Watching a Meningioma Brain Tumor

Did you go to Mayo on your own or were you referred? I’m considering going on my own.

No biopsy and none was recommended. That’s kind of why I’m still uncomfortable of the diagnosis and the wait and watch. I’ve also been diagnosed with myoclonus that the neurosurgeon says has no connection. And also a nodule on adrenal gland, which I’m having tests run on as we speak. Seems awfully coincidental that all this crops up at once. That’s why I’m considering going to Mayo.

I had a right frontal lobe meningioma in 2001. Because of the size of mine (5cm, about the size of a small orange) I was also told that it had probably been there for at least 20 years. I found out about mine by having a grand mal seizure out of the blue. Because it caused a seizure and because there was no way to know if it was benign without surgery, I had mine surgically removed. Fortunately it was benign. I had two small recurrences in 2017 and had gamma knife radiation on them at Mayo in Rochester. How did your doctor know it was benign? Did you have a surgical biopsy?

Thank you. And you. It’s an awful road. Just got back from Mayo. Dr. was excellent, kind, just wonderful. No change in two years. Been there a very long time. Just hoping it stays put.

Bless you.

Benign left frontal convexity/parasagittal here. Wait and watch. It’s unnerving. Calcified, also.

I’m reading through these comments since I’ve been diagnosed with a benign right frontal lobe meningioma. They say that from two different CTs that the tumor has been there some 20 years judging by the calcification formed around parts of it. I can’t have an MRI due to my pacemaker, so that eliminates closer examination. My neurosurgeon recommends the wait and see mainly because the tumor has been there so long. It was found accidentally while searching for a reason for severe jerking of my body all of a sudden, then continued episodes of one part of my body or another. This, along with a “full” feeling in my head and mild headaches. Finally diagnosed with myoclonus, but still no source of where it’s coming from. Hence, the brain CT and discovery of the tumor. The wait and see has me pretty jittery because it doesn’t make sense that there’s something taking up space in my skull that shouldn’t be there and why shouldn’t it be removed. Just sign me “waiting “

To discuss it he said before he would strongly consider surgery to remove it, i had nodules in my medistinal that i had surgery to remove planned so he wanted me to get through that and healed up first! So i believe he wants to remove it! I hope so i want to feel good again!

@tonj657716, I can imagine that you feel miserable. When you go for your consult on Sept 18, let your doctor know that you're scared and that you've been suffering from depression, anxiety and panic attacks. Your team can help you get the support you need to see this through. You're not alone. Perhaps @mrector @kmart and @pegorr can share some of their experiences with you.

While we wait for others to join the conversation, You might like to read this conversation.
- Life: How do you not let a brain tumor take over your life? https://connect.mayoclinic.org/discussion/life/

Is your upcoming appointment a consult for surgery?

Hello Colleen
My grand daughter is almost 4 the light of my life
As for treatment not directly but have had three laser surgeries in each eye due to early onset of glaucoma caused by the inflammation and pressure of the tumour when it was present
Additionally a few follow up appointments with Neuro psychology for memory issues and spatial issues also as a result of the tumour when it was present but otherwise no other treatment. I go every two years for a MRI follow up and so far all’s clear
Very thankful and grateful and will forever be grateful for the call I made to Mayo Clinic and the advice I was given