Community Forum Archive

The Epilepsy Community Forums are closed, and the information is archived. The content in this section may not be current or apply to all situations. In addition, forum questions and responses include information and content that has been generated by epilepsy community members. This content is not moderated. The information on these pages should not be substituted for medical advice from a healthcare provider. Experiences with epilepsy can vary greatly on an individual basis. Please contact your doctor or medical team if you have any questions about your situation. For more information, learn about epilepsy or visit our resources section.

Right Temporal Lobetom candidate?

Tue, 02/21/2006 - 14:54
Hi, I have been diagnosed with Right temporal lobe epilepsy. Up until now the seizures were all nocturnal and weren't a huge deal because they always happened during my sleep, weren't terribly frequent and I never had auras. However, now I have auras that turn into partial seizures and I actually had a breakthrough seizure while I was driving with my two kids in the car. Thankfully we are ok but the big problem is that I am allergic to nearly all the seizure meds and the ones I am using now don't seem to be effective. Seem to be running out of options! I am on Felbatol which causes me to sleep on average maybe only 3 or 4 hours a night which is enough to make anyone bonkers. And the Keppra they just added has caused such anxiety and mood swings that I am ready to just pitch it. I guess the big question is, since I don't have Grand Mals frequently, and the medication CAN control the seizures although with many side effects would surgery be my best option? I could go back and re-try all the meds I couldn't tolerate before but that would mean no driving and it might put my kids at risk to be home aloe with me if I have a reaction. Not to mention that I would have to give up working while I do all this. My EEG showed very clearly where the seizures are coming from, the MRI showed very little though. So I amjust at a loss. Don't know how to proceed. An6y advice would be so welcome!

Comments

Hi .. 1)I'd suggest you

Submitted by solis on Wed, 2006-02-22 - 02:12
Hi .. 1)I'd suggest you search out an epileptologist (a neurologist that specializes in epilepsy) asap Neurology includes the entire brain and epileptology focuses on the approx 40 plus types of brain seizures. (to find a specialist in epilepsy go to www.epilepsy.com and look at the side-by-side listings accross top of the page. Third from the right you'll find a way to search epileptologists) An epileptologist will be the best to test you and help you discover if surgery is an option. Oh..and re your seizure "However, now I have auras that turn into partial seizures and I actually had a breakthrough seizure while I was driving with my two kids in the car." I hate to be the one to pass on the sad news but as you had seizures your right to drive has already been lost. I hope you won't continue until this gets re-controlled. Sorry if this sounds mouthy, but I had epilepsy since I was 3yrs... I finally got my licence when I finally was controlled at over 40 (by an epileptologist not a neurologist), but I lost tht ability 10 years later when suddenly I seized while driving. I just had left temporal lobe surgery last month. So far so good. :) ~sol

Re: Hi .. 1)I'd suggest you

Submitted by maryhenley on Wed, 2006-02-22 - 06:18
oops, didn't make myself clear. I did see a specialist and he said I was a candidate for surgery. And yes I do know I am grounded as far as driving goes which when you live in the suburbs with no family to help is a total nightmare. Which is why I am trying to figure out if surgery is my best option. I can't seem to find much info about post-op life after the surgery. Like how long you are home and how long you will require help especially with two kids (one who is two the other is one) who are very active. I am currently under control with medication but the side effects are so awful that I don't know whether to pursue the medications I wasn't able to tolerate before or was allergic to or just perhaps go for the surgery. Any info on life post surgery would be great. And I appreciate any info at all! Thank you so much.

Re: Re: Hi .. 1)I'd suggest you

Submitted by solis on Wed, 2006-02-22 - 12:13
I live in a suburb of 2 career families with nobody else around during the day, so I can definitely appreciate your remark: "which when you live in the suburbs with no family to help is a total nightmare" After surgery: First month exhausted constantly and unable to open my mouth due to the fact that at the back of my jaw where the muscles for opening the mouth are, I had one line where the scull was opened. This month I can already open my jaw more, but I still wouldn't be able to open it enough to eat anything wide. Another temporary result (It can be disturbed for up to approx 2 years the surgeon said) is that my memory will be temporarily affected by the surgery. I'll be going to see a specialist to work on it. But I found out all this is normal.. (I'll try to find the page I had on the subject and post it here for you) But why worry about surgery until you have all the tests and find out you're a candidate as 3 out of every 4 people tested (with an operable type of epilpsy) aren't eligable for brain surgery? ~sol

Sign Up for Emails

Stay up to date with the latest epilepsy news, stories from the community, and more.