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Anyone had radiation for recurrent meningioma?
Hi all,
I had a craniotomy 12 years ago at Mayo Jax for meningioma (sphenoid wing pressing left optic nerve). Post-op ocular stroke resulting in left eye blindness. Meningioma is back in same spot, surgery would do more harm than good, too risky. Considering radiation. Afraid of potential radiation damage to my one and only seeing eye and optic nerve (right eye, right optic nerve). Could anyone share radiation experience for recurrent meningioma? Please and thank you so much!
Debra
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Debra: 12 years ago when you had the craniotomy did the neurosurgeon tell you they were able to remove all of it? I am asking because I had a craniotomy 2 1/2 years ago (sphenoid wing, 1/16th of an inch from my left optic nerve) and I was told that they "got it all." I've been been naive, perhaps, in thinking that meant my meningioma would not come back because they "got it all." So after reading your post I'm a little concerned. Also, I am assuming you have only seen a neurosurgeon. Perhaps you could ask for a referral to a neuro-opthalmologist to discuss your concerns about radiation compromising your vision.
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3 ReactionsHi Maryann,
Thank you for your reply!
Unfortunately, no, there was what they termed ‘residual’ tumor remaining after my first crani. I kind of always knew there would be a chance for recurrence, just hoped it wouldn’t happen. Thank you for the neuro-ophthalmologist suggestion. I will get on that! I’m so glad that your vision withstood your crani!
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2 Reactionsdbarn68