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.

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

Re: Temporal lobe tumor surgery questions

Submitted by Lauren Carthy on Mon, 2010-11-08 - 08:52
Hi all, My husband (Antony) was diagnosed with a benign tumor in his left temporal lobe on 6 Nov. 2008. We were told it was inoperable as it is 4cm x 6cm and is in the language area of his brain. We have had many ups and downs with controlling his seizures - he has only had 1 grand mal seizure (after which we discovered he had a tumor), but many partial complex seizures (what we call "auras") - he had around 4 to 5 auras per day without his medication. Antony has also been diagnosed with Steven Johnson's Syndrome, which basically means that he is badly allergic to most anti-convulsant drugs as well as all asprin-based drugs. This has posed a major problem for us, as it's been very difficult to find the right drugs. He is now on Attivan (a relaxant) and Urbanol which seems to be working. We have been monitoring his tumor for 2 years now and MRI scans tell us that it has been growing - in 2 years it has grown 1 cm all round. This news has forced us to take action and he is now going for brain surgery in 3 weeks time. We shopped around for the right neurosurgeons. We got opinions of about 5 neurologists & neurosurgeons as well as around 3 epileptologists and now have found the best in South Africa - Dr Melvill (neurosurgeon) and Dr Butler (epileptologist) in Cape Town. I'm extremely worried about his surgery as the risks (i'm told by the doctors) are very high. Apparently Antony may have to re-learn his speech and there is a possibility that he may lose his eyesight in his right eye. Antony is a computer programmer. He may lose his language ability. maybe i'm panicking a bit too much, but I cannot stand the thought of him not being able to do what he loves most. Whilst looking for the right neurosurgeon, we came across some real looney's who said that Antony had a cyst - not a tumor -- even though 3 other doctors had confirmed that it was a tumor! Some of the neurosurgeons just wanted to cut him up and have him for breakfast (not really, but it seemd like it!).. We were told that his tumor was inoperable and that he had to go for radiation therapy -- turns out that radiation therapy would have damaged him more than do any good! It's hard to say who knows more about these things - especially when all the neurosurgeons sing a different tune! Hopefully things will turn out okay though. Good luck to you all and let's keep things updated so that we can compare circumstances! Lauren Carthy

If they can remove it request

Submitted by Bellav on Fri, 2020-05-01 - 23:08
If they can remove it request it. 

Re: Temporal lobe tumor surgery questions

Submitted by Bazbuz33 on Tue, 2011-08-09 - 15:30
7 weeks ago I had a DNET removed from my left temporal lobe. Over these weeks I've been tired and struggling to get back to myself. I did have simple partials and upto now they have stayed away. I've tried getting back to being me running and being relaxed. Recently I've been very tired when I've done stuff physically and mentally and my emotions are all over the place, but my language and speech and memory is more or less normal. I'm just wondering if anyone else has had this and how long it took them to recover, I've been told 6-8 weeks and i'll be back to work yet on other things I've read it's 3 months. I know I can't play soccer at least until I see the surgeon in oct to get the ok. Last night my sleep was bad and all day today I was light headed and dizzy, I'm just really confused and feel lost

Sign Up for Emails

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