Hello. My mother has had epilepsy since she was 11 years old. She is now 57. She is in good health otherwise and she is finally taking steps towards determining exactly what type of epilepsy she has and seeing how it can be better treated. She has been on many different medicines and when she started taking keppra two years ago she did not have any seizures for about 9 months, which was the longest she has never had any. Her seizures only last about 45 seconds and occur about a month sometimes two months apart and when that happens, she has about 4-5 in about a weeks period time, usually in her sleep. Right now she is scheduled for a Video Sphenoidal EEG with Flouroscopy. She has had 3 previous in home EEG's and one pointed towards an abnormal reading in her right (might have been left) temporal lobe, but she did not have any seizures during the 3 days each time she was had the EEG. If she does not have a seizure during her hospital stay with the EEG will they still be able to get better results? Being older and wiser I have been trying to get my mom to move in the right direction to get her epilepsy under control and ultimately it is her decision if she wants surgery or not but I really hope she can get better information about her condition from more testing so it can be better managed.
First time posting. Surgery Questions.
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Hi, Mces, And welcome!
Your question is about an inpatient video eeg? I had one done, and didn't have a major seizure while in the hospital, just some small ones.
Your mom may or may not get better results from an inpatient video eeg. But the inpatient eeg is much longer, and much more likely to capture an event.
EEG's in general are not always accurate. Sometimes they have false positives, or false negatives. Check out this post: http://www.coping-with-epilepsy.com/forums/f23/anyone-diagnosed-neg-eeg-9050/#post92840
Since your mom's seizures are so far apart, they may not catch one while she's there. Or maybe they will. Hard to say. They might also catch more of the kind of abnormal brain waves that happen inbetween seizures. The big addition here is the video camera. If it catches one of her seizures it can help diagnose what kind it is.
When the EEG is inpatient, sometimes they take the patient off their seizure meds cold turkey in order to provoke a seizure. Not fun. But it usually works. Then they will get a chance to record it. Also, I've read about Nasopharyngeal leads that would go up her nose. Very very uncomfortable, but they say if someone has temporal lobe epilepsy not picked up on an eeg, that type of sensor might be able to record it.
Good luck to your mom. And you are a GREAT son (daughter? can't tell your gender!) to be looking for info for her, and to be helping her.
Your question is about an inpatient video eeg? I had one done, and didn't have a major seizure while in the hospital, just some small ones.
Your mom may or may not get better results from an inpatient video eeg. But the inpatient eeg is much longer, and much more likely to capture an event.
EEG's in general are not always accurate. Sometimes they have false positives, or false negatives. Check out this post: http://www.coping-with-epilepsy.com/forums/f23/anyone-diagnosed-neg-eeg-9050/#post92840
Since your mom's seizures are so far apart, they may not catch one while she's there. Or maybe they will. Hard to say. They might also catch more of the kind of abnormal brain waves that happen inbetween seizures. The big addition here is the video camera. If it catches one of her seizures it can help diagnose what kind it is.
When the EEG is inpatient, sometimes they take the patient off their seizure meds cold turkey in order to provoke a seizure. Not fun. But it usually works. Then they will get a chance to record it. Also, I've read about Nasopharyngeal leads that would go up her nose. Very very uncomfortable, but they say if someone has temporal lobe epilepsy not picked up on an eeg, that type of sensor might be able to record it.
Good luck to your mom. And you are a GREAT son (daughter? can't tell your gender!) to be looking for info for her, and to be helping her.
Jan4you
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Hello MCES..how wonderful you are to care so much about your mother.
About the inpatients video EEG they try really hard to induce seizures. They wean your off your meds and do sleep deprivation and such to induce seizures. Did they do all that when you mother had her video EEG? And sometimes they can see seizure activity on an EEG or view abnormal readings even if you do not have any seizures.
Instead of sleep deprivation as my husband was having at the time ONLY nocturnal seizures, grand mals, they wanted him to sleep but they took him off all his meds right away and POW he had 3 in a row. (seemed cruel to me at the time). But they learned a lot from that and he was then a candidate for brain surgery. He was in his late 40s at the time and had seizures since he was 6yo.
Let us know what you need ok hon? OR encourage your mother to join this forum and she can ask for whatever she needs as well.
Thanks for YOUR post,
Warmly, Jan
About the inpatients video EEG they try really hard to induce seizures. They wean your off your meds and do sleep deprivation and such to induce seizures. Did they do all that when you mother had her video EEG? And sometimes they can see seizure activity on an EEG or view abnormal readings even if you do not have any seizures.
Instead of sleep deprivation as my husband was having at the time ONLY nocturnal seizures, grand mals, they wanted him to sleep but they took him off all his meds right away and POW he had 3 in a row. (seemed cruel to me at the time). But they learned a lot from that and he was then a candidate for brain surgery. He was in his late 40s at the time and had seizures since he was 6yo.
