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Medical Forum / Diseases and Disorders / Epilepsy / May 2005Surgery
Has anybody had/considered having surgery to stop their epilepsy? My specialist has suggested it but I'm in two minds whether to have it. Chris. > Has anybody had/considered having surgery to stop their epilepsy? My > specialist has suggested it but I'm in two minds whether to have it. Hi Chris, I had a benign tumor removed from my right temporal lobe in July 1999 and am seizure-free on a low dose of medication. There's a lot of testing to be done to determine whether you are a good candidate for surgery, and having the tests does not oblige you to go through with it. Surgery may not even be appropriate for you. If your specialist has suggested it, find out what the first step is, and remember that once you have all the information, only then can *you* make the choice. Feel free to email me privately. Liz > > Has anybody had/considered having surgery to stop their epilepsy? My > > specialist has suggested it but I'm in two minds whether to have it. > > Hi Chris, > I had a benign tumor removed from my right temporal lobe Me too, in 1993. But it was to remove the tumour, not to stop epilepsy. Mary Howdy Chris! Go for it. YOU CAN ALWAYS CHANGE YOUR MIND SOMEWHERE DOWN THE TRACK AND SAY NO! But this will at least get you started in the program. I considered it and I entered the program. Once you think that it may be a good idea you will go through an awesome legion of tests. Everything from psychological testing, to putting half of your brain to sleep so that it can be determined which functions are performed in each hemisphere, to long term monitoring, to the Wada test. They had me doing a long term eeg monitoring test. =========================== They fix you up same as they do for an eeg (run all of the wires into a box that you wear around your neck). put a monitor in the room and film you 24 hours a day. (They let me close the door behind me when I went to the bathroom but that was it.) Sponge baths in the bed. I was there for 10 days. Somebody else must always be in the room with you. Some programs provide this supervision. Other programs make you find your own people to sit with you (family, friends etc.) =========================== The test was inconclusive so they decided to do an INVASIVE long term monitoring. They drilled 2 holes into my skull (one at each temple) and stuffed some teflon strips through the holes, resting them flatly on the surface of my brain. (3 strips through each hole, 4 diodes on each strip) =========================== My doc told me that for surgery they had to know EXACTLY where the trouble was. A regular eeg is about the same as sticking your ear against the wall and trying to figure out, to the inch, exactly where the radio that you can hear in the next room is located. (Your skull is like the wall.) Invasive monitoring is like having 2 people in the same room as the radio (they can triangulate and get an exact location.) =========================== It was at this point that I was disqualified as a potential candidate because they found focii and triggers in both temporal lobes. =========================== The Wada was to be the next test on my list. (If I've got the wrong neme for this next test, please correct it.) In the Wada test they: 1. Take a tube and insert it into the vein on the inside of the thigh. 2. Run it up your main veins to your heart. 3. Run it through your heart. 4. Once it's through your heart, they run it up the arteries, through the chest, and up the neck into your brain. =========================== I was quite a way down the path of testing... maybe a year or a year and a half after I started the testing procedures before I was disqualified.  SignatureDave ???? "Noli illigitemi carborundum decendus" http://www.howdydave.com > > Has anybody had/considered having surgery to stop their epilepsy? My > > specialist has suggested it but I'm in two minds whether to have it. [quoted text clipped - 12 lines] > Feel free to email me privately. > Liz Hi Chris, I had my right temporal lobe removed in 1993 to try and cure my epilepsy. And I can honestly say, hand on heart I do not regret going down this path. I take only minimal dosages of Tegretol Retard which seems to keep everything under control. The only pitfall (for me, anyway) is bad memory but I think anyone who has Temporal Lobe epilepsy has that battle to fight anyway. If you would like more info, mail me direct. Andy >> Has anybody had/considered having surgery to stop their epilepsy? My >> specialist has suggested it but I'm in two minds whether to have it. [quoted text clipped - 12 lines] >Feel free to email me privately. >Liz Hi Chris, I had a left temporal lobectomy about 3 years ago. Before the surgery I had seizures a couple of times a year, about 6 months after the surgery I had a couple within three weeks of each other (never had them that close together) and since then I haven't had any. There are some side affects depending on what chunk of your grey matter they are chopping off so be sure of what they are before proceeding. If you want my story feel free to write me. Good luck. Mike > Has anybody had/considered