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?