Share Your Brain Tumor type & Years since Diagnosis
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
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I am 19 years post pituitary adenoma ping pong ball sized. I have diabetes insipidis, hypothyroidism, adrenal, insufficiency, and live on replacement hormones. I have pituitary adenoma apathy. I have a hard time showing any feelings. This is not depression. I have had cataract surgery twice on each eye. My immune system is compromised. I was very lucky that my vision came back sharp and clear because one eye was almost blind because the tumor was pressing on the optic nerve. Whenever I get sick, I have to double my steroid intake for several days. I try very hard to stay well. I had a superior surgeon, Dr. Charles Rosen. Pituitary gland was removed with the tumor. That is the cause of all the other things. The apathy is the one thing that I cannot control and I’m wondering if anyone else is having problems with this.
I've just been diagnosed with my third tumor recurrence, and it's been heartbreaking. It is a Grade 2 ependymoma, but the doctors suspect that a DNA change has occurred, and the grade could have changed. I'm a few days away from my craniotomy which might have to be followed by six weeks of IMRT. Praying for all of us tumor warriors. It isn't easy
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1 Reaction@rjnitke, I'm sorry to hear that the tumor is growing back. Is surgery being recommended again or another treatment approach?
@hayley28, thinking of you as you recover from surgery. I look forward to an update when you are able.
I had Medulloblastoma in 2009-2010. I had most removed with surgery, and the rest with Chemo and radiation. I had speech, physical, and occupational therapy to learn to talk, walk, swallow, and just live life again. Four months stay for me, I attached a picture of what helped me along the way
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2 ReactionsIn 1998 I had craniotomy for what they thought may be a meningioma, but it was a very rare hemangiopericytoma. To date, I have had 3 craniotomies, 2 radiosurgeries and 6 weeks of radiation to treat 5 of the same types of tumors in same area. It is now called a solitary fibrous tumor. I currently have 2 more tumors in the temporal lobe which they have been watching for 2 years as surgery could cause more harm than benefit. 10 months ago I was hospitalized twice for TBIs sustained after blackouts. I was subsequently diagnosed with epilepsy. Since last TBI I have been unable to taste or smell. See ENT on Tuesday. Anyone had similar experience? Thank you