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.

Interested in more discussions like this? Go to the Brain Tumor Support Group.

elisabeth007 | @elisabeth007 | Jul 8 5:45pm

In reply to @rsr40 "Thank you" + (show)

Wishing you all the best

citychica | @citychica | Jul 8 10:24am

In reply to @jasonl1012 "So is it by the pituitary gland? And pressing up on the optic nerve? That’s where..." + (show)

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.

rsr40 | @rsr40 | Jul 8 7:59am

In reply to @elisabeth007 "There are two ways to arrange a Mayo brain tumor zoom session: 1. you go on..." + (show)

Thank you

citychica | @citychica | Jul 7 9:29pm

Here is exactly what the radiologist observed.

elisabeth007 | @elisabeth007 | Jul 7 1:46pm

There are two ways to arrange a Mayo brain tumor zoom session:

1. you go on to mayo clinic website and search a”brain tumor” and can see the choice of drs (focus on ones that make zoom appts) and there appears to be scheduling link

2. You call central scheduling and request brain tumor zoom consult:

408-301-8484 hours scheduling is open, 8 am —5 pm M-F

Then you ask for assistance in having your images transferred there before your appointment. My MRI was done at a major academic center so it was in “powershare” system. I also sent a release of info consent to the facility that did my last MRI, i also reached out to my neuro-opthamologist office and then sent an official referral (was not required) and also help coordinate the timely transfer of images from where they were taken to mayo clinic.

Wishing you all the best

rsr40 | @rsr40 | Jul 7 1:32pm

In reply to @elisabeth007 "If u wish, you can have a mayo brain tumor zoom appt. i did" + (show)

How do you arrange a Mayo zoom appointment?

elisabeth007 | @elisabeth007 | Jul 6 2:26pm

In reply to @citychica "I’m frustrated, surgeon doesn’t believe the tumor is causing the vision problems in my left eye..." + (show)

If u wish, you can have a mayo brain tumor zoom appt. i did

elisabeth007 | @elisabeth007 | Jul 6 2:24pm

In reply to @citychica "I’m frustrated, surgeon doesn’t believe the tumor is causing the vision problems in my left eye..." + (show)

My neuro-opthamologist at Bascom Palmer in Miami is the one who detected my meningioma. He has ordered every diagnostic test imaginable to determine the cause of my fluctuating vision loss. I also see a cornea specialist

jasonl1012 | @jasonl1012 | Jul 6 9:37am

In reply to @citychica "I’m frustrated, surgeon doesn’t believe the tumor is causing the vision problems in my left eye..." + (show)

So is it by the pituitary gland? And pressing up on the optic nerve? That’s where mine is and I’ve had two opinions so far and going to Mayo in 10 days. I can let you know what they say, but so far all have said remove it. At 3 cm I’m surprised they wouldn’t. Definitely get another opinion at Mayo. It’s your health and you deserve it

citychica | @citychica | Jul 6 8:54am

I’m frustrated, surgeon doesn’t believe the tumor is causing the vision problems in my left eye as the tumor is on the right and wants to do a wait and see if it grows in 3 months. Wants me to continue to see my eye doctors. I am seeing an eye doctor at UCLA in 11 days.

Also if they were to remove the tumor, because where it is near too many nerves, They wouldnt be able to remove all of it. Otherwise, they would treat with radiation which wouldn’t shrink it but stop growth.

I’m seeing another surgeon Monday so we will see what they say. I was told the meningioma is 3.6 cm long and 2.4 cm wide at its widest. Curious if I should go to Mayo.