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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

how do I get into doctors

Submitted by Aleonzipper on Sun, 2018-03-25 - 00:27
how do I get into doctors quicker I read these post and everyone is in weeks I’m 4 1/2 weeks out and I’m just getting an eeg what the heck is going on 

Re: Temporal lobe tumor surgery questions

Submitted by umichfan02 on Tue, 2012-08-21 - 23:25
I just saw your post about your son and it couldn't have come at a more perfect time! My son just had this same exact surgery just one week ago and while I have a great neurosurgeon, I am having a hard time getting any concrete answers to what his basic recovery should be like. He answers everything in general terms, ie: he will feel better in time, he will have headaches for awhile, etc. My son actually had to endure 2 surgeries in 2 days as the Dr. didn't find all of the tumor the first time around. While I expect he should have headaches, I'm wondering about his confusion that he has been having. He seems to keep asking the same questions about things, and just a general short term memory issue. Also, his left eye is somewhat "droopy" and he says it hurts. Also, vision is blurry/fuzzy in that eye. From what the Dr. said about this, it is "normal" and "temporary"...I guess it would just be nice to know from someone who has been there, what their experience is with this. Thank you in advance for any advice you can offer! --Shannon

Help

Submitted by patti35633@gmail.com on Tue, 2018-01-02 - 16:08
Dany, are you still on here? It is now 2018 and I've just found your post. My 33 year old son was diagnosed with a tumor in temporal lobe and hippocampus. He's suffering terribly with headaches and seizures- refuses to consider surgery for fear of the collateral damage. I'd like to know how you are doing and perhaps it would encourage him. Thank you, Patti

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