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Considering Surgery
Tue, 02/01/2005 - 13:46I have recently been diagnosed with temporal lobe epilepsy. I have had these "spells" for about 3 years and never in a million years would I have imagined epilepsy! When I would have the spells it was a "de ja vu" feeling just likemany others have explained! I was started on Dilantin and then switched to Trileptal and then my doc added Keppra. I have looked into different treatment options for this and I am really considering have a temporal lobectomy. I will be traveling to Cleveland this Monday (31) for a consultation. Any advice or previous experiences with this type of surgery? Also I am experiencing MAJOR memory problems!! I cant remember hardly anything anymore! It's awful! I have to write everything down, and then I usually forget where i put the note! haha but seriously,... my memory is really bummin me out, especially when I have a 5 year old daughter!!
Any advice appreciated!!
April
Comments
RE: Considering Surgery
Submitted by tracul66 on Sat, 2005-01-29 - 12:00
Dear April:
My name is 'Tracey' & yes I've gone & had that proceedure done,,& what they're trying to do is find out which side of your 'Brain' is affected to 'Epilepsy'.It generally starts on one side of your brain,jumping to the other side,& this makes it difficult for them (Dr's) to tell.I had it done,but unfortunately the 'Seizures' started on the "Left-Side" which meant that they 'Can't' do the final proceedure (opperation) to 'Cure' it.The "First" proceedure,they opperate by putting 'tubes' inside your head (one on each side,(behind each ear) & they come out the 'top' of your head. They'll then keep you in 'Hospital' for mabe up to '10-days' (with NO medications so they can scan these 'Seizures') & then they'll tell you how it when ,when they see enough of these eppisodes.Unfortunately with me, they 'Epilepsy' effects the 'Left-Temporal-Lobe' so they can't do the final surgery (Left-Temporal-Lobe effects your memory & body functions) meaning if I had it done,I wouldn't remember 'Anyone' or be able to walk/stand etc.I'd basically be a 'Veggie'.But 1 thing you can remember is you're NOT alone,,I always forget things/daily,even if I write them down,I too forget where I put the notes.lol,,,Anyway,,,In the end, April, it is worth the try cause everybody's different. So Good Luck..!!!
Dear April:
My name is 'Tracey' & yes I've gone & had that proceedure done,,& what they're trying to do is find out which side of your 'Brain' is affected to 'Epilepsy'.It generally starts on one side of your brain,jumping to the other side,& this makes it difficult for them (Dr's) to tell.I had it done,but unfortunately the 'Seizures' started on the "Left-Side" which meant that they 'Can't' do the final proceedure (opperation) to 'Cure' it.The "First" proceedure,they opperate by putting 'tubes' inside your head (one on each side,(behind each ear) & they come out the 'top' of your head. They'll then keep you in 'Hospital' for mabe up to '10-days' (with NO medications so they can scan these 'Seizures') & then they'll tell you how it when ,when they see enough of these eppisodes.Unfortunately with me, they 'Epilepsy' effects the 'Left-Temporal-Lobe' so they can't do the final surgery (Left-Temporal-Lobe effects your memory & body functions) meaning if I had it done,I wouldn't remember 'Anyone' or be able to walk/stand etc.I'd basically be a 'Veggie'.But 1 thing you can remember is you're NOT alone,,I always forget things/daily,even if I write them down,I too forget where I put the notes.lol,,,Anyway,,,In the end, April, it is worth the try cause everybody's different. So Good Luck..!!!
RE: Considering Surgery
Submitted by meghan555 on Sat, 2005-01-29 - 12:11
HI, i have a 4 yr. old that was diagnosed in Oct. with the tempral lobe, and was put on about 5 diff. medicines, and nothing worked. She was having focal seizures about every 5 min. She had the surgery in Dec. and was doing good. The Dr. told us they were going to do a biopsy on the cells and they were certain that it would not show anything. She was having these staring spells and we didn'tt think anything of it, until the Dr. called and asked us to come into his office for a talk.
They got the biopsy back after three weeks and it showed that she has Rausmussen's Encephalitis. A very rare form and the prognosis is a couple of years. She just got out of the hospital from a week of treatments, and she had to go back in every month for a five day period, for her treatments. It all started out as being Temproal lobe epilepsy. I just wanted to let you know to have faith and i'm sure that you will be fine. They want to remove the rest of her right side of her brain in a few months. Our case is like i said very rare. Good lick to you and I hope and Pray the surgery will do you good. She has not had anymore focal seizures since the surgery though.
meghan555
HI, i have a 4 yr. old that was diagnosed in Oct. with the tempral lobe, and was put on about 5 diff. medicines, and nothing worked. She was having focal seizures about every 5 min. She had the surgery in Dec. and was doing good. The Dr. told us they were going to do a biopsy on the cells and they were certain that it would not show anything. She was having these staring spells and we didn'tt think anything of it, until the Dr. called and asked us to come into his office for a talk.
They got the biopsy back after three weeks and it showed that she has Rausmussen's Encephalitis. A very rare form and the prognosis is a couple of years. She just got out of the hospital from a week of treatments, and she had to go back in every month for a five day period, for her treatments. It all started out as being Temproal lobe epilepsy. I just wanted to let you know to have faith and i'm sure that you will be fine. They want to remove the rest of her right side of her brain in a few months. Our case is like i said very rare. Good lick to you and I hope and Pray the surgery will do you good. She has not had anymore focal seizures since the surgery though.
meghan555
RE: Considering Surgery
Submitted by ccs123 on Sat, 2005-01-29 - 11:01
Hi. I also have temporal lobe epilepsy. I've been living with this for the past 12 years. I can't share with you any experience with surgery but just wanted to say you're not alone, especially in the loss of memory department. It is a bummer especially having children (I have 3!) I wish you well with your consultation. Let us know how it goes!
Christi
Hi. I also have temporal lobe epilepsy. I've been living with this for the past 12 years. I can't share with you any experience with surgery but just wanted to say you're not alone, especially in the loss of memory department. It is a bummer especially having children (I have 3!) I wish you well with your consultation. Let us know how it goes!
Christi