Share Your Brain Tumor type & Years since Diagnosis

Posted by jstow07 @jstow07, Aug 8, 2018

Hey everyone I was diagnosed almost 7 years ago with a medulloblastoma in my right cerebellum. Completely removed followed by proton radiation. No reoccurrence since. Just curious what everyone else has and how many years and treatment

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.

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Hello, I had a grand mal seizure at 4am on my birthday 4/11/2016 and was lucky I had friends with me in my room on vacation. I woke up in hospital in Chicago and my family had already had flown in and were there when I came through. Knew it couldn’t be good! Eleven days later taken home to MN to The Mayo in Rochester by ambulance and they quickly figured out it was a tumor that caused the seizure and two days later I had the craniotomy. A couple weeks after I got the call. Lateral Right temporal lobe AA3. Had standard radiation and chemo ( temadar). MRI every 3 months now and so far so good. I experience some fatigue and tinnitus but I can handle that! Next MRI on 10/2. Thank god for the staff, nurses and doctors at the Mayo! I also love this community and try my best to help and give back what I can.

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@yags182

Hello, I had a grand mal seizure at 4am on my birthday 4/11/2016 and was lucky I had friends with me in my room on vacation. I woke up in hospital in Chicago and my family had already had flown in and were there when I came through. Knew it couldn’t be good! Eleven days later taken home to MN to The Mayo in Rochester by ambulance and they quickly figured out it was a tumor that caused the seizure and two days later I had the craniotomy. A couple weeks after I got the call. Lateral Right temporal lobe AA3. Had standard radiation and chemo ( temadar). MRI every 3 months now and so far so good. I experience some fatigue and tinnitus but I can handle that! Next MRI on 10/2. Thank god for the staff, nurses and doctors at the Mayo! I also love this community and try my best to help and give back what I can.

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I'm so happy for you!

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Our daughter was dx with Craniopharyngioma tumor. Partial resection via craniotomy on Jan 29, 2015. Began Proton Beam Therapy radiation on June 22, 2015. Three yrs and no tumor progression. Pheripheral vision loss is now stable following Hyperbaric Oxygen therapy at Mayo. Remains closely followed and treated for loss of pituitary, hypothalamus, and thyroid plus secondary adrenal insufficiency and migraines.

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