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Has anyone been diagnosed with Meningioma with edema?

Posted by as72 @as72, Dec 4 5:21pm

Had MRI two days ago and found 1.8 cm meningioma Met with internist today, said this is what they call a “mass affect” which is causing the brain to shift off center. If it was just a small 1.8 cm they would do a wait and see approach, but due to the swelling they will probably want to do surgery. Scheduled two appointments with neurosurgeons, one next week and week after at Cedar Sinai for two opinions. Still getting headaches. Because there are neurological symptoms my guess is they will want to do surgery. Frightening!

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jimw9 | @jimw9 | Dec 10 10:27am
In reply to @as72 "@randallshields56 Thank you for the prayers. Turns out they never scheduled the appointment for me tomorrow...." + (show)
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@randallshields56
Thank you for the prayers. Turns out they never scheduled the appointment for me tomorrow. Getting me in next Wednesday. Such a frightening diagnosis. After all I’ve read, once I meet the neurosurgeon and get their input, I think I’d like to do the watch and wait or the cyber knife. Not sure I’ve read, it’s only a matter of time before it grows and I will be 75 by then. I’m healthy now, but who ever knows, that could change on a dime. The steroids really helped after 5 days.

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@as72 That is good news. You are in the 70% group that have positive results from the steroids.

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dailygift | @dailygift | 3 days ago

Greetings all, I had my 3 month follow up for my meningioma (1.8 cm with mild swelling, left occipital lobe midline). It was an incidental finding, no symptoms. I was happy to hear it is stable with no change. Both neurosurgeons at my preferred med center agree that I can wait and repeat the scan in 6 months. I am so glad I got this second and third opinion. My first consult at a different med center was adamant that I needed to have gamma knife surgery and specifically stated I am not a candidate for watchful waiting. The extra time also gave me the opportunity to do my own research. Best wishes to all.

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as72 | @as72 | 3 days ago
In reply to @dailygift "Greetings all, I had my 3 month follow up for my meningioma (1.8 cm with mild..." + (show)
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Greetings all, I had my 3 month follow up for my meningioma (1.8 cm with mild swelling, left occipital lobe midline). It was an incidental finding, no symptoms. I was happy to hear it is stable with no change. Both neurosurgeons at my preferred med center agree that I can wait and repeat the scan in 6 months. I am so glad I got this second and third opinion. My first consult at a different med center was adamant that I needed to have gamma knife surgery and specifically stated I am not a candidate for watchful waiting. The extra time also gave me the opportunity to do my own research. Best wishes to all.

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@dailygift
That’s awesome news!
So happy for you!!! I too, have incidental finding of 1.8cm meningioma, mild headaches and mild assoc/edema. I just saw neurosurgeon at Stanford yesterday who said I’m not a candidate for keyhole, EES, or cyberknife. There’s a 50/50 chance that it changes. I asked what she would do if she were me. She said she would wait 4 months and do another MRI to see if it changes. The first neurosurgeon I saw said I was not a candidate for watchful waiting. My third consult this Monday cancelled. After reviewing my file said he doesn’t treat these and would be better off getting a third consult from UCSF. My internist who referred me is now saying if I like Dr at Stanford to stick with her as too many cooks in the kitchen is bad.
If I wait and watch and it changes I’m looking at craniotomy which comes with risks. I prefer to wait but anxious about getting more neurological symptoms. Tough choices to make and looking at serial MRI’s.

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dailygift | @dailygift | 2 days ago
In reply to @as72 "@dailygift That’s awesome news! So happy for you!!! I too, have incidental finding of 1.8cm meningioma,..." + (show)
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@dailygift
That’s awesome news!
So happy for you!!! I too, have incidental finding of 1.8cm meningioma, mild headaches and mild assoc/edema. I just saw neurosurgeon at Stanford yesterday who said I’m not a candidate for keyhole, EES, or cyberknife. There’s a 50/50 chance that it changes. I asked what she would do if she were me. She said she would wait 4 months and do another MRI to see if it changes. The first neurosurgeon I saw said I was not a candidate for watchful waiting. My third consult this Monday cancelled. After reviewing my file said he doesn’t treat these and would be better off getting a third consult from UCSF. My internist who referred me is now saying if I like Dr at Stanford to stick with her as too many cooks in the kitchen is bad.
If I wait and watch and it changes I’m looking at craniotomy which comes with risks. I prefer to wait but anxious about getting more neurological symptoms. Tough choices to make and looking at serial MRI’s.

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@as72 ultimately what helped me relax about this was the result of my followup MRI. Seeing no change helped me AND the doctors realize I could wait. Any procedure has risks and we and they have to weigh risk vs. benefit. So they think about what can happen if you wait. Lesion can get bigger. With evidence of no change in an interval of time they were more comfortable saying ok to wait. I understand not everyone has this option to wait. We all have different tumors, locations, symptoms, etc. This has been my experience. I will be thinking of you and hoping your headaches resolve and you get no new symptoms! Keep in touch and take good care of yourself.

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