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heya
- Thread starter jtk
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Welcome to the Coping With Epilepsy Forums
Welcome to the Coping With Epilepsy forums - a peer support community for folks dealing (directly or indirectly) with seizure disorders. You can visit the forum page to see the list of forum nodes (categories/rooms) for topics.
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thanks!
i haven't quite figured out the posting/thread set up on the forum. i read most of the 'bigman' going back to 2013?! i'm trying to patchwork it and the 'thank-you's' option, i don't get that either. i'm fumbling through. is there a ctl f option to find the posts having to do with search-words only?
i haven't quite figured out the posting/thread set up on the forum. i read most of the 'bigman' going back to 2013?! i'm trying to patchwork it and the 'thank-you's' option, i don't get that either. i'm fumbling through. is there a ctl f option to find the posts having to do with search-words only?
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Hey jtk, welcome to CWE. No surgery experience myself, hope others chime in.
Below are some posts/threads related to frontal epilepsy from the CWE archives. They aren't specifically about surgery, but they may be of interest.
http://www.coping-with-epilepsy.com/forums/f20/hi-im-new-here-frontal-lobe-epilepsy-5051/
http://www.coping-with-epilepsy.com/forums/f23/frontal-lobe-epilepsy-surgery-19762/
http://www.coping-with-epilepsy.com/forums/f23/eeg-results-frontal-lobe-epilepsy-16489/
http://www.coping-with-epilepsy.com/forums/f22/frontal-lobe-epilepsy-research-8849/
(BTW, I tend to search CWE using Google).
Below are some posts/threads related to frontal epilepsy from the CWE archives. They aren't specifically about surgery, but they may be of interest.
http://www.coping-with-epilepsy.com/forums/f20/hi-im-new-here-frontal-lobe-epilepsy-5051/
http://www.coping-with-epilepsy.com/forums/f23/frontal-lobe-epilepsy-surgery-19762/
http://www.coping-with-epilepsy.com/forums/f23/eeg-results-frontal-lobe-epilepsy-16489/
http://www.coping-with-epilepsy.com/forums/f22/frontal-lobe-epilepsy-research-8849/
(BTW, I tend to search CWE using Google).
Hi jtk,
Welcome to CWE! As seagull mentioned I would be more than happy to answer any questions for you about surgery. I have had surgery twice, the first time it was a video e.e.g. but they put the electrodes directly on my brain to pinpoint the areas of my brain that were triggering seizures. The second surgery I had done was in 1994 and it was ultra sound surgery where I had to be awake for the surgery and my surgeon removed 75% of my right temporal lobe and all of my right hippocampus and it reduced my seizures 50-60%. Before surgery I would have 300 or more seizures a yr. (absence and complex partial) as of last yr. I had only 65 seizures and they are a lot better than before surgery.
If I may ask what type of surgery are you looking into? I have heard that that gamma knife surgery is really easy for many people and often you can go home the same day you had surgery. All the Dr. does is use high frequency radio waves to wipe out the damage or scar tissue in the brain that's triggering the seizures and as long as you feel okay you can go home that day. Sometimes a person gets a lot of radiation from that surgery and they don't feel so good so they may stay overnight. Feel free to ask me and others any questions and take my word we will help you. Everyone here is a great friend and they have been a big help to me. Wishing you only the best and May God Bless You!
Sue
Welcome to CWE! As seagull mentioned I would be more than happy to answer any questions for you about surgery. I have had surgery twice, the first time it was a video e.e.g. but they put the electrodes directly on my brain to pinpoint the areas of my brain that were triggering seizures. The second surgery I had done was in 1994 and it was ultra sound surgery where I had to be awake for the surgery and my surgeon removed 75% of my right temporal lobe and all of my right hippocampus and it reduced my seizures 50-60%. Before surgery I would have 300 or more seizures a yr. (absence and complex partial) as of last yr. I had only 65 seizures and they are a lot better than before surgery.
If I may ask what type of surgery are you looking into? I have heard that that gamma knife surgery is really easy for many people and often you can go home the same day you had surgery. All the Dr. does is use high frequency radio waves to wipe out the damage or scar tissue in the brain that's triggering the seizures and as long as you feel okay you can go home that day. Sometimes a person gets a lot of radiation from that surgery and they don't feel so good so they may stay overnight. Feel free to ask me and others any questions and take my word we will help you. Everyone here is a great friend and they have been a big help to me. Wishing you only the best and May God Bless You!
Sue
hi sue!
