I am sorry to hear about the continued seizures/aura. I hope that it gets better as time goes on and your brain heals. I have a neuro appointment in two weeks, so I will see what she says when I tell her I am leaning away from surgery.

Hello! How are things going? The latest tests make me think surgery might not be needed right now (fingers crossed). Hope all is well with you.

Thank you so much for all of the info. It was great talking to you. I hope to do more research soon, right now I am swamped with doc appts and work. I had a great visit with two neuos at NYU. They really explained a lot to me. I am starting to accept another (3rd-yikes!) surgery. I feel like they actually listened to me and what I wanted/needed. To make a long story short, my hippocampus is damaged from the tumor, seizures and surgery. The last surgery required them to cut some white matter that disconnected it to the rest of my brain causing some atrophy. This is thought to slowly get worse over time and cause more seizures. There are still more testing to be done, so I will see. Thanks again!

I emailed one researcher a while back, but didnt get much info. I was told I have a "complex" DNET, as it does not look like a typical DNET, but no one can tell me what that means for the course of the tumor. I would love to read that article about DNETs changing grades. My seizures were complex partials before the first surgery, now they are simple partials. Well except when I was on Lamictal where I had 4 complex partials in 3 days- ouch. It is so hard to explain what these seizures are like. I have a few kinds: some are just are extreme de javu, or things look different (bigger, smaller, not in the right place). I have had a few olfactory ones- sour baby formula smell. Did they remove all of your hippocampus? What hospital did your surgery? I will privately message you with my phone number.

I have a long story, I will try to shorten it, lol. When I was 15 years old I started getting headaches and dizzy spells. The MRI showed a "lesion," but was not thought to cause any of my symptoms. I started meds for the headaches and vestibular rehab for the dizziness. Things were getting better. I had annual MRIs, but never thought anything of it. Fast forward 11 years and I had 3 seizures in 2 days. My neuro (same one since I was a kid) had me go into the ER to get checked out. The MRI showed that my once thought of "cyst" was enhancing with the dye. They assumed it was a low grade glioma turned high grade. I had surgery 3 days later (Nov 2008), just a resection because they were assuming I would need chemo. The first pathology was an oligodendroglioma grade 2/3. I went to Memorial Sloan Kettering who said it was a DNET and that the remainder needed to come out. I sent my slides to John Hopkins who agreed it was a DNET. I had a second surgery June 2009. Now my seizures continue, less severe but more often. They are discussing a temporal lobectomny including my hippocampus to help my seizures. I am looking into more info before I decide. Sorry for the long story. I love when you said about temporal lobes being optional, I feel the same way. Was your surgery the right side? How long were you having seizures before your diagnosis? We are going to have to compare what our doctors say about DNETs because I have read all the info I could find on them and there is hardly anything. I am so glad we found each other!!

I am 28 years old and also a DNET survivor. I cant believe that I am not the only one!