Diagnosed with Meningioma

Hello @carol1965,

I see that you are concerned about a meningioma. Are you concerned for yourself (or a family member or friend)? What type of symptoms are you (or they), having with this disorder?

Here is some general information from Mayo Clinic's website regarding symptoms, diagnosis, and treatment of meningioma. After reading this information will you post again?
https://www.mayoclinic.org/diseases-conditions/meningioma/diagnosis-treatment/drc-20355648

Glad to have read so much good news and positive outcomes in dealing with meningioma, as I have done. Folks, you might find some helpful info and more inspiration from “meningioma mommas” (meningiomamommas.com). This organization is dedicated to raising awareness about meningiomas and raising funds to contribute to meningioma research. I hope you find it useful, as I have.

I had a sinus cat scan that showed i have a meningioma on my left frontal lobe. I will need an mri to confirm. I had no idea. After reading all the info provided by the Mayo website now I'm worried. I lost my sense of smell several years ago and have ringing in my ears which are both symptoms but can also be explained away as aging as the first ENT I visited did. Anyone out there with one of these hard to spell tumors and if so, please share your story.

Hello @pam1954 and welcome to Mayo Clinic Connect. Hearing a diagnosis of any kind can be jarring and sometimes the information can be overwhelming. It is good you've come to Connect for some support by others with similar experiences to help you wade through this journey!

You will notice that I have moved your post into a discussion called "Diagnosed with Meningioma" that you may find here: https://connect.mayoclinic.org/discussion/diagnosed-with-meningioma/

I'd like to bring in members @fiddlinchuck and @jmb73 to see if they can share their early diagnosis experience with you as you wait for your MRI.

When is your MRI appointment and what you are most worried about?

I had this surgery 3 years ago. There wasn't much pain for me.
I had serious complications due to unrelated medical issues so my recovery took longer. That aside the brain surgery wasn't as bad as I thought it would be. Best wishes to you.

Hello @pam1954, about 4 years ago, I learned through an MRI that I had a very large meningioma that would require surgery to remove. Other treatment options were not considered to be viable. Like you, I did not have many overt symptoms beforehand, but I did have 3 syncope events, for which I decided to visit my PC. His hunch was that the events were probably caused by a heart condition, so I go quite a cardio workup. As almost an after thought, an MRI was prescribed. The MRI was interrupted by the technician who stopped it and called the Emergency Dept., which requested that I be ushered over there immediately. I did not understand what was happening until I met with the ER docto, who showed me the available MRI imagery, told me that it showed what he called a tumor, and indicated that I needed to meet with a neurosurgeon, who showed up minutes later. The neurosurgeon explained that the growth was a very large meningioma that was likely non cancerous, that had been growing for many years, and was likely the cause of my syncope events. The imagery clearly showed that it surrounded my optical nerve and also encased my cerebral artery. Probably like you, I had never heard of a meningioma and wondered what it meant for me. I was told that I would need surgery to remove the growth but that it could not be done at our small town surgery center and was referred to a larger medical center that could handle the job. I was also prescribed Keppra, 750 mg, twice a day to ward off possible seizures. My surgery got scheduled for about 2 months later. I wanted the surgery date to arrive soon so that I could get this over with but, on the other hand, I was dreading the arrival of the date. The surgery team was very careful and left in place what was said to be about 10% of the meningioma because of its close association with my optical nerve and artery. As noted by someone else, the craniotomy was not as bad as I thought it would be and I had very little pain afterwards, requiring only Tylenol on one occasion to dull the sensation. My opthamologist exams after surgery were normal. I have had annual followup MRIs to monitor the residual meningioma and, thank goodness, it has not grown larger during that past 4 years.

I know from experience how jarring a sudden and unexpected diagnosis of a meningioma can be, but for both of us, it is very fortuitous that it has been recognized. I would not know if there are treatment options other than surgery available to help protect your optical nerve, but I would suggest asking about the best approach for protecting your vision. I extend my best wishes to you as you go forward and wish you the best possible outcome of your treatment. Good luck!

Hi, Carol, I am so sorry for your diagnosis. I too have a meningioma making
my right side of face partially numb (eyes flushing a bit) but I am holding
off on surgery for now until MRI shows any enlargement.
I will pray for you, as I realize you can't continue these awful symptoms
without surgery. Blessings, Judy

I was recently diagnosed with meningioma it is not cancerous but it
is located between the optic nerve and I took an MRI a few weeks ago
and the last time I spoke to my surgeon he told me he could not remove the whole tumor because it was too close to the optic nerve and blood vessels. I have to be transported to Portland for the surgery
I have an appointment with the surgeon on Sept 8 to go over the new MRI and find out when I will get this done I am very scared and nervous I am 71 years old female and always had good health but my eyes are starting to go blurry when I take off my glasses. any advice?

Hi. I know how your world seems to suddenly disrupted, filled with stress and uncertainty when suddenly told you have a brain tumor. No one really expects that. And considering having surgery is certainly daunting. I could not have surgery but faced the possibility until that conclusion was determined. But I understand your feelings. The three things that helped me cope were: my faith, trust in my Drs, and relaxation supplements w benadryl. But invaluable practical help came a Nurse Navigator from the American Brain Tumor Network, which is a free service. Praying for you.

Have any of the drs suggested Gamma radiation surgery? It doesn't remove the tumor but it stops it from growing. I had it done in 2018 when I was 74 and have had no problems.
Good luck.
Joan