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Mon, Sep 23 6:38pm · Has anyone been diagnosed with a pilocytic astrocytoma as an adult? in Brain Tumor

In 1992, I was diagnosed with an intraventricular pilocytic astrocytoma. The tumor was located inside my lateral ventricle. Basically, the center of my brain. A doctor at Mayo Clinic, Dr. Patrick Kelly, successfully removed the entire lesion. Dr. Kelly isn't at Mayo Clinic anymore. From what I've gathered, he's retired, too. Here I am, 27 years later, still going strong! I would get a second opinion. If you haven't already. Or maybe your daughter's neurologist can refer her to someone. That's how I met my doctor. Keep me posted.

Mon, Jun 17 6:34pm · Intracranial Meningioma/Hallucinations in Brain Tumor

Years ago, I was friends with another brain tumor survivor who experienced hallucinations after having an awake craniotomy. She either had a grade II or grade III, I don't remember. I can't even imagine being woken up during my brain surgery!! I had an intraventricular pilocytic astrocytoma. My surgery dates back to 1992. Overall, how are you? Is this a wait & watch? Please keep me updated. Thanks.

Nov 20, 2018 · Has anyone been diagnosed with a pilocytic astrocytoma as an adult? in Brain Tumor

@jkenser No, I never had any more children. But, I was pregnant before my diagnosis. Before I even knew I had a brain tumor. Looking back, I remember having a seizure during my first trimester. Hormones. I blame the seizure on changing hormones. I'm no doctor, but with the research I've done, I feel the seizures I started having, again, are due to hormones, chemical changes in the brain and/or stress.

I would definitely talk to your doctor/neurologist before getting pregnant. Especially, if you're on any anti-seizure medication. Taking these drugs can/could cause birth defects.

How long has it been? How old are you?

Nov 15, 2018 · Has anyone been diagnosed with a pilocytic astrocytoma as an adult? in Brain Tumor

They found my pilocytic astrocytoma was I was 29 years old. I'm 56 now. I had surgery at Mayo Clinic in Rochester. My doctor thinks I was born with it.

Nov 14, 2018 · It all started with a pilocytic astrocytoma... in Brain Tumor

Hi kmr3,

Glad to hear you're doing since switching medications.

When I had that seizure a few years ago, I was put on Keppra, too. It did not agree with me! Being irritable & tired to name just a few problems…. My doctor put me back on phenobarbital. (I was taking that drug before my surgery.) I'm on a low dose, but it seems to be working. So many of these seizure drugs can make you feel like a zombie. Like after I get home for work, I'm exhausted. If I don't keep moving, I'm worthless! What about you?

Sep 12, 2018 · Share Your Brain Tumor type & Years since Diagnosis in Brain Tumor

I was diagnosed with an intraventricular pilocytic astrocytoma in October 1992. I had surgery in November 1992 at the Mayo Clinic in Rochester, MN. This tumor was in the center of my brain. It was located inside my left lateral ventricle. I was SO fortunate that it was benign. I required no additional treatments. Unfortunately, I started having grand mal seizures, again, in 2014. Sadly, not one doctor I've seen can tell me why. I feel like I'm in uncharted territory.

Jan 31, 2018 · It all started with a pilocytic astrocytoma... in Brain Tumor

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.

Jan 14, 2018 · Anyone else diagnosed with acoustic neuroma, a benign brain tumor? in Brain Tumor

I was referred to Dr. Patrick J. Kelly at Mayo Clinic in November 1992. I had emergency stereotactic craniotomy to remove a tumor that was located in my left ventricle. The pathology results came back that is was an intraventricular pilocytic astrocytoma. A rare benign tumor. I, too, was very fortunate to be at Mayo Clinic. That was 25 years ago and I’m still going strong. I wish you the best of luck!