Let us know what you need ok hon? OR encourage your mother to join this forum and she can ask for whatever she needs as well.
Thanks for YOUR post,
Warmly, Jan
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Hi mces and welcome,
I had a left temporal lobectomy back in 1990. I was 33 years old at the time and I was having 4-5 CP seizures a day, otherwise I would not have even considered surgery.
Before the actual lobectomy, I was in the hospital twice for observation of seizures. The first time, I was taken off all AEDs and had the VideoEEG to observe/record seizures. I was in the hospital for 6 days because they wanted the record at least 3 TC seizures.
The 2nd hospital stay, I had the surgery for depth electrodes on the surface of my brain to record seizures. The dr. wanted/needed more info to make sure they knew where my seizures originated from. I was in the hospital for observation 10 days that time. They gathered enough info from this hospital stay to go ahead with the lobectomy.
Six weeks after I went in for the lobectomy. I was in the hospital for 7 days. I came home with an excruciating headache, tho. I was only seizure free for 14 months, went into a deep, deep depression, suffer from memory loss. I could not have another brain surgery because the damage is too deep and I could end up literally speechless. I still suffer from depression to this day and my memory hasn't improved any. I had the VNS surgery back in 1998 to help eradicate the seizures. It has helped somewhat.
But my surgery took place years ago and they say it has much improved over the years and everyone is different.
Good luck in your mother's decision.
I had a left temporal lobectomy back in 1990. I was 33 years old at the time and I was having 4-5 CP seizures a day, otherwise I would not have even considered surgery.
Before the actual lobectomy, I was in the hospital twice for observation of seizures. The first time, I was taken off all AEDs and had the VideoEEG to observe/record seizures. I was in the hospital for 6 days because they wanted the record at least 3 TC seizures.
The 2nd hospital stay, I had the surgery for depth electrodes on the surface of my brain to record seizures. The dr. wanted/needed more info to make sure they knew where my seizures originated from. I was in the hospital for observation 10 days that time. They gathered enough info from this hospital stay to go ahead with the lobectomy.
Six weeks after I went in for the lobectomy. I was in the hospital for 7 days. I came home with an excruciating headache, tho. I was only seizure free for 14 months, went into a deep, deep depression, suffer from memory loss. I could not have another brain surgery because the damage is too deep and I could end up literally speechless. I still suffer from depression to this day and my memory hasn't improved any. I had the VNS surgery back in 1998 to help eradicate the seizures. It has helped somewhat.
But my surgery took place years ago and they say it has much improved over the years and everyone is different.
Good luck in your mother's decision.
Thank you all for responding. I believe my mom has tonic-clonic seizures, although they seem to be more of the tonic type. They usually are all the same. She will first move suddenly if sitting down and take a big deep breath. Most of the time she does have an epilepsy cry, but about 25% of the time she does not. Her muscles tense up and she does not really shake but her mouth does move. I have tried to explain to her that she probably is having grand mal seizures, which are tonic-clonic, but I believe she is very insecure, even at her age to hear the term grand mal and gets very aggressive and tells me they are not. I am not a doctor but I have done much more research on the subject and have taken all my pre-reqs for med school as well. All of her seizures last only about 45 seconds from start to finish, after that she is a little tired, has trouble speaking for a few min, but after an hour if you don't tell her she had a seizure sometimes she wont even know. Her doctor that she is seeing now seems to think a vns treatment would be more of a replacement or reduction therapy for her medicine and that if she is a candidate for surgery would be the better way to go in terms of a real "cure". After reading many comments on the website it seems that yes some people have been cured and some people have had a few years or so but then their seizures come back. Also my moms seizures in my opinion arent being controlled the best however they are seperated sometimes for two months, and a lot of posts I have read where people had surgurgy where having them daily or weekly. I want my mom to make the right decision, but in my opinion if surgery lessened her seizures to lets say 6 months apart in one repsect thats great, but in the other hand is it worth the potential negatives if it does not get rid of them.
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Definitely make sure you get a straightforward assessment for the neurologist of the risks/value of surgery. Usually it's only recommended if area of the brain where the seizures originate is small and well-defined, and an easily and safely be removed. It is the case that post-surgery results are mixed, with some people still requiring meds for seizure control. And scarring from the surgery can also lead to seizures. I consider surgery to be a last-resort method when seizures interfere with quality of life on constant basis, and all other treatment methods have been exhausted.
I don't think her seizures are affectly quality of life for her. I am really just concerned as she is getting older and don't want it to be worst for her having seizures when she is older, in case she falls or something. Aside from not being able to drive she functions just like any other person. She can watch a 3-D Imax movie and be fine, she works, she goes shopping by herself. I think at this point I want my mom to have test to determine exactly what is going on and if the seizure can be localized and defined to a specific definate area of her brain, then we will look further. Thank you all again.