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Benign tumor removed from temporal lobe 2 weeks ago - if anyone has questions

I had a benign tumor removed from my temporal lobe less than two weeks ago, in case anyone is going through anything similar, and I'm sure there are many that are. I finally met with a great neurosurgeon at NYU who operated on me, Dr. Paul Huang. The tumor did prove to be a large epidermoid, not an arachnoid cyst as many have told me previously, and was removed successfully. I feel great! My history is that I was misdiagnosed with "panic attacks" for the past ten years until I started having grand mal seizures a few months ago. I didn't even know what a partial seizure was until this January, although I've apparently had them since I was at least 16. (I am now 26.) I would freeze up, loose feeling in the right side of my body, see and hear things and be unable to speak. I also had an "arachnoid cyst" found in my brain a few years ago but was told that it was harmless and that it couldn't cause my panic attacks. An EEG this January showed that the seizures were coming from the tumor, though. I saw 3 neurosurgeons, only one said I should have surgery. I was warned that I might make things much worse by having surgery; that the risks involve death, paralysis, more seizures, loss of memory, comprehension, etc. I still had it, on May 15. I was in ICU for one week: had a really bad grand mal seizure the night after, and a few partial seizures since. I am now on 1,000 Keppra twice daily, more than I was before surgery. However, it's really not as bad as everyone made it sound. The worst thing is the fatigue- you definitely need time off work. The scar going across my head is healing quick and they didn't have to shave my whole head. In any case: if anyone has any questions: please feel free to ask! The advice I got here originally was very helpful, couldn't do without it. I know how alienating and confusing this whole thing is. Always get a second opinion and don't let anyone scare you. It is better to at least feel like you've tried to do something about your health.


Re: Benign tumor removed from temporal lobe 2 weeks ago..


My name is Kelli and I'm 28 years old (living in AK).  Last August 2008 I was diagnosed with an Epidermoid Brain Tumor in my right CPA and is protruding up into my Temporal Lobe which bean cuasing partial Seizures in the beginnin of August.  I found a wonderful support group on which I highly recommend that you be a part of, if you aren't already.  This group has been a huge blessing to my life.  I have learned so much from the people of this group from their personal stories to support and advice.  I have a surgery date set for April 2009 with a very well known and experienced surgeon in North Carolina.  I am praying that this surgery will cure my seizures.

 Feel free to contact me if you get this message.  I'd love to talk with you more about this. 

Best Regards, Kelli

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