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Temporal lobe tumor surgery questions

Tue, 02/27/2007 - 19:53
When I was in high school, I thought I was loosing my mind. I started having reoccuring instances when I would feel an intense deja vu and experience hallucinations, hear voices, but wouldn't remember anything afterwards. My heart would beat in my ears, I would move my right arm strangely because it would feel like it has fallen asleep. My face and chest would turn bright red. I would be unable to speak and if I did - it would be gibberish. I would get nauseous and get a massive migraine after this was done. These "attacks" were frequent and there was nothing specific that brought them on - eventually my family noticed. I was afraid to tell them because I thought they'd think I was crazy. After I was taken to a general doctor, she told me I was having "anxiety attacks" and sent me to a variety of specialists. A cardiologist diagnosed me with mild mitral valve prolapse. An MRI found an arachnoid cyst in my temporal lobe, and i was told both were harmless conditions that I could live with and were not causing my "panic attacks". I was also sent to a psychologist for cognitive therapy, but I only lasted one visit - I couldn't see how that could help me. Currently, I'm 26 and I have been recently hospitalized a few times from fainting (all over the city) and not being able to remember anything for about an hour. I was never admitted, and released each time from Emergency being told that I was "fine" and should see a psychologist. The fourth time it happened at work (at a meeting) and the on-lookers told me that I looked like I was having a seizure. I was finally sent to a neurologist and was diagnosed with temporal lobe epilepsy. I found out that I was having grand mal seizures. I also found out that the frequent "anxiety attacks" I was having over the past decade (diagnosed as such by the many doctors I saw) were actually partial complex seizures and not anxiety attacks at all. I also found out that the anachroid cyst was misdiagnosed as well and is actually a slow-growing benign tumor, currently the size of a golf ball, in my temporal lobe. After an EEG proved that the seizures were coming from my temporal lobe, I was put on Keppra and have not had any seizures in the past month. I now have the option of removing the tumor and seeing whether the epilleptic seizures stop or waiting a few more years and to see if it will get worse as the tumor grows larger. Another option is to have the surgery now and additional tests/surgery while I'm at it, where electrodes are implanted in my brain and the exact spot where the seizures are coming from is pinpointed (or so I was told), so that can be removed as well. I was told by more than one doctor that most likely the seizures will not go away after surgery. I don't know what to do. This has had a HUGE impact on my life, personal and professional, in the past ten years and now. Needless to say, I'm scared. Very few people know about this. If anyone has any suggestions/information, I would very much appreciate them. Has anyone had temporal lobe/tumor surgery? Where does one go from here? Thank you!

Comments

Hi Alexis, Here is info I

Submitted by solis on Thu, 2007-03-01 - 13:01
Hi Alexis, Here is info I read on arachnoid cysts: http://en.wikipedia.org/wiki/Arachnoid_cyst As you will note, it suggests removal ,asap, and those cysts are known to possibly cause seizures. I had my surgery a year ago. The areas slated for removal were the amgadalia & the hippocampus of the LTL. However, despite having all pre-surgery tests, it wasn't until they opened me up that the physician discovered a benign, slow-growing cystic tumor which existed since before I was born. It was also removed. http://www.childrenshospital.org/az/Site938/mainpageS938P0.html Given that the tumor was located in the exact area of the brain where my seizures originated, plus the fact I've had no seizures since surgery, makes it very convincing that the tumor is what caused my decades of epilepsy. Your tumor may be benign, but it is may also not benign when it comes to causing your seizures. I'd recommend you see an epileptologist (a neurologist that specializes in E). Some surgery info: http://www.epilepsy.com/epilepsy/surgery.html best wishes ~sol

Re: Hi Alexis, Here is info I

Submitted by alexis00 on Fri, 2007-03-02 - 16:41
If you don't mind me asking, were you on medication before and/of after surgery? If yes, how long after? Thanks!

Meds

Submitted by Sparkali on Tue, 2009-03-03 - 11:33

I'm not sure of the meds you are taking, but I have been taking Dilantin. It doesn't make me so sleepy that I fall asleep at work, or too tired to exercise.  I play on a ladies hockey team and love it. 

I have a 3.5 x 5 cm brain tumor, in the frontal lobe. I had a seizure, at work, and went through many tests. They diagnosed me with having a stroke to finally a brain tumor.  After the first seizure I was put on Dilantin, and never had another one for 2.5 years. Last December I was having hot flashes and weird dizzy spells, one everyday for three days. Finally I was out for lunch, I fell face first into my food. Thank God for husbands sitting close. I awake quickly and went for more tests.

They say it has not grown any larger and changing to a different med wouldn't make a differnce. But I have had a few more spells but never pass right out like I did at lunch.  Sress was probaly a huge factor. I have the option to get it taken out, Love our Alberta health care, but worry about the side affects that may come with it.

Can anyone share any after surgery affects with me?

I'm not sure of the meds you are taking, but I have been taking Dilantin. It doesn't make me so sleepy that I fall asleep at work, or too tired to exercise.  I play on a ladies hockey team and love it. 

I have a 3.5 x 5 cm brain tumor, in the frontal lobe. I had a seizure, at work, and went through many tests. They diagnosed me with having a stroke to finally a brain tumor.  After the first seizure I was put on Dilantin, and never had another one for 2.5 years. Last December I was having hot flashes and weird dizzy spells, one everyday for three days. Finally I was out for lunch, I fell face first into my food. Thank God for husbands sitting close. I awake quickly and went for more tests.

They say it has not grown any larger and changing to a different med wouldn't make a differnce. But I have had a few more spells but never pass right out like I did at lunch.  Sress was probaly a huge factor. I have the option to get it taken out, Love our Alberta health care, but worry about the side affects that may come with it.

Can anyone share any after surgery affects with me?

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