having surgery to stop their epilepsy? My > specialist has suggested it but I'm in two minds whether to have it. > > Chris. Howdy AGAIN Chris! One of the things that worried me was memory loss. It was pretty much of a crap-shoot. They told me: "You will definately have some loss but we can't say what it will be. Worst case scenario: some of your education may go to waste, maybe you won't be able to recognize people, maybe your cognative thought process will be effected... We can't say for sure..." That gave me some tough alternatives to take into consideration. Especially since they said that there was no absolute garantee that my seizures wouldn't come back. After all that, I decided to go for it but was disqualified. SignatureDave ???? "Noli illigitemi carborundum decendus" http://www.howdydave.com > Has anybody had/considered having surgery to stop their epilepsy? My > specialist has suggested it but I'm in two minds whether to have it. > > Chris. I had surgery in 1993 to remove an AVM. Like Dave, I also had the WADA test. They were going to try and embolize (freeze) the area where the AVM was, however it was too progressed and ready to hemorage. Good luck. Jennifer > Has anybody had/considered having surgery to stop their epilepsy? My > specialist has suggested it but I'm in two minds whether to have it. > > Chris. Hi Chris, I had a left temporal lobectomy in Aug of 2001. It made my seizures worse and increased my memory problems. I now have both complex partial and generalized tonic-clonic seizures. I don't regret having the surgery though, I just had bad luck. Nick ***risk all, go extreme*** > Has anybody had/considered having surgery to stop their epilepsy? My > specialist has suggested it but I'm in two minds whether to have it. > > Chris. >Has anybody had/considered having surgery to stop their epilepsy? My >specialist has suggested it but I'm in two minds whether to have it. > >Chris. Go to my web site. I have all the info on my surgeries. And yes, they were successful. http://www.highego.com Hi. Unless you clicked on 'reply to sender and group' too, the original senders may not still be subscribed here. Their messages (2 different ones) you replied to were originally posted in 2003 (see below). They *might still be reading, as some people stay subscribed even if they aren't still active on the posting front. But they might also like to see your site, even after all this time, as I don't think we had more than 1 or 2 people who had had surgery back then. G./ ******************* >>Has anybody had/considered having surgery to stop their epilepsy? My >>specialist has suggested it but I'm in two minds whether to have it. [quoted text clipped - 3 lines] > Go to my web site. I have all the info on my surgeries. And yes, they > were successful. http://www.highego.com > >Has anybody had/considered having surgery to stop their epilepsy? My > >specialist has suggested it but I'm in two minds whether to have it. [quoted text clipped - 3 lines] > Go to my web site. I have all the info on my surgeries. And yes, they > were successful. http://www.highego.com I had a right temporal lobectomy 2 months ago and so far, it has been very successful (no seizures since then - knock wood). I can't wait until my neuro lets me reduce my meds - but he says I have to be seizure-free for at least a year first. > > >Has anybody had/considered having surgery to stop their epilepsy? My > > >specialist has suggested it but I'm in two minds whether to have it. [quoted text clipped - 8 lines] > neuro lets me reduce my meds - but he says I have to be seizure-free for at > least a year first. Dude, how's your post-op depression coming? Which meds are you on? I was started on tri-leptal & dilantin (ugh), but then switched to lamictal. What a godsend. No more drowsiness or mood swings (almost), plus it's got cognitive benefits too (How cool is that.) My neuro told me that anecdotally, people who have right tl surgery have a harder time with bad memories & depression. I think it has to do with the amygdala. I "remembered" and couldn't shake, not so much the memories themselves, but the emotional load that went with them. Amazing how all that crap came back (with a vengeance) even after 30 years. I "finally had to deal with all the anger/rage/betrayal/etc" for what happened when I was in foster care and of course priests are the greatest guys in the world, too. AREN"T THEY! Sunday was Mother's Day. I hadn't been to mother's grave in 10 years and never was at my dad's. I stopped at grandmother's & foster mom's, and my parents' graves too. I was a mess, but it felt really good in a way. It was my choice, I didn't want to hold anything back. I wanted to give what's left of my temporal lobe a real buzz. I swear it felt like it glowed I overloaded it with so many memories and emotions. But boy did I sleep peacefully Sunday night. Some of what you're describing below *might be related to stuff I'll add here about Temporal Lobes. Others might not be. But if you do searches, something that might help--> The Temporal Lobes used to be called 'The Seat of the Soul' since they're where we store "Who we Are" in--> so someone with Severe damage to 1 or both the T.Lobes may not be aware who they are, or at least during the szrs. (You might find info. under Temporal Lobe Seizures --older name, or Complex Partial Seizures -- newer term used at some sites that include T.L. but other seizure types too within that topic. ) *Most of us with T.Lobe seizures have varying levels of Memory trouble, since they're also the short term memory buffers where New Learning or Reading goes into Storage first, then it's filed and sorted to other parts for longer term memory. If it were severe enough you might not remember, e.g. how to get home or where you lived! 