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Meningioma - I'm scared to watch and wait

Posted by eleanor1931seminara1931 @eleanor1931seminara1931, Apr 24, 2016

Have had a mri that revealed a large structure that is presumed to be a meninggioma associated with the right sphenoid wing.creating mass effect upon the right frontal lobe and mass effect and elevation of the right lateral ventricle by this process. Neurosurgeons have recommended that no effort be expendeded to remeadiate or remove it, nor do they recommend future mri's to observe it's very slow growth. What should I do? To do nothing, as they recommend, scares me. Having a tumor is frightening. Is there a role for future immumology? Help, please. Eleanor Seminara, 85 yrs old.

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mkoch | @mkoch | Feb 15 2:56pm
In reply to @mj3428950 "Hi @colleenyoung , first of all thank you for responding my message. I found out I..." + (show)
@mj3428950

Hi @colleenyoung , first of all thank you for responding my message. I found out I have meningioma when I had Bells Palsy, my doctor had asked to for an MRI scan. I was in shock and don’t know how to react after knowing. The location of my meningioma is found at the petroclival area. I have seek different neurosurgeon opinions and finally I have decided to apply the watch and wait approach as my neurosurgeon advise me to do so. After six months he asked me to go back to him to go for another MRI , this is to check if there is any signs of growth. After knowing all of this, I’m trying to act normal like nothing is happening to me, but it’s hard to focused. Sometimes I don’t know if I’m overreacting to what I’m feeling. My hearing becomes so sensitive, energy level is low, I got easily tired for little things that I do. I feel dizzy at times. I’m scared…

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MJ: Try not to be scared. I was told by my neuro doc that the typical growth rate is about 1mm a year for a meningioma. Also, I was scanned for a stroke (which I didn't have) back in Jan. 2022 and therefore I was sent home from the ER. About a month after that I went back to the hospital and asked for the record of my visit there. I read through the report and found I had a meningioma, something I had never heard of. I took the report to my primary care doctor and he said, "Not to worry. They are slow growing and 95% of the time benign." This doctor didn't connect the dot that the meningioma was related to my on-going sinus issues. A year and a half later I connected that dot myself and scheduled an appt. with a neurologist. My point is, basically I did a "watch and wait" for a year and a half and the meningioma had hardly grown during that time.

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mmm | @mmm | Feb 16 10:14am

Just chiming in to add to what mkoch shared. I have two meningiomas which were diagnosed in 2006. I had GK treatment on both. A recent MRI revealed negligible growth compared to the MRIs over the years, though balance has begun to deteriorate this year.

I don’t know whether to attribute the slow growth to the GK treatment, the size or location of the meningiomas (or maybe prayer!), however, GK is something to explore with your neurology team.

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