1. < Brain & Nervous System

Meningioma

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.

Interested in more discussions like this? Go to the Brain & Nervous System Support Group.

meepmufasa | @meepmufasa | Jan 29 12:03am
In reply to @terid "Hi, sorry to hear about your vision. My doctors keep telling me that my meningioma is..." + (show)
@terid

Hi, sorry to hear about your vision. My doctors keep telling me that my meningioma is tiny and is taking the wait and see approach. I'm a little nervous about knowing it's there and it could cause problems. I know my vision has changed and have to wear stronger glasses all the time. I guess I'll just wait and keep an eye on it. I also have a pituitary adenoma that I am watching. Glad to hear it is not growing!

Jump to this post

I had no symptoms until a severe tonic/clonic seizure lasting 6 minutes sent me to ER. It was my first seizure ever and they discovered the meningioma. Four days later , craniotomy. Successful removal of benign mass. Imbalance, some cognitive/verbal difficulties (seen as mild by family, driving me nuts), neuropathy and encephalomalacia are all topics I’ll be discussing with neurologist this February 2024.

REPLY
1 reply
meepmufasa | @meepmufasa | Jan 29 12:04am
In reply to @meepmufasa "I had no symptoms until a severe tonic/clonic seizure lasting 6 minutes sent me to ER...." + (show)
@meepmufasa

I had no symptoms until a severe tonic/clonic seizure lasting 6 minutes sent me to ER. It was my first seizure ever and they discovered the meningioma. Four days later , craniotomy. Successful removal of benign mass. Imbalance, some cognitive/verbal difficulties (seen as mild by family, driving me nuts), neuropathy and encephalomalacia are all topics I’ll be discussing with neurologist this February 2024.

Jump to this post

Correction: February 2024

REPLY
purpleturtle | @purpleturtle | Jan 29 10:10am

I understand how frightening it was to receive this diagnosis.
I was diagnosed with my menginoma in 2005 after an mri for my Menierer's diagnosis.
I was told it was almost always benign and to just have it checked every year which I did for a while. Then I got lazy and stopped following up. My family doctor insisted I follow up in 2018 with a mri. My tumor was there but I was diagnosed with amyloid angioplasty a very rare untreatable
uncurable issue. I went to the Mayo Clinic in Rochester for a 2nd opinion. They said the only way to diagnose it 100% would be with a brain biopsy after death. They also told me my menginoma was growing and recommended having a radiation treatment to try to slow or stop the growth. Unfortunately it didn't work and I had 2 major strokes in 2019. After the 2nd stroke I had to have emergency surgery to remove my tumor which was a grade 1. I have had frequent mris since then to follow the tumor. Thankfully it is stable.
The surgery affected my left side balance but I am functioning.
I wish you the best.

REPLY
2 replies
jessica79 | @jessica79 | Jan 29 10:19am

I was diagnosed in the early 1990’s with a small meningioma. The decision was to watch and wait. I haven’t noticed any problems with it. It was discovered when I had a CT scan for a sinus problem. As you can see, I’ve had it a long time. Of course, see a neurologist if you’re having symptoms. Prayer helps, too.

REPLY
mkoch | @mkoch | Jan 31 7:47pm
In reply to @purpleturtle "I understand how frightening it was to receive this diagnosis. I was diagnosed with my menginoma..." + (show)
@purpleturtle

I understand how frightening it was to receive this diagnosis.
I was diagnosed with my menginoma in 2005 after an mri for my Menierer's diagnosis.
I was told it was almost always benign and to just have it checked every year which I did for a while. Then I got lazy and stopped following up. My family doctor insisted I follow up in 2018 with a mri. My tumor was there but I was diagnosed with amyloid angioplasty a very rare untreatable
uncurable issue. I went to the Mayo Clinic in Rochester for a 2nd opinion. They said the only way to diagnose it 100% would be with a brain biopsy after death. They also told me my menginoma was growing and recommended having a radiation treatment to try to slow or stop the growth. Unfortunately it didn't work and I had 2 major strokes in 2019. After the 2nd stroke I had to have emergency surgery to remove my tumor which was a grade 1. I have had frequent mris since then to follow the tumor. Thankfully it is stable.
The surgery affected my left side balance but I am functioning.
I wish you the best.

Jump to this post

Did having the strokes have anything to do with the presence of the meningioma, or was that a totally, separate issue.

REPLY
purpleturtle | @purpleturtle | Jan 31 7:50pm

Yes unfortunately they did.

REPLY
mkoch | @mkoch | Feb 14 3:33pm
In reply to @purpleturtle "I understand how frightening it was to receive this diagnosis. I was diagnosed with my menginoma..." + (show)
@purpleturtle

I understand how frightening it was to receive this diagnosis.
I was diagnosed with my menginoma in 2005 after an mri for my Menierer's diagnosis.
I was told it was almost always benign and to just have it checked every year which I did for a while. Then I got lazy and stopped following up. My family doctor insisted I follow up in 2018 with a mri. My tumor was there but I was diagnosed with amyloid angioplasty a very rare untreatable
uncurable issue. I went to the Mayo Clinic in Rochester for a 2nd opinion. They said the only way to diagnose it 100% would be with a brain biopsy after death. They also told me my menginoma was growing and recommended having a radiation treatment to try to slow or stop the growth. Unfortunately it didn't work and I had 2 major strokes in 2019. After the 2nd stroke I had to have emergency surgery to remove my tumor which was a grade 1. I have had frequent mris since then to follow the tumor. Thankfully it is stable.
The surgery affected my left side balance but I am functioning.
I wish you the best.

Jump to this post

"Purple Turtle" were the strokes because of the meningioma being there?

REPLY
View MoreView Less
Please sign in or register to post a reply.