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Anyone had surgery on left temporal lobe?

Tue, 04/10/2007 - 11:28
I am considering having a left temporal lobectomy and would very much like to hear from others who have undergone this testing and surgery. And, since you have undergone this surgery and experienced it all, I would like to ask you a couple things. I need to tell you my story so you know where I'm coming from. I am a 50 year old woman living in South Carolina. When I was 24 years old I was in college and working and had never had any type of seizure. Then one day while at work I started having grand mal seizures. I don't remember that at all; it's like the next thing I remember is I woke up in the hospital and it was 2 1/2 months later. I had been having many grand mal seizures every day. I was being administered megadoses of dilantin and phenobarbital. My mother believes in the natural cure for everything and insisted they give me shots of B6. Whether it was the B6 or perhaps the drugs started affecting me more, I don't know; but my seizures lessened and eventually I was able to go home. To make a long story short, Over the next 22 years I took different levels of dilantin and phenobarbital and I probably have only had a total of 5 or 6 more grand mal seizures, the last one being probably 10 years ago. But I still have what I call petit mal seizures. These are usually chills down the left side of my body, then I get confused; I know that I'm having a problem, but I can't think clearly and no matter how hard I try to carefully and slowly speak my words they come out what seems right to me . . . but I learn later, didn't make any sense at all. A couple of years ago my doctor retired and I had to find another neurologist to do my drug level testings and prescribe my drugs. This doctor wanted to try some other alternative drugs, so we tried almost all of them. I really hated Topamax, but they all had some major drawbacks; I wished I had never tried to switch from Dilantin. I think the doctor gave up and referred me to a epilepsy specialist in another city about 150 miles away. He tried some more switching and for the last year I've been on Keppra and Trileptal. I went to see him yesterday, not because of any new problems, but because I have to see him at least once a year to get my prescriptions. Last year this doctor determined that I had sleep apnea problems as well and got me sleeping with a CPAP device that has helped that. I think he is a good doctor; I've read articles by him and about him. But I guess I wonder if all doctors aren't making a living . . . just like the rest of the world. Yesterday he told me that I should be seizure free; but he is calling the events that I have now seizures. I guess they are still petit mal seizures, but they are usually just a period of confusion; I can't think right and I can't talk right. I usually don't even have the chills now. But yesterday he told me I shouldn't be driving, that he was legally bound to tell me I should not drive. How can I work and do all of the errands I have to do without driving? I'm married but we did not have any children; I guess I was always afraid I would pass on the tendency to have the medical problems I've had to a child . . . or maybe I was just using that as an excuse because I was never ready for the responsibility. I don't know, but I don't need to get off on another subject. What my neurologist told me yesterday was that they had pretty much tried all of the feasible anti-seizure meds and I am still not seizure free. He showed me, from my last MRI, the area on my left temporal lobe where the scar tissue is. I don't know how it became scarred, but I did ride horses and take a few falls when I was a kid; but I guess that's one of those things I'll never know. The part of my brain that is affected is where speech and memory are affected. I'm sure I don't need to be telling you this. What I have to determine at this point is what my best options are. When I went to the doctor yesterday, I was just going so I could get my prescriptions refilled. Now the doctor has increased my prescriptions to 1000 mg Keppra and 300 mg Trileptal twice a day; but he has already told me he would be surprised if that takes away any and all of my "problems". He suggested that I go through the series of tests that would allow him and a group of doctors to determine if I was a good candidate for a left temporal lobectomy. As I'm sure you can understand, this terrifies me. I'm living a fairly normal life now. I work full time, my husband and I just celebrated our 25th anniversary, and I just turned 50 years old. It's kind of like; why now? I don't want to mess up what I've got now! But then he throws in this part about me not being able to drive (like if I were to be driving and get in an accident that was determined to be my fault . . . whether or not I was having a seizure . . . I could be sued for everything I have. I do drive every day. And I've never had a seizure while driving, but I can understand where it would be a problem of course. And he hangs that carrot of being "able to be seizure free without taking medications . . . eventually". What I'm trying to decide is whether I should even consider surgery or not when all I'm having is petit mal problems. I have not had a grand mal seizure in pobably 10 years; maybe longer. I don't know if the benefits of being able to eventually get of the medications would be worth the risks I would be taking to have that kind of surgery. I would like to talk with other folks who have been where I am now. How did you decide? Were you still having grand mal seizures when you made that decision? And if you had not been, what do you think you would have done? Have you been completely seizure free; not even any confusion or memory problems? I do have some memory problems too, but I'm not sure surgery could actually "improve" that, perhaps it just wouldn't get any worse. I just try extra hard and I get by. I'm trying to figure out whether being seizure free - in my case, where I'm not having grand mal seizures, would be worth the risks I would be taking by having a left temporal lobectomy. Sorry to have gone on so long; I'm just looking for some input from someone who has been there. I would very much like to hear back from you. What do you think you would do - in my situation - knowing what you know?

Comments

have had test for a number of

Submitted by Shearer82 on Thu, 2017-10-05 - 10:11
have had test for a number of years now as tablets just are not working. I've had epilepsy since I was 13 months old and I'm now 39. The doctors have been pushing me to have surgery for years now but I've always held back as I'm a little scared to what I'll be like when I'm out of surgery. Once the brain is taken away there is nothing you can do to reverse time if it goes wrong, your brain is not a normal computer. Think carefully before making any decisions just like I'm doing, think of what the worst outcome could be and if you could cope with it physically and mentally. If you think you can then concider surgery. Good luck with it all :) 

Re: Anyone had surgery on left temporal lobe?

Submitted by EarthMonkey on Sat, 2008-04-19 - 23:53

I went through surgery on my left temporal lobe in 1996.  For me the results were very positive.  I was having daily seizures before going through surgery. 

Nuero surgery can definitly cause complications.  I stopped having seizures within two months of surgery.  I also has visual hallucinations for about six months after surgery, I have aphasia, I went blind in part of my periferal vision.  My memory improved from right before surgery (I can barely remember the months just pior to surgery).  I had very good memory when I went through the psych testing they do prior to surgery and I now don't have memory problems.

I don't think it is a minor surgery in any way, but if the seizures or the medication are effecting your life a lot then you might consider going through the testing at least.  You can always back out along the way.   

I went through surgery on my left temporal lobe in 1996.  For me the results were very positive.  I was having daily seizures before going through surgery. 

Nuero surgery can definitly cause complications.  I stopped having seizures within two months of surgery.  I also has visual hallucinations for about six months after surgery, I have aphasia, I went blind in part of my periferal vision.  My memory improved from right before surgery (I can barely remember the months just pior to surgery).  I had very good memory when I went through the psych testing they do prior to surgery and I now don't have memory problems.

I don't think it is a minor surgery in any way, but if the seizures or the medication are effecting your life a lot then you might consider going through the testing at least.  You can always back out along the way.   

This is great stuff! Very

Submitted by mindvalley on Wed, 2019-08-28 - 00:53
This is great stuff! Very honest and practical. I really enjoyed this post.https://blog.mindvalley.com/temporal-lobe/

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