Meningioma: Anyone else? I'm frightened

ageiswinning: Sorry, I just saw your question after 2 days. The MRI did not indicate it was near the optic nerve. I was told that after consulting with the neurosurgeon to discuss the fact that I had an almost 3 centimeter meningioma. I had vision issues which my optometrist called "ghosting." It was like the letters were stacked on top of each other. I also had sinus issues. And, for a few years prior to being diagnosed, I would point out to my husband that one of my eyes drooped, was not symmetrical with the other. Of course, after being told the location of my main meningioma (meaning the largest of the 3) the eye drooping made sense. I hope you are able to get into seeing a neuro doctor soon to find out more information.

thanks for replying. I have visual disturbances. Presented with double vision. Also tinnitis, headaches and some balance issues. Sorry about the neuralgia, that must be difficult to deal with. I have a sugical consult in 2 weeks. Hopefully I wont have to watch and wait. Why are you doing that? What is the surgeon waiting for?

I found out I had one over a year ago after a ct scan in ER- I rolled my ankle leaving my mom’s house and slammed my forehead on sidewalk…. They said to follow-up with neurosurgeon. He had me do a MRI three months after er visit. It measured tumor, very small and slow growing and do another one in a year which I’m due for one now. I actually forget I have one…

I have googled and searched webs and everywhere I could to find as much research as possible. Continue to ask your doctor all the questions you have about your situation. The results of your MRI is the will show you exactly where it’s located.

My symptoms can be managed with meds for now so we are waiting to see what my tumor's rate of growth is before surgery, since I have a good quality of life. Surgery may change a few things, especially related to my right-side hearing. I think that double vision and balance are much harder to live with. Good luck with your appointment!

I was just diagnosed on the 9th of Jan . Waiting in hospital until all aspirin is out of my system! Surgery Wednesday am!? Scared to death! went in because my arm was numb and came out with the tumor. It’s supposedly on the outside of my brain, but it’s causing problems. Hope it all goes well with you. I’ll be thinking about you.

Saw neuro and I am pending for an MRI with contrast- Although I have terrible blurred vision with intermittent true double vision - he said the tumor shouldn't be the cause. I am glad to be told I don't need surgery, but it seems really odd to me that I am so symptomatic without a cause- sure am bummed to feel like the vision issues don't have a source or solution 🙁

For years I've also been having issues with double vision and right eye droop. Seen diff specialist to try and figure this out as they reassured me my issues were not from my meningioma. Suddenly after my annual scan (yearly after gamma knife) they saw a second located in the cavernous sinus area and it was there all the time when they go back to my imaging. At a loss and now trying to see what the next steps are for this. In such shock as to how this could be missed from at least 5 yrs of images.

roz0606: This happened to me as well. I had a CT sinus scan in 2017; The report came back "no sinus infection."
But I kept have what I perceived as sinus issues as well as my left eyelid seeming to droop more than my right.
Slight "ghosting" of letters when I did close up reading. Saw an E.N.T. and eye doctor at least 3 or 4 times during a five year period always complaining of the same symptoms. Finally, a neurologist looked back at the 2017 CT sinus scan and found a 2.7 centimeter meningioma that was never cited by the radiologist. So, after reading your post, I guess it happens and hopefully is not that commonplace. The meningioma was removed in 2023 and it was in my sinus cavity and I was experiencing some of the same symptoms that you cited. A second opinon is always good.

Julie: By "outside" of your brain I am assuming the tumor is in your meninges, which are the linings outside, covering, your brain. Then I think it would be a meningioma. If so, I had such a benign tumor removed ("resected" is the vernacular used by my neurosurgeon) and the craniotomy was not the nightmare I imagined. At any rate, try not to be too "scared to death." I am assuming your surgery is tomorrow, Wednesday. Best wishes on a speedy recovery. Feel free to send me a personal message if you need to vent.