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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vernicek | @vernicek | Sep 12 11:48am

In reply to @ktfri3dm3n89 "@vernicek Gamma Knife at UCSF" + (show)

@ktfri3dm3n89 Thank you. I’m glad you still enjoy golf, hiking, and biking. I’m hoping to continue my active life after fractionated radiation treatments.

Maryann | @mkoch | Sep 12 2:41pm

In reply to @ktfri3dm3n89 "@vernicek Gamma Knife at UCSF" + (show)

@ktfri3dm3n89 : Did you consult with a neurosurgeon at the radiation clinic or just the radiology team?

ktfri3dm3n89 | @ktfri3dm3n89 | Sep 12 6:14pm

I talked to my neurosurgeon to make sure I needed to have Gamma Knife. Seeing that I have 4 more after the excision of the one, he wanted to make sure the others didn’t grow. There’s a neurosurgery team at UCSF and everyone gets involved.

ktfri3dm3n89 | @ktfri3dm3n89 | Sep 22 11:12pm

In reply to @vernicek "Than your for sharing. Can you tell us where your meningiomas were and what kind of..." + (show)

@vernicek I had one behind my left ear that was removed. It was on the outside of the meninges. The other 4 I don’t remember where they all are. I know a small one is between my eyes. They have not grows so far. Phew!

rustyjones | @rustyjones | Sep 23 10:29am

They found I had a meningioma about 10 years ago mine is on my right eye nerve and it had grown such a small amount in the ten years I have known about it I have been having an mri every year to keep an eye on it they have always said they don't think it is cancer

ladytri | @ladytri | Sep 26 10:24pm

In reply to @terid "Hi, I just found out I have a timy Meningioma tumor from a MRI also and..." + (show)

@terid I was absolutely shocked - and scared - when I was told about my meningioma, so your reaction is normal. Take it one step at a time. See the neurologist. I created a binder with tabs for each doc I saw, and brought it with me to all appointments. As I thought of questions for each doc (primary care, neurologist, radiationoncologist, cardiologist, etc) , I wrote them down IMMEDIATELY. It helped calm my nerves (staying organized helped me feel in control) plus I could go back and review the answers (write those down as well) I believe docs appreciate it so nothing gets forgotten. My meningioma grew significantly over 2 years. Interesting that the first MRI never noted the meningioma.the second MRI saw it, went back to MRI #1 and showed the measurements. I had fallen and broken my wrist. the MRI was to rule out head injury and uncovered a growing meningioma. So.....stay calm, organize (I discovered i was emotional/scared and couldn't remember details the doc discussed. Hence the paper "diary". Keep us posted. We are all in different stages battling a common enemy. Hugs!