'Normal mid range', I think I had, affected my *not being able to read something short, and tell you *what I had just read --- try learn how to use a computer with *That !! :-< A place where it Really stands out, is have someone read you e.g. 4 numbers, then You tell them back to them Backward!! (Like 3, 7, 11, 23 --- not Long numbers.) Those ones Really stood out when I was first diagnosed and **before I had any seizures -- it was from the Damage in Right Temporal Lobe. I don't know how seizures or damage to *left Temporal Lobe might differ from that. /G. >> > >Has anybody had/considered having surgery to stop their epilepsy? My >> > >specialist has suggested it but I'm in two minds whether to have it. [quoted text clipped - 28 lines] > swear it felt like it glowed I overloaded it with so many memories and > emotions. But boy did I sleep peacefully Sunday night. > Some of what you're describing below *might be related to stuff I'll add > here about Temporal Lobes. Others might not be. [quoted text clipped - 35 lines] > >> at > >> least a year first. Go figure. I had _right_ tl surgery (that mesial bs). Pre-op I was left- dominant/right handed). Post-op I now write, tie my shoes, etc (hmm) left handed/right dominant. I even learned to juggle. My memory, sense of balance, and sense of rhythm are all improved. In hindsight, memory problems pre-op were probably caused by the Topamax <smile>. Not a joke;I remember the gestalt about people. My interactions with them in the past (long term mem). How I feel about them; friend/lover/foe; rather than the predicted post-op "flat affect"/indifference (limbic system). If I had a memory problem, it was what I call "facial" memory. Sometimes I wouldn't recognize people; wife, kids, parents, friends, etc. But I would recognize my wife from the shoulders down; by her fleece jacket, purse, and shoes. Or friends by what they were doing. The guy who stopped his bus when he saw me, then started running at me to give me a hug (cuz he hasn't seen me in a while) has got to be Tom. My boyhood friend is in a band. The band is named after him. When I saw them play once I didn't recognize him. (OK, there's two black guys up on stage. The black guy with the guitar has to be Freddy.) Told the neuro about it and was told: "That makes perfect sense. That's right where your scar tissue is." Post-op, I also didn't "lose music" or "religiousosity(sp)". Religious-osity is a fancy neuro word for belief in god/gods, reverence, awe, etc. If you want to get your dharma back in sync/feel like Jesus' son, there are ways, but you have to follow your own path. I think one of the organelles they pulled has to do with "substance" inhibition, or lack of it. It's been called, not by me either (google it) the "addiction hub/controller" of the brain; somewhere in the TL. Hey, my path leads to the desert. I have religious experiences all the time. I can become one with the godhead without even going to temple. I joke with my contemporaries that I have surgery just for the anesthetics. How special is that? oK. "Cortex" <BenThere@DoneThat.com> wrote in message news:MPG.1ceab692f14762fa989687@news->> > Go figure. I had _right_ tl surgery (that mesial bs). ... Post-op I... I > even learned to juggle. I'd love to juggle, have tried for 66 years ... no surgery or any other life experience or practice has helped :-( Well done! Mary > > I had a right temporal lobectomy 2 months ago and so far, it has been very > > successful (no seizures since then - knock wood). I can't wait until my [quoted text clipped - 19 lines] > swear it felt like it glowed I overloaded it with so many memories and > emotions. But boy did I sleep peacefully Sunday night. Glad to hear that you're coping. I had pretty severe depression for several weeks, but it seems to be getting better now(with a bit of counselling) so I don't have to resort to antidepressants. It's much like you describe - old painful memories coming back and making me feel all the emotions I had back then (20 years ago or more). I'm also a lot more sensitive to just about everything - even a song on the radio can make me start crying (my surgeon calls it the "sad movie syndrome"), and I'm a bit more irritable than usual. To answer your question, I'm on Tegretol 1000 mg/day. Chris, I had the VNS implanted in 1990 and the right hippocampus removed in 1999. The VNS is a good device, but my seizures didn't respond all that great with it. The brain surgery in 1999 has taken my seizures from over 1000/yr to about 1 maybe 2 a yr. I'll be glad to talk to you about it if you like. Chris |
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