Recently diagnosed bilateral meningiomas

Talk to your neurologist unless it is impacting you in a negative way they will probably watch unless it’s cancer. But make a list of questions for follow-up. What did they tell you after your MRI? How long ago was your MRI? Do you have any symptoms or issues that could be related?

My neurologist said they will repeat MRI on 2 months. I recently had it done on May 22. I really don’t have any symptoms but my father had an acoustic neuroma and I’m wondering if there could be Neurofibromatosis Type 2 in family.

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.

We treat people not just imaging studies. Find a good neurosurgeon and disc with them. If asymptomatic I think risk may be greater that watching. I must say that post craniotomy I had minimal pain. Since leaving hospital the only pain med has been an occasional Tylenol.

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

I am always happy to recommend Dr. Philip Theodosopoulos at UCSF.