I'm looking for left frontal lobe experiences post op. I know how unique we are- there's no way even if someone had my issue left frontal grey matter heterotopia (middle posterior gyrus) with a co-morbid diagnosis pre-op.
i'm left handed but i'm left dominant, despite the entire lobe having cortical damage due to FAS. right is right as rain!
My heterotopia is sitting on my language and critical/abstract functions and possibly visual and motor. all of those things scored either above average or superior on my neuro psych, twice. once in the 90's and once in march. my exec functions are weak, but still within normal range, so i don't worry so much about that- i already have a deficit. the intended location for resection is my go-to! i lose that, i've lost me. as bad as the meds are- and they're doing quite a number, i can't uncut my brain.
i'm also going for depth eeg- as you did, to map my seizures while in extended telemetry, pre-op. they were initially going to forgo it, but the surgeon wasn't confident in time constraints in mapping in the or pre resection, that an accurate mapping could be done. i'm localized and technology has caught up with imaging to diagnose beyond 'epilepsy' and my neuro-psych is maintained over that period. last extended non invasive eeg scored high points with 14 seizures and a useless tip of the status hat!
my plan is basically try- i can't tell you how many places i've looked for post op experiences in left frontal specifically. it's like everyone who's had it, just doesn't talk about it?! i've had a few convos with people who've had LFL due to brain tumours, but that's a different kettle of fish.
so i'm thinking i've read the studies, i understand the issues and risk- either find an experienced, been there-done that person or go with the flow until after the depth eeg and use that admission to get off my meds while medically monitored and if i'm not comfortable with their findings or level of unknowns pre-op, just stay off meds and go back to seizing -roll the dice style- as i was for the past 20 years. (i was medicated- though resistant, name the meds-i've had em) that was back in the 90's. hubs freaked out a few years back when i was down more than an hour and did the unthinkable....took me to hospital! i regret taking the meds.
i have focals, and tc's. auras as well (deja vu--full matrix) they've gotten to a point where they cluster and i go into status when the tc roll on. i keep waking up- or this is a terrible coma i'm in! id like my quality of life back. my eeg shows i don't technically sleep so i'm on clobazam to help let me rest, my tc's are nocturnal.i figure nix the aeds and maintain the minimal benzo to keep it all muted.
i don't even think i car about seizure freedom at this point. i never did before. there was a window where i was hopeful, but now it's more getting my life back. i want off the meds or something?!
the docs can't cite due to privacy and the studies don't address but for seizure and med freedom and slight notes on neuro psych, functionality and psychosis. not really a chit chat i'm looking for! though good reads.
if this strikes a chord- know anyone, any sitch, anything?! by all means- hit me up. i cannot express how much i'd appreciate some help in perspective. and thank-you. i'm glad to hear surgery made an improvement in your case. that's always good to see!
I'm looking for left frontal lobe experiences post op. I know how unique we are- there's no way even if someone had my issue left frontal grey matter heterotopia (middle posterior gyrus) with a co-morbid diagnosis pre-op.
i'm left handed but i'm left dominant, despite the entire lobe having cortical damage due to FAS. right is right as rain!
My heterotopia is sitting on my language and critical/abstract functions and possibly visual and motor. all of those things scored either above average or superior on my neuro psych, twice. once in the 90's and once in march. my exec functions are weak, but still within normal range, so i don't worry so much about that- i already have a deficit. the intended location for resection is my go-to! i lose that, i've lost me. as bad as the meds are- and they're doing quite a number, i can't uncut my brain.
i'm also going for depth eeg- as you did, to map my seizures while in extended telemetry, pre-op. they were initially going to forgo it, but the surgeon wasn't confident in time constraints in mapping in the or pre resection, that an accurate mapping could be done. i'm localized and technology has caught up with imaging to diagnose beyond 'epilepsy' and my neuro-psych is maintained over that period. last extended non invasive eeg scored high points with 14 seizures and a useless tip of the status hat!
my plan is basically try- i can't tell you how many places i've looked for post op experiences in left frontal specifically. it's like everyone who's had it, just doesn't talk about it?! i've had a few convos with people who've had LFL due to brain tumours, but that's a different kettle of fish.
so i'm thinking i've read the studies, i understand the issues and risk- either find an experienced, been there-done that person or go with the flow until after the depth eeg and use that admission to get off my meds while medically monitored and if i'm not comfortable with their findings or level of unknowns pre-op, just stay off meds and go back to seizing -roll the dice style- as i was for the past 20 years. (i was medicated- though resistant, name the meds-i've had em) that was back in the 90's. hubs freaked out a few years back when i was down more than an hour and did the unthinkable....took me to hospital! i regret taking the meds.
