Meningioma: Anyone else? I'm frightened

Thank you. It is frustrating and sad especially since I (we) go through so many other unnecessary appts and other diagnostics (they were testing me for myasthenia gravis) ptosis surgery which was not successful since there's an underlying cause (CS meningioma) and going on since 2019. Im thankful as I remind myself it could be worse. I pray you also get the treatment necessary and wish you so much as I do with all off us going through this, all the best and for positive outcomes. Hugs

That breaks my heart for you. It makes me sad that doctors seem to rely on imaging when the patient is sitting right in front of them telling them something is wrong. I asked the neurosurgeon where to turn or what to do and wasn't given any direction. I'm sad that there are symptoms with no solution. I sure pray you get the right treatment and that everything is successful.

Hi @mkoch, what was the size of your meningioma when it was removed in 2023? How much did it grow from 2017, 2.7 cm? Regards.

It’s such a comfort to know someone has already gone through this and knows the outcome . It’s hard not to be afraid . It’s a 6hour surgery . Thank you for responding to my message. I’m sure you’ll hear from me again thank you.

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.

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.

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.

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 🙁

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.

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!