectly reasonable to consider surgery with extreme care - but it is often the only intervention that improves quality of life by stopping or reducing seizures when there's a cause they can see. surgery requires a lot of testing for them to understand how successful surgery might be and testing can uncover complications that indicate surgery should not be done.my understanding comes from reading about our child's situation - she does have atypical absence but her seizures are controlled with meds and there is no encephalopathy. at first it was hard to find info on cases like hers so I had to read more than I wanted to about them.