i have focals, and tc's. auras as well (deja vu--full matrix) they've gotten to a point where they cluster and i go into status when the tc roll on. i keep waking up- or this is a terrible coma i'm in! id like my quality of life back. my eeg shows i don't technically sleep so i'm on clobazam to help let me rest, my tc's are nocturnal.i figure nix the aeds and maintain the minimal benzo to keep it all muted.
i don't even think i car about seizure freedom at this point. i never did before. there was a window where i was hopeful, but now it's more getting my life back. i want off the meds or something?!
the docs can't cite due to privacy and the studies don't address but for seizure and med freedom and slight notes on neuro psych, functionality and psychosis. not really a chit chat i'm looking for! though good reads.
if this strikes a chord- know anyone, any sitch, anything?! by all means- hit me up. i cannot express how much i'd appreciate some help in perspective. and thank-you. i'm glad to hear surgery made an improvement in your case. that's always good to see!
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Hi jtk,
It sure sounds like you and I have a lot in common. They did the in depth e.e.g. on me to map out the areas of my brain that were triggering seizures and they thought it was only the right temporal lobe but when they did the main surgery on me they found damage deep in my brain on the frontal lobe and left temporal lobe that the testing never showed because it was so deep in my brain. Just like you I've been on over 10 or more seizure meds then my Epileptologist did a DNA test on me and found out I was drug resistant that's when I was put on medical marijuana (CBD oil) and I will say that has helped me a lot.
Just like you I've also had status seizures when I started taking Neurontin that drug messed me up terrible and so did Keppra. I know this may sound crazy but try putting coconut oil on your skin once or twice a day the coconut oil builds up ketones in a persons body and it helps reduce seizures for some people. I have a friend in his 50's who told me about it and it has helped me.
I've had all the neuro psych testing and they found that my speech was split on both sides of my brain instead of just the left. I had a chance of being blind or paralyzed when I went in for the surgery but I was willing to take the risk and I'm glad I did.
Have you looked into the RNS neuropace it's a device that's put into the brain that stops seizures in more than one area of the brain. I don't know a lot about it but what I have heard is all good and it can reduce seizures.
One thing I found out is that cell phones trigger seizures for me. If I'm at a store or work (school) and a lot of people are using their cell phones at the same time it triggers seizures for me. I had a special e.e.g. done and the Drs. purposely used their phones during the test but I didn't know it and each time they did the spikes went up on the e.e.g. showing I was sensitive to the frequency the cell phones use and it turn it triggered seizures.
I've never been able to drive and I've had seizures for 45 yrs. Take my word they have come a long ways since the 1970's when I first started having seizures.
Think about it and you may want to give the medical marijuana a try if you are interested check out healthyhempoil.com
Wishing you the best of luck and May God Bless You!
Sue
It sure sounds like you and I have a lot in common. They did the in depth e.e.g. on me to map out the areas of my brain that were triggering seizures and they thought it was only the right temporal lobe but when they did the main surgery on me they found damage deep in my brain on the frontal lobe and left temporal lobe that the testing never showed because it was so deep in my brain. Just like you I've been on over 10 or more seizure meds then my Epileptologist did a DNA test on me and found out I was drug resistant that's when I was put on medical marijuana (CBD oil) and I will say that has helped me a lot.
Just like you I've also had status seizures when I started taking Neurontin that drug messed me up terrible and so did Keppra. I know this may sound crazy but try putting coconut oil on your skin once or twice a day the coconut oil builds up ketones in a persons body and it helps reduce seizures for some people. I have a friend in his 50's who told me about it and it has helped me.
I've had all the neuro psych testing and they found that my speech was split on both sides of my brain instead of just the left. I had a chance of being blind or paralyzed when I went in for the surgery but I was willing to take the risk and I'm glad I did.
Have you looked into the RNS neuropace it's a device that's put into the brain that stops seizures in more than one area of the brain. I don't know a lot about it but what I have heard is all good and it can reduce seizures.
One thing I found out is that cell phones trigger seizures for me. If I'm at a store or work (school) and a lot of people are using their cell phones at the same time it triggers seizures for me. I had a special e.e.g. done and the Drs. purposely used their phones during the test but I didn't know it and each time they did the spikes went up on the e.e.g. showing I was sensitive to the frequency the cell phones use and it turn it triggered seizures.
I've never been able to drive and I've had seizures for 45 yrs. Take my word they have come a long ways since the 1970's when I first started having seizures.
Think about it and you may want to give the medical marijuana a try if you are interested check out healthyhempoil.com
Wishing you the best of luck and May God Bless You!
Sue
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