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TLE, and surgery, has anyone gone through this process?
Sat, 12/02/2006 - 13:41Hello, my name is Cody. I'm a 41 year old male who's been recently diagnosed with 'Right front temperal lobe epilepsy'.
I've had epilepsy since the age of 10 but only 3 Grand Mals during my life time until I fell a hit my head about three years ago. At present I'm completely out of control and on four anti-epileptic medications to try to control them. I can go a day or two with out a breakthrough and then I could have as many as seven or eight events in a day not including all the auras I fight off through breathing technics, etc.
My Epileptologist caught a bunch of these things on EEG and on camera at the epilepsy center in Saint Lukes hospital in Boise ID. I have brain damage on the right side of my brain that if possible will require a partial lobectomy if I pass a WaDa test.
If I don't pass the WaDa test I'll have V.N.S. surgery.
Has anybody had either of these procedures and if so how has it reduced your seizure activity?
Thanks for your input,
Cody
Re: TLE, and surgery, has anyone gone through this process?
Submitted by suebear on Mon, 2006-12-04 - 06:10
Hi Cody, I'm not sure how much help I can be but I had the left temporal lobe removed. Have had the seizes since the age of 3, thereabouts. I was actually going through Grand Mals all my life up until about the age of 15 or 16 maybe? They dropped to Complex Partials from there on but still stuck on a mystery up until yrs later when I came across a fantastic dr in my late 20's who had a brilliant idea to do some further testing just per chance to see what's going on. We'd done the same test before but they wanted to do it again and this time a little different and with a better more updated type of equipment. I got hooked up with Univ of Md hospital neurological team and went through a series of tests - at least a week's worth that I can remember, was a long time ago. The one test that I can remember is them doing the grid, that's all I can remember them calling it. Checked the motor skills, vocal, audio, etc. and weighed it against where the scar was on my brain. The most spookiest time of my life was when the section of my speech was interrupted and I couldn't talk. Even though it was for a split second I totally flipped a gasket! LOL! I laughed after the test was over but oh my goodness that was spooky. Anyway. The next day I was taken to the OR for surgery; they used the grid results as a map to make sure everything was done safely which is why it's done before hand. To answer your question about the reduction in seize activity the answer is yes. It took approx a yr to get things to slow down with the right mix of meds. I actually stopped having seizes for approx 5 yrs then abscence seizes came back for some reason, they're not sure why and we're working on that right now. However just the same I'm at a lower amount of seizes than I was. When I think about how many I'd had every day before I had the surgery and how many I have now, the results are 110% better. Every patient's case is different and every patient's brain pattern is different in how it works - it's human DNA make up and how we operate. A doctor has to make a plan on how they will handle your case and it may not be an exact plan as to how it will be for another patient but it will be the best one to work in your situation. The best thing you can do is ask a lot of questions even if you think they are silly or not that important. If you are unsure about something, ask it. If the doctor is speaking too fast, tell them to slow down. Sometimes doctors talk in terms as if they are talking to a collegue and forget so it is up to a patient to give the gentle reminder that we need a little bit more of an explination because we're not medical professionals. I wish you the best of luck and will keep you in my thoughts. Keep us posted if you'd like.