Share Your Brain Tumor type & Years since Diagnosis

That is the same plan as my husband is on currently and he was diagnosed April 2018. John does not have headaches though. What milligrams are you taking for the week, daily dose?

I was diagnosed with a hemangiopericytoma in June 2017. I had surgery in July 2017 and they removed as much of the tumor as they could. In November/December I received 6 weeks of proton beam radiation. My first follow up MRI was in April 2018 and there was no new growth. My next MRI will be in October.

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.

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.

I'm so happy for you!

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.

Good for you honey!

I just found out 2 days ago I have a brain tumor called Ninengioma in the right frontal lobe and possibly MS! It’s 9mm, or .345, or 3/8 inches! It’s tiny! I hope they can take it out through my nose! I’m getting ready to visit a new Neurologist clinic and I will know more! I’m so sad and scared! Thanks! This is my first post!✝️✝️✝️✝️✝️

Wishing peace and love as you go through the process. Let your family and friends support you on this journey.

I was diagnosed December 13th 2022 with the tumor, went through a craniotomy on Feb 2nd 2023 then waiting for biopsy results which came back as a Oligodendroglioma. Total resection, things are going well, first MRI came back good and will be repeated every 3 months. I did not have to go through Chemo or radiation and feel very blessed for that.