Meningioma: Anyone else? I'm frightened

I had a hearing test which led to an MRI. I was totally surprised to find I have 2 meningiomas. I was also diagnosed with having white spots scattered about in my brain. Both diagnoses are concerning My first appointment with a neurosurgeon has been scheduled for April 16th. I don’t know which issue is worse. I’m often a caregiver for people who have dementia (Alzheimer’s) so I’m quite aware of the disease process but I’m not familiar with brain tumors. I guess I’ll be learning a lot. I also worked for a hospice for 9 years as a case manager (not the nursing side of things) I’m ready to learn what I need to know to make the best decisions for myself. I’m going to make a list of questions to ask. Any suggestions?

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! ♥️

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! ♥️

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

@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?

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.

If Mayo Clinic in AZ, FL or MN is an option for you, here is how to request a second opinion: http://mayocl.in/1mtmR63

@ljm1, did you decide on getting a second opinion? Any update?

Thank you for asking. Even though it feels like a lifetime away, I have an appointment in April with a neurologist who specialize in the treatment of brain tumors. I am definitely interested in second and third opinions. Thank you for the info.