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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

Re: Re: Temporal lobe tumor surgery questions

Submitted by alexis00 on Fri, 2007-03-23 - 14:43
To ALL: First of all, thank you SO MUCH for writing in here!!!! The more I talk to doctors, the more confused I get - and this helps so much. Since I first wrote here, I have seen 2 neurologists, and epilleptologist, and 3 neurosurgeons (two of them supposedly the best in NYC).. This is where my questions/complaints start. The first neurosurgeon told me I do not have a harmless arachnoid cyst in my left temporal lobe (as was first diagnosed when I was in high school) - that it's a benign tumor (3.5 x 4cm) and that anyone can plainly see that. He said it's most likely causing my seizures, and may get worse. And, that I need to have it removed, although there is no rush. The second neurosurgeon told me that it's an epidermoid and is probably causing the seizures (although not definitely), and is very slow growing. He said I will probably need to remove it at some point in my life, or I can wait and take my chances and see if it grows, and stay on the medication meanwhile. The third neurosurgeon (at the top hospital in New york for neurosurgery, from what I was told) told me that it IS an arachnoid cyst and harmless. When I told him I was having seizures - he said that was strange but that it shouldn't get worse. He said surgery was unnecessary, anyone could see that (they seem to love saying that) and that if the medication works - why take the risk of surgery... He spent two hours talking me out of surgery. The epilleptologist told me he doesn't know about surgery, but he can prescribe me more pills. Yeay! The neurologists say nothing is certain, but the final decision is up to me. What are you supposed to do??? The more specialists I see, the more opinions I get.. And Keppra is great in that I have not had any seizures since January, but I am SO TIRED all the time. The fatigue varies but I can no longer do the same things I used to, and the gym is very, very difficult. I used to go 4-5 times a week for 45 minutes of cardio, now I can barely do 15 minutes walking on a treadmill. I'm hoping you get used to that.. Still, no seizures. Needless to say, this is all I think about. My personal life has gone to shit and since my seizure at a client's office in madison square garden, there are rumors going around the office about what's wrong with me, since I always answer "I'm fine, thanks!" Fabulous. I'm sure some of you can relate...

Re: Temporal lobe tumor surgery questions

Submitted by Jorge Luis Hernandez on Tue, 2011-02-22 - 20:03
Good day Alexis: I'm a retire US Vet due to the similar medical condition as yours. I had a similar tumor, located at my Left Temporal Lobe. I have been using Dilantin 300mg every day since 2000 and it was working fine, until recently that I start to have the deja Vu sensations again. Even when the yearly MRI at the VA hospital shows no change or growth, it does worry me that after all this years Seizure/Deja Vu free, I start to have the deja vu's again. Excuse me for asking, What was your outcome?, Did you have surgery?, all the info and help you can give it will greatly appreciated. Hope you are better Jorge Luis Hernandez Jorgehrndz70@gmail.com

Re: Re: Re: Temporal lobe tumor surgery questions

Submitted by forestams on Fri, 2007-03-23 - 18:48
Hey there- sounds like these freakin surgeons should talk to eachother before they even talk to you! Are they at the same hospital or several? And this is the FIRST time I've EVER heard a surgeon just make up what's in your head without them doing lab tests to prove it! Wierdos- if it's a cyst why wouldn't they at least want to drain it if it's that big? It has to be causing some pressure on your head if ya know what I mean- stupid Drs have no freakin common sense sometimes! Surgery is scary but that sounds like a lot of mass of some sort in there and god only knows what it is- the Drs can only speculate. I'm honestly surprised they wouldn't want to do a biopsy if they are in such disagreement just to make sure that it isn't something that should come out- because even if it's a grade I benign tumor- do you really want it in there slowly growing even bigger forever? And if it's a cyst why the heck can't they pop the freakin thing! Jerks! Ahhhh Keppra- Keppra was great when I was in college and could sleep in every other day.... but when I started working full time I had to cut it down and start taking more of my second med to compensate- I was falling asleep at work! Try lots and lots of diet pepsi- it won't kill ya if you can get over the taste ;) I think I'm pepsi's best customer ever I drink so much diet pepsi to stay awake because of the medicine! You'll get more used the Keppra over time but you'll know if you've missed a dose- you'll feel more awake ;P As far as work goes- I know what you mean- but just remember- everyone has some wierd thing about them- so screw em! They wouldn't be able to handle it! The only person that knows my situation at work is 65 because I figure at that age- she's seen everything else! And now I'm done babbling- Please though- ask these damn surgeons of yours to talk to eachother and have a conference- My drs had several surgical conferences about my situation and I'm sure they can do the same for you- I can't believe the douchebags didn't offer as it is well THEIR JOB!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! HAVE A GOOD WEEKEND- take a walk- (if it's not raining up there it is here in Philly)- see a movie- get your mind off of this crap for a day- it might not disappear but it will make you feel a hell of a lot better to forget about it for a moment or two. Later dude- Amanda

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