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Nov 17, 2018 · It all started with a pilocytic astrocytoma... in Brain Tumor

Early afternoon is my time for exhaustion. Even caffeine doesn’t help! But moving around does seem to help.

Nov 13, 2018 · It all started with a pilocytic astrocytoma... in Brain Tumor

Hi Lynda,

I had the same type of tumor removed three years ago, and it is looking like I may be on anti-seizure medication indefinitely. Not that this is the situation with everyone, but I made the transition from Keppra to lamotrigine, and I am liking that a lot better. Keppra made me more irritable and tired.

Nov 13, 2018 · Has anyone been diagnosed with a pilocytic astrocytoma as an adult? in Brain Tumor

Weird, I found this thread because I was searching for “pain above eyebrow”. Huh. But, yes I did have a pilocytic astrocytoma, found at age 37! I had one seizure and went to the E.R. The CT scan did not see anything, but they recommended that I make an appointment for an MRI. The MRI found a “spot” or a “lesion,” as it was referred to, in my left temporal lobe. The neurosurgeon I spoke to didn’t seem too knowledgeable or experienced with brain tumors, so I decided to go to Mayo, and I am so glad I did. My Mayo brain tumor experts did not know what type of tumor I had. It was estimated to be low- or mid-grade. I asked about biopsy, but the surgeon said that in my case a biopsy would be just as invasive as a surgery to attempt to remove the tumor. Luckily my tumor was relatively small, so it was up to me whether or not I wanted surgery. I decided to go for it: I had good health insurance, and I wanted to fight the thing before it had time to get any worse. The tumor was 100% removed, and it turned out to be pylocytic astrocytoma. So, no radiation or chemo needed. I can’t believe how lucky I was. Now my only issues are that I have to stay on anti-seizure medication, I have some muscle atrophy in my right temple (cosmetic issue), and I get some headaches in my left temporal area. Oh, I found out that I am not eligible to donate bone marrow, but I am still eligible to donate blood.