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helendee (@helendee)

It all started with a pilocytic astrocytoma...

Brain Tumor | Last Active: Nov 17, 2018 | Replies (12)

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@lynda1992

Hello. Twenty five years ago, I also had a piloyctic astrocytoma removed. I was 29 years old at the time. Mine was located in a lateral ventricle. Grade 1. Benign. A doctor at Mayo Clinic was able to remove the entire lesion, so I didn’t require any additional treatment(s). Was taken off all seizure medication in 1994. Out of the blue, I had a grand mal seizure, at work, three years ago. What? Why? I don’t get it! I’ve had two more sense. I was afraid my tumor had come back. After seeing some local neurologists, I ended up going back to Mayo Clinic. After 3 days of tests, the only answer I was given was head trauma, brain surgeries and scar tissue. I’m still in search of a better answer. So far, I’ve been unsuccessful. Mean while, I’m stuck taking seizure medication, again.

I understand what you are going through. Just hearing the word “brain tumor” is scary enough. Let alone when it’s you or someone you love. Doctors don’t know enough about them, so they’re not able to give you the answers you’re looking for. We, the patient or caregiver, need to keep fighting. Your son and I are both in unchartered territory. How many patients are still alive 25 years after having a brain tumor removed? Stay strong. Keep up the research. Be there for your son.

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Replies to "Hello. Twenty five years ago, I also had a piloyctic astrocytoma removed. I was 29 years..."

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.

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