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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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sjg67 | @sjg67 | Sep 20 12:52pm
In reply to @mkoch "sig67: I had a craniotomy at UCSF eleven months ago to remove a meningioma. I am..." + (show)
@mkoch

sig67: I had a craniotomy at UCSF eleven months ago to remove a meningioma. I am now under the watch-and-wait protocol for 2 other meningiomas. Six months ago the neurologist offered I may have to have them radiated. I have a follow up MRI in October. In some ways I'm more afraid of the radiation than the surgery. After having the craniotomy, how traumatic (for lack of a better word) was the gamma knife treatment?

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Hello. I just had my follow up MRI and the tumors treated with Gamma Knife are indeed shrinking. It is a virtually painless procedure and very easy compared to craniotomy. Keep in mind that Gamma Knife has been around for a very long time and UCSF performs a lot of them. I wouldn't be afraid - you will be in good hands. Good luck to you!

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cscmaryann | @cscmaryann | Sep 20 2:05pm

You might want to consider proton therapy treatment. Several places in the US and world offer it. I had it for my second meningioma after a crainiotomy for first meningioma resulted in removal of infected hardware. Proton therapy does not remove the meningioma, but kills the cells to keep it from growing.

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reginamyers1958 | @reginamyers1958 | Sep 23 7:52pm

I was diagnosed with a brain tumor in late March 2022. On April Fool’s Day, my neurosurgeon removed a very large, thankfully benign, meningioma. The size of a tennis ball. I had no headaches or any symptoms whatsoever that would indicate a problem. I felt depressed and didn’t care whether I experienced joy or not. Thankfully, it was discovered after taking a fall in the shower. Doctor said he couldn’t believe I hadn’t had a stroke. Between God and my neurosurgeon, I’m living my best life (so far). I’m very interested in keeping up with this support group.

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1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Sep 27 10:05am
In reply to @geekwoman "I was diagnosed 7 days ago with a low grade glioma in my temporal lobe. Prior..." + (show)
@geekwoman

I was diagnosed 7 days ago with a low grade glioma in my temporal lobe. Prior to that, it was presumed to be an acoustic neuroma.
At present I meet with a neurosurgeon tomorrow to discuss treatment. In the meantime, I have dizzy spells, petit Mal seizures, loss of appetite, tinnitus, headaches/migraines and a severe lack of energy. I lose words and can't complete sentences.
I'm a 54 year old woman living alone.

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@geekwoman, this is all so new and I'm sure scary. How did the meeting with neurosurgeon go? Do you have a treatment plan? How are you doing?

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Moderator
Colleen Young, Connect Director | @colleenyoung | Oct 1 2:53pm
In reply to @reginamyers1958 "I was diagnosed with a brain tumor in late March 2022. On April Fool’s Day, my..." + (show)
@reginamyers1958

I was diagnosed with a brain tumor in late March 2022. On April Fool’s Day, my neurosurgeon removed a very large, thankfully benign, meningioma. The size of a tennis ball. I had no headaches or any symptoms whatsoever that would indicate a problem. I felt depressed and didn’t care whether I experienced joy or not. Thankfully, it was discovered after taking a fall in the shower. Doctor said he couldn’t believe I hadn’t had a stroke. Between God and my neurosurgeon, I’m living my best life (so far). I’m very interested in keeping up with this support group.

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@reginamyers1958, experiencing apathy and depression out of the blue must've been confusing at the time, if that was out of character for you. Do you recall if the apathy came on gradually or suddenly?

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1 reply
reginamyers1958 | @reginamyers1958 | Oct 1 3:11pm
In reply to @colleenyoung "@reginamyers1958, experiencing apathy and depression out of the blue must've been confusing at the time, if..." + (show)
@colleenyoung

@reginamyers1958, experiencing apathy and depression out of the blue must've been confusing at the time, if that was out of character for you. Do you recall if the apathy came on gradually or suddenly?

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It came on gradually. I was diagnosed with a tiny meningioma when I was 45. Neurosurgeon said “nothing to worry about” and made no mention of followup MRI’s. I divorced when I was 55, so naturally I thought I was depressed. The apathy emotion was a gradual thing for sure. Big meningioma discovered at age 64. Very thankful for a top notch neurosurgeon from OSF in Peoria.

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