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Meningioma: Anyone else? I'm frightened

Posted by pixie49247 @pixie49247, May 12, 2023

I just found out I have a Meningioma tumor from a MRI I had for something else. Doctor said they are almost always benign and am going to get an appointment with a neurologist. Anyone else have one of these. I’m getting very frightened now.

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azbailz | @azbailz | Jul 14 5:09am

I have had a meningioma now for 6 years. Or have known about it now for that long. Unfortunately it has not begun to grow abcs I’m getting ready for a craniotomy. Mine is a left sphenoid wing meningioma. And apparently all are different. My optic nerve and carotid are very close. So I too am a little nervous.

If I don’t get the surgery there is a chance that I’ll lose my vision. There will also be some disfigurement, as that is what happens with optic nerve involvement.

So, I’m preparing. It will likely be one month from now. I’ll be out off with for a while. I do have a good surgeon. I’m 71, and I’m in pretty good shape for my age. So. I’ve got that going for me. But I’m a bit nervous. I will keep you posted. And I’ll keep you in my prayers.

aZ

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2 replies
dlc1953 | @dlc1953 | Jul 13 8:36am
In reply to @rachael03 "Im 49 years old and I found out last September that I have an inoperable menagona..." + (show)
@rachael03

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.

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Rachel. I’m sorry to hear about your problems. Just a couple of questions. Is your surgeon associated with a really good hospital? Teaching hospital? Did you get a second opinion? I think these are major questions. I had a 6mm Meningioma removed this past March, my surgeon is at University of Pa. Did the Gamma Knife on me (I believe UofP is where this procedure started). I don’t know where you live, but, I would seek out the best if you can. (Maybe you already have). You need to be your own advocate. Good luck.

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jasonl1012 | @jasonl1012 | Jul 12 6:13pm
In reply to @rachael03 "Im 49 years old and I found out last September that I have an inoperable menagona..." + (show)
@rachael03

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.

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I’m sorry you’re going through this. It’s awful to be told you have a brain tumor. I’m sure even worse to have all these accompanying side effects. It never hurts to get several opinions. Where do you live? Are you willing to travel?

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mkoch | @mkoch | Jul 12 12:43pm
In reply to @rachael03 "Im 49 years old and I found out last September that I have an inoperable menagona..." + (show)
@rachael03

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.

Jump to this post

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.

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rachael03 | @rachael03 | Jul 11 9:22pm

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.

REPLY
3 replies
tonimt | @tonimt | Jul 10 4:27pm
In reply to @elisabeth007 "have you explored radiation to shrink the tumor?" + (show)
@elisabeth007

have you explored radiation to shrink the tumor?

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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.

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cheryljar | @cheryljar | Jul 10 8:54am

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

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elisabeth007 | @elisabeth007 | Jul 10 8:23am
In reply to @tonimt "Thank you for sharing your experience. It helps when I hear that this could be not..." + (show)
@tonimt

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 😬

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have you explored radiation to shrink the tumor?

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1 reply
tonimt | @tonimt | Jul 9 9:04am

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.

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tonimt | @tonimt | Jul 9 8:58am
In reply to @jimmye "I had Meningioma surgery in February. The surgeon said he got it out. I had rehab..." + (show)
@jimmye

I had Meningioma surgery in February. The surgeon said he got it out. I had rehab for ten days also. Things went very well. It takes time to fully recover. You won’t even know if you have surgery.

Jump to this post

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 😬

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