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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, I was on AEDs for

Submitted by solis on Fri, 2007-03-02 - 17:57
Hi alexis, I was on AEDs for decades before surgery and one year afterwards. The daily medicine dose is now being slowly lowered. I'll be completely off both AEDs in a few months. Should you want to ask any further questions, feel free to e-mail me. Best wishes :) ~sol

Re: Temporal lobe tumor surgery questions

Submitted by forestams on Thu, 2007-03-22 - 17:41
Dear Alexis- I started having complex and simple partial seizures when I was 19- had them for about a year before I even saw a dr because I thought I was going nuts! When I eventually did go they found a 2cm benign brain tumor in my right temporal lobe. I had surgery to remove the tumor at that time- unfortunatly a little bit of the tumor was unable to be removed so I was always possibly going to need more surgery- I have gone back for an MRI once a year every year since that surgery and then had an appointment with my original neurosurgeon to check up on the tumor's status. The seizures continued as well- I've been on Keppra and Zonegran for years- I am now 25 and 3 weeks ago I bit the bullet and had a right temporal lobectomy to try to clean up the remaining tumor tissue and get rid of these damn seizures for good! So far so good but time will tell- I wouldn't have had a seizure by now anyways so it will be a few months before I will really know whether or not it was a success- but I feel perfectly normal and that's whats important to me! If ya know what I mean! For YOU- to PREVENT you from having more than one surgery like I myself had to do- shop around for surgeons- some will only want to get your tumor and some will want to try to address your seizures at the same time- what do you want to do? It might take a few more months for the tests but if they can narrow down where your seizures are coming from- probably somewhere right around where your tumor is if not the tumor itself it might behoove you to have them do it all at once then to wait around a few more years(like I did) and then have them cut you open again. Just my advice because doing it once sucks ass and then doing it again is just like wait- now I'm having my second brain surgery? Who does that? hehe (oops me!) feel free to ask anything you want- your situation sounds the most similar to mine than anyone on here except I've already been cut apart! ;P It's definitly not an easy decision for the RTL- I thought about having the temporal lobectomy for a year after the test results were in before I decided to have it done because I was so paranoid to have my brains cut out! But the tumor needs to be delt with- it's only adding to the problem at this point- there is more evidence though that these surgeries are more successful for people that have lesions which is super awesome for us! (because the lesions cause the seizures to begin with- ask your drs- that's where I heard it from) Good luck and let me know if you have any questions- Amanda

Re: Temporal lobe tumor surgery questions

Submitted by sparkations on Fri, 2008-03-14 - 09:48

Hey Amanda,

 I have a benign brain tumor that is suspected to be congenital and it is 2 cm as well, and located in the posterior temporal lobe. The neurosurgeon doesn't feel its necessary to operate on it, but I do have epilepsy and take tegretol in order to control my seizures. I've been considering surgery, but when I brought the subject up to my neurosurgeon, he said it wasn't necessary to do it at this point.

I was wondering whether your neurologist and neurosurgeon said the same thing? That you didn't need to have it operated and advised you against it due to chances of infections, etc? Well, I'm from Ontario so under OHIP, I get to have surgery for free, and maybe they advised me against it because of the fact that surgeries cost a lot and is a burden on the health care system.

I also have other health problems, such as social anxiety disorder, generalized anxiety, and urinary retention problems. I wonder whether its because of the tumor.

 

Lena

 

Hey Amanda,

 I have a benign brain tumor that is suspected to be congenital and it is 2 cm as well, and located in the posterior temporal lobe. The neurosurgeon doesn't feel its necessary to operate on it, but I do have epilepsy and take tegretol in order to control my seizures. I've been considering surgery, but when I brought the subject up to my neurosurgeon, he said it wasn't necessary to do it at this point.

I was wondering whether your neurologist and neurosurgeon said the same thing? That you didn't need to have it operated and advised you against it due to chances of infections, etc? Well, I'm from Ontario so under OHIP, I get to have surgery for free, and maybe they advised me against it because of the fact that surgeries cost a lot and is a burden on the health care system.

I also have other health problems, such as social anxiety disorder, generalized anxiety, and urinary retention problems. I wonder whether its because of the tumor.

 

Lena

 

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