Waiting to have another brain surgury and having a lot of mixed emotions - Epilepsy Message Board

Sk8ter Girl 23 · 08-12-2007, 11:14 PM

I have a lot of feelings and emotions going through me right now and I feel like no one really understands. I've been having seizures for 16 years now and I'm sick of it. Waiting for doctors to help you is a huge waiting game and my emotions and insides are having a hard time handling the wait. Got any suggestions?

TopamaxKillsMe · 08-13-2007, 11:00 AM

I'm sorry. I understand how frustrating it is with doctors. I am going through my own private hell right now and sometimes I just want to scream because I don't really feel like anybody understands. I go online and have been getting support that way.

What kind of brain surgery are you considering? Are you on any meds right now to control your seizures? What are your doctors saying that is so frustrating? If you share more info, then maybe somebody here has experienced something similar and will be able to give you advice.

Hang in there.

Sk8ter Girl 23 · 08-13-2007, 09:22 PM

Hi thanks for the input. It's really hard to find someone who understands in a way. I am and have been on meds. for 16 years, now it's Keppra and Trileptal. I don't know what the surgury is called but they do a more serious EEG on you by putting the electrodes on your brain instead of on your head. Then they take your meds. away and you need 3 seizures to continue. After that they decide if it can be fixed or not and remove the equipment and that part of the brain. The odds are pretty good, 80% to fix or decrease the seizures and about 15% chance that the seizure focus will over lap. The doctors are driving me crazy by playing a waiting game and changing things and not telling me. They don't realize that they are playing with someones life and putting it on hold. I have a husband and a little girl so I'm trying to run a family. Doctors don't think about things like that and the process takes about 6-8 weeks in the hospital. I'm trying to keep my spirits up. Thanks again and it was nice talking to you, you were my first. Hope to talk to you again soon.

TopamaxKillsMe · 08-13-2007, 09:43 PM

Hey,

I went to the local epileptic foundation today and learned that they have a support group. I am actually going tomorrow. maybe your local EF has one. Something maybe you could look into? Hang in there. You will be okay.

Quote:

Originally Posted by Sk8ter Girl 23

Hi thanks for the input. It's really hard to find someone who understands in a way. I am and have been on meds. for 16 years, now it's Keppra and Trileptal. I don't know what the surgury is called but they do a more serious EEG on you by putting the electrodes on your brain instead of on your head. Then they take your meds. away and you need 3 seizures to continue. After that they decide if it can be fixed or not and remove the equipment and that part of the brain. The odds are pretty good, 80% to fix or decrease the seizures and about 15% chance that the seizure focus will over lap. The doctors are driving me crazy by playing a waiting game and changing things and not telling me. They don't realize that they are playing with someones life and putting it on hold. I have a husband and a little girl so I'm trying to run a family. Doctors don't think about things like that and the process takes about 6-8 weeks in the hospital. I'm trying to keep my spirits up. Thanks again and it was nice talking to you, you were my first. Hope to talk to you again soon.

Sk8ter Girl 23 · 08-15-2007, 08:40 PM

Hey thanks for replying. I went to the doctor yesturday and today I finally got a date and time. SEPTEMBER 17 2007 at 7:30!!!!!! She had answered a coulpe of my questions I had. I feel a little bit better. Thanks for your support.