Meningioma: Anyone else? I'm frightened

I have a 12mm frontal lobe meningioma with edema which was found by orthopedics via mri head for clavicle and shoulder neck pain which is causing headaches blurred vision nausea this has been going on for 17 months with constant headache since Nov 2024 affects of vision and nausea and struggling with day to day and work I've got my neurology appointment this week a bit nervous as I have lots of allergies and there's very minimal pain relief I can take but I'm hoping they will operate I've read quite a few messages on here and feel for everyone

In 2001 I consulted a neurologist in Houston about daily headaches I had been having for about 6 months. He insisted on an immediate MRI. It showed that I had a massive left frontal lobe meningioma pressing down on my brain. My neurologist observed that if I hadn't gotten diagnosed then, I would have lost the ability to speak within 2 or 3 more weeks. The meningioma, when removed, was the size of a clenched adult male fist. The operation to remove it took 8 hours. Though I was told there was a 25% likelihood of some recurrence, that was 24 years ago, and I have never had another problem with anything remotely connected to that surgery. Quick, almost painless recovery (compared to surgery on a major limb or the thoracic cavity). Since you posted nearly two years ago, I assume you went on and had the necessary surgery. As far as my experience goes, if you did that, you probably won't have any future recurrences to worry about!

Had first appointment with neurologist. He doesn’t think the headaches are an effect of the tumor. It’s located left anterior intracerebral falx measuring 11x6mm. I asked about surgery, he said the hemispheres will have to be pulled away in order to reach it because it’s in a sensitive area near sinuses and drains. So we will be doing another MRI in June to assess growth or change. At that time we will see the neurosurgeon and hopefully go forward to radiation treatment. Even though I’ve been told it’s small in size, I just don’t want to wake a sleeping giant.

Thank you for a direct connection to request my next opinion. I thought I would be on a long waiting list. The scheduling was so smooth and soon. It is scheduled for April 17 in Rochester. I'll definitely keep you all updated.

@brandynecole, I can imagine the anxiety and fear that seeing your parents with lung cancer adds to your recent diagnosis. Not 2 cancers are the same, and like you said, meningioma is neither benign nor malignant.

Clearly, you are someone who wants to take action. Rather than "watch and wait", I prefer to call this treatment option "active surveillance". It is, in my opinion, more accurate. You and your team aren't just sitting around waiting for the other shoe to drop, but rather actively monitoring, ready to action when necessary, but not before or unnecessarily. Does that make sense? Helpful?

That makes absolute sense. I've always had a proactive approach to my health being a single parent, this time is no different. I have tremendous pain with all of this, so I am really being proactive to try to minimize the pain (don't like taking pain meds now in case I need them later). The waiting around is what is killing me. Thank you so much for your insight.

@sbok, how did your appointment go? What are the next steps?

I was diagnosed last April while being tested for a stroke. (Positive on the stroke). I felt devasted...had a stroke AND a tumor! In a year ...I have learned that 1) it's probably been there a long time 2) it's no one else's emergency 3) it's benign and most likely won't grow, but they will test you regularly to be sure. My first two visits to the neurosurgeon were every 3 months, now it's a 12 month check. I've calmed way down about it now (almost a year later), have learned a lot. I no
longer feel like I'm going to die and have even developed a bit of a sense of humor, saying to my grown kids and dear friends, "Hey! Don't mess with me...I have a brain tumor!!!" Hang in there, you're tougher than you know and you can cry when you feel like it. Then go out and take a walk! ♥️