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

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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.

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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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Profile picture for rjnitke @rjnitke

Hello All,
During the summer of 2016, I noticed a blurry spot in my vision from my right eye. I only noticed it when I was driving, so I thought it was a smudge or scratch on my sunglasses. After a month or so, I noticed it inside while watching TV. I went to the eye doctor, thinking I would need glasses. After all the tests she had, she couldn't find an issue with my eyes. She ordered an MRI. She called me later the same day of my MRI to tell me I needed to go see a neurosurgeon. The neurosurgeon showed me my MRI and there is was...a tumor the size of a large avacado sitting on my optic nerve and pushing my frontal lobe backward. He explained that this was the reason for my personality changes (quick temper), loss of interest in things I used to enjoy, and of course, the vision. Within a month I was scheduled for my craniotomy. The day of the surgery, I could no longer see out of my right eye. The good news; after surgery, it was confirmed as a benign meningioma and my sight returned to normal. The bad news; my olfactory nerves were engulfed by the tumor and subsequently, removed along with it. I no longer have the ability to smell anything; candles, food, fire, noxious fumes, toxic chemicals, etc. Also, I have memory issues, mostly short-term, and I get headaches. Sometimes very bad and lasting for days. I served for over 23 years in the military and deployed to both Iraq and Afghanistan. I was exposed to burn pits during both deployments. Also, I worked with hazardous chemicals in the military. I retired in 2012, but the meningioma wasn't discovered until 2016. My neurosurgeon gave me a letter stating that in his medical opinion, this tumor started growing well within my military service, due to the slow-growing nature of meningiomas. However, my claim to have this included as a service-connected disability was denied by the VA. The VA requires more proof that this tumor had been growing while I was on active duty. I am having a VERY hard time finding a study, paper, article, or anything that I can site as evidence that this tumor was growing then. I recently found out that it is back, but so small right now that it isn't a concern. I am to continue getting annual MRIs to keep an eye on it. Has anyone come accross information on the growth rate of meningiomas? I am now without one of my original 5 senses and have no doubt it is connected to my military service.

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@rjnitke, I'm sorry to hear that the tumor is growing back. Is surgery being recommended again or another treatment approach?

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Profile picture for hayley28 @hayley28

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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@hayley28, thinking of you as you recover from surgery. I look forward to an update when you are able.

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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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In 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

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