Diagnosed with Meningioma

Hi. I'm not an expert but I have one. I know how frightening and disruptive it is to hear the diagnosis. I found Brain Tumor Network 1 844-286-6110. They are comprehensive for no cost professional (RN) phone and hand on support for the entire journey. They also provide you with options for top medical care, such as Mayo Clinic or true experts in your area. So glad you reached out. Someone from Mayo here will respond shortly. I'm stepping up so you have a connection to grab onto.

I was diagnosed with meningioma in May 2022. I took the CT scan to rule out a stroke because the right side of my face was paralysed.( Just a reversal here. I had bells palsy in 2019.)
CT result was a meningioma I did the MRI same result.
To cut to the chase. I had the same location of the meningioma
I am scared to this surgery. Have the same symptoms l am 52 years old

Diagnosed with meningioma and really need someone to talk to

Hello,
I’m sorry to hear that you’re going through this stress! I also had a tumor growing onto my optic nerve. I had a host of health issues going on, as the tumor was a pituitary adenoma, destroying function of the pituitary gland and then impairing my optic nerve. It was only when I had lost all vision in my right eye, that an mri was done and the tumor was discovered. By then it was huge. I had surgery to remove the tumor and afterwards immediately regained some vision back in my eye. The vision is blurry, but still much better than right-eye vision loss. I have also found that my left (good) eye, compensates for the visual deficiencies of the right. I also had gamma knife done a year later, as the tumor was large (macro-adenoma) and any residual tumor is likely to grow. I continue to see a neuro-ophthalmologist yearly and he monitors for any changes, but my eyes have remained stable. As an avid reader, I continue to enjoy reading. Put your trust in your surgeon. This area is their specialty. The body works to heal itself. Give yourself time to recover and try to focus on enjoying life. Good luck!

By the way, it's not uncommon that the surgeon does not remove an entire tumor when it's located close to critical structures. That approach is taken when it would create more damage to disturb the tumor at the critical structure than leaving the partial tumor. Since meningiomas grow very slowly most of the time, the outcome for an older person with some residual tumor is very good, per medical statistics, bc we often just outlive the tumor's presence and slow growth. But the specifics of your individual case should be covered to you by your surgeon. When I received my diagnosis, I chose to have a 2nd opinion from another experienced Neurosurgeon. They are often free of charge if it's just a review of your MRI. And no one takes offence by that.

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

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.

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, 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

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!