Meningioma: Anyone else? I'm frightened

Rachael: I had a 3 centimeter meningioma removed 1/16th of an inch from my left optic nerve. So I did quite a bit of research on my own prior to surgery. If your neurologist is telling you it is too dangerous to remove please trust in that. I am sorry you have to go through this.

Im 49 years old and I found out last September that I have an inoperable menagona wrapped completely around the left optical nerve. I began having symptoms of not being able to move My eye amoung many scary episodes caused seizers, passed out woke In hospital. But this diagnosis was not what I thought was happening. I've gotten a second opinion. If they attempt to remove it's encased or something around a vein it's so complicated and scary. I had radiation treatment in December in attempts to shrink the mass. My symptoms are getting worse and It frightens me because my thought process or the way I feel or even having to reach down to touch my left leg to make sure it is still there. I've ignored these symptoms as I began having the leg sensations weird like I couldn't tell where my left leg was. I was 29 when those symptoms began. So yes it was very large when it wad found. I got the call within hours from the carti cancer mri and neurologist. Although it is not cancer I also still have an oncologist doctor and a nurosurgeon and have so far had had one treatment of radiation and will have to continue for the rest of my life to keep it small or I pray it does. But I want it removed but I'm told it would be detrimental from possible death, paralysis blah blah blah kind of want to give up because it gets worse or the symptoms feel like they do. And my youngest child is 14 years old.

I have and if I were younger I would probably try that first. I'm 64 and if radiation doesn't shrink it or even if it does, it could still grow back and I agree with my surgeon that I don't want to be much older and have to go through the craniotomy. They are going to leave 5% of the tumor so that they have a barrier "flap" to help keep spinal fluid out of my sinus cavity. The leakage would put me at risk for meningitis which is a threat for me. Not having a spleen makes it hard for your body to fight off certain infections, meningitis being one of them. I keep up on my meningitis vaccines for that reason.
So I might have to have radiation a year post op just to keep that 5% from growing.

I have a brain tumor and had Gama Ray done and my tumor has not grown.

have you explored radiation to shrink the tumor?

My neurosurgeon wants to do a craniotomy but it's not a full craniotomy. The incision is from behind my ear to top of my head just behind the hairline. My meningioma is on my left olfactory groove ( but too late to do the procedure that goes through the nose, I have done that research). I'm starting to get used to the idea, this group is very helpful. Thank you for sharing.

Thank you for sharing your experience. It helps when I hear that this could be not as scary as I am thinking. I had back surgery in 2022 and hip replacement in 2023 so I'm no stranger to surgery (also have had my spleen removed) but for some reason cutting into my skull just makes me cringe 😬

Wishing you all the best

There is a multi compartmental meningioma centered in the right middle cranial fossa that extends into the right cavernous sinus and sella with gentle mass effect on the pituitary gland. This encases the cavernous right internal carotid artery with mild vascular narrowing. There may be some contact of the prechiasmatic right optic nerve at the superior orbital fissure.

Thank you