Temporal Lobectomy? - Epilepsy Message Board

moody25 · 11-07-2008, 09:54 AM

Hi all, I'm new here. I'm 27, and was diagnosed with epilepsy about 7 years ago. I was first prescribed keppra, which didn't control my complex partial seizures, then put on dilantin, which I subsequently found I'm allergic to, and then prescribed topomax.
The topomax worked well initially at controlling the seizures, but recently the seizures have come back full force (and then some). My neuro upped the dosage, added keppra back to my regimen, and still no help. The side effects between the two drugs are nearly as bad as the almost non-stop seizures, and now the neuro is planning to send me to an epilepsy center in hopes that I'll be a candidate for surgery.
He specifically mentioned a temporal lobectomy. Has anyone had any experience with this, and if so, what was your experience like? I've done as much research as I think is possible, and have my next appointment with my neuro a week from today.
The last MRI (a few weeks ago) showed a spot on my brain, the EEGs all come back abnormal, and clearly, something's not quite right. I'm hopeful that an epilepsy center could provide more answers than my neuro has, but not sure I want surgery, necesarily, yet I know I can't continue to live with these seemingly never-ending seizures, also.
I'm incredibly frustrated, and yet, I can't seem to think well enough or coherently enough to form the questions I know need to be asked. I go armed with notes and written questions, and yet, the words don't come... and now, I'm babbling...
Thanks in advance to everyone!

030free · 11-07-2008, 10:42 AM

Hi and welcome to the boards. I was diagnosed with seizures 15 yrs ago, and I underwent Right Anterior Temporal Lobectomy April/2008 (age 26), and so far I been seizure free. Its not a easy decision to make, It wasnt for me, but it was the best decision I could have made in my life. To begin, they will need a series of test done to figure out what type of seizures you have and what location of the brain they are coming from. To decide wether you are or not a candidate they must make sure that surgery is not going to effect your motor skills, speech, or memory. Do you know what lobe your seizures arise from? most common surgeries are Right temporal because most the memory, motor and speech is located on the left temporal lobe, although I know many people that have undergone left temporal lobectomy, but it holds more risks. Since your still unsure of the specifics, we wont discuss the surgery yet. Right now the main focus is to find out where the seizures are coming from, which type it is, and what are the chances of surgery being a solution for you compared to other methods like VSN... I wanted to surgery to get off meds, but I still have to wait 2 yrs post-surgery to tamper off the meds.. Test will take months, so continue to study, post any other questions you have, and keep us updated.. I wish you the best and hope you are a candidate

Laura

moody25 · 11-07-2008, 06:02 PM

Thanks for your reply!
I'm not positive about my seizures' origination, but I know my neuro thinks they're starting in my left temporal lobe, which doesn't sound as promising, from the research I've done, and from the few people I've found who have had experience with the procedure.
I say I'm not positive because there's a communication breakdown sometimes between the neuro and myself... he can have a gruff and brusque bedside manner, and while I don't need to be coddled, the last thing someone with memory issues needs is to be brushed off... anyhow, that may be a topic for another thread!
Hopefully if he does send me to the epilepsy center, at the very least, the tests there will help to clear up the unanswered questions, and even if I'm not a candidate for surgery, I'll at least have more answers.
Thanks again, and I'll definitely be using this board now that I've found it!

alana1953 · 01-08-2009, 02:26 PM

Had an MRI and EEG done this week. My doctor said that I was not a candidate for surgery because it is not coming from one certain area of my brain.

She did change my meds, I have had epilepsy for 42 years and was controlled with Dilantin and Phenobarbitol. However must have either gotten used to the medication or with my age is no longer effective.

Now on Keppra and Penobarb..no more Dilantin. The Keppra gives me mood swings if taken on an empty stomache; but haven't had a seizure for monthes

030free · 01-14-2009, 10:39 PM

alana 1953 Im sorry to hear surgery wasnt an option for you, but Im glad the new meds are working for you. I been on Keppra and trileptal for a few years now, and I take them on a full stomach to avoid any side effects, so far so gd. wish you the best of luck...

Moody25, have you been reffered to another E center yet?

Laura