Questions on follow-up for benign meningioma

Posted by fiddlemama @fiddlemama, Feb 3, 2017

Benign meningioma up against brain stem - 2011 - treated with Proton Beam - yearly MRI's since have shown no increase in size. How long should I continue to get MRI's (with contrast) , special lab tests, and avoidance of soy/estrogen/etc.???

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Colleen Young, Connect Director | @colleenyoung | Feb 3, 2017

Welcome to Connect, @fiddlemama.
Great questions about follow-up. I'd like to bring others into this conversation to see what their experience has been with follow-up post treatment of a behign memingioma. I'm tagging @dianerock @07ram @pegorr @carma @barbarabx @lindalb @55soon @user_che69bc66 @kimf @eleanor1931seminara1931 @lindajean and @debb2010.

You may also be interested in reading and joining in these discussions:
- multiple meningioma brain tumors http://mayocl.in/2j4Pxln
- I've survived three brain tumors!!! One done with Cyberknife http://mayocl.in/2j4WEtX
- Meningioma: I'm scared to watch and wait http://mayocl.in/2d9egF3

Fiddlemama, Are you concerned with having yearly MRIs?

fiddlemama | @fiddlemama | Feb 3, 2017

No - I just didn't want to add to health care $$'s if it isn't called for. My radiation oncologist is out of touch for me. Thanks

snowgirl | @snowgirl | Apr 19, 2017

In reply to @colleenyoung "Welcome to Connect, @fiddlemama. Great questions about follow-up. I'd like to bring others into this conversation..." + (show)

I had a lemon-sized meningioma removed in Feb. 2015, and it was close to the brain stem. The rehab was hard and I wondered if my life would ever be "normal" again. Thankfully it really is "normal" again. I've had two follow-up MRIs and each has been perfect. However, because I'm clostrophobic, I have to be anesthesized for the 90-minute procedure. This last time in January I had a very bad experience after the procedure. I didn't go back to the doctor. Instead I toughed it out. From what I was reading I think I was not thermally monitored while under anesthesia. Setting that bad experience aside, I told my neurosurgeon about that at my follow up appointment with him. Because the previous 2 MRIs were absolutely clear, he said next year I would only need a CAT scan. THAT I can handle without anesthesia !! I had the surgery done in Lansing MI at Sparrow Hospital.

kimf | @kimf | Apr 19, 2017

Hi Snowgirl,
Just wanted to say how happy I am that you are feeling normal again. My husband is at that point now following surgery last July and radiation in November. There is still some therapy to be done but we are just amazed at his progress. Wishing you all the best!