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Recently diagnosed bilateral meningiomas

Brain Tumor | Last Active: Nov 5 8:54pm | Replies (6)

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@mkoch

Be very proactive with your follow up visits and ask a lot of questions. I had a meningioma that was discovered incidentally. My primary care doctor and my oncologist ( I am a b/c survivor) both said, "No worries. We often find them in older people we screen for other issues." No other follow up was suggested, not even watch-and-wait. On my own, a year later, I told my primary care doctor I wanted an appointment/referral to a neurologist as a follow up. The neurologist told me the same thing as the other 2 doctors, basically, "no worries." Six months later I went back to the neurologist and said I wanted to know the location of the meningioma and what structures it was close to. He said he would go and call the radiologist that did the MRI scan, over a year ago, and ask while I waited in the exam room. He returned to the room and said it was near my trigeminal nerve. The neurologist referred me to a radiation oncologist who uses cyber knife to radiate benign and cancerous tumors as he said it was doubtful any neurosurgeon would want to remove the meningioma given its location in my brain. Dr. Wong, the radiation oncologist, was excellent. He showed me the MRI scan and where the meningioma was located. It was was 2.7 centimeters and located 1/16th of an inch from my optic nerve. Dr. Wong said most likely no neurosurgeon would feel comfortable removing the meningioma so close to my optic nerve and even he was nervous doing radiation so close to that structure. My daughter insisted my husband and I go to UCSF for a consultation, a 2 hour drive. The end of the story is a neurosurgeon there did remove that meningioma 1/16th of an inch from my optic nerve and did not damage the nerve. I had a craniotomy. And, I will add, the brain surgery was not as bad as I had imagined it would be. But, of course, that may be influenced by where one has their surgery.

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Replies to "Be very proactive with your follow up visits and ask a lot of questions. I had..."

Very happy for your wonderful outcome! Do you mind if I ask who your surgeon was at UCSF?