Meningioma: Anyone else? I'm frightened

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

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.

@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?

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.

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.

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!

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

I just had MRIs done and they found on at my T4. Both my parents had lung cancer, with tumors in that same spot. Everyone I speak to say it's benign, but everything I'm seeing about atypical meningioma is it is neither benign nor malignant, but it is an aggressive tumor. I understand your concerns and fears because this hurry up and wait and see approach is not in my wheelhouse. Both my parents had stage 4 lung cancer at detection, both had a tumor on the T4 vertebrae, both were in agony. I'm in so much pain every day it is a struggle not to take the self checkout, but I remember my son, my reason to keep going and fighting another day. I have Chiari Malformation and have had 2 craniotomies within the last 3.5 years. My life has gone from active and taking care of everyone else to now not even being able to do simple tasks by myself, my son is now the parent to me. My memory is crap, the pain is constant, my inability to be active and independent is all wearing on me. Please remain strong, remain positive (even though so difficult), and keep us updated. I'm glad to have found a forum that is legit to speak up in.

I just keep my eyes closed the entire time and it doesn’t bother me. I am given earphones and listen to smooth jazz which relaxes me.

None. He said surgery now or wait until you get serious side effects of double vision or pituitary hormone issues like diabetes because it was already pressing on and displacing my optic nerve and pituitary gland. I told him I don’t have any side affects, and he said you will. It’s a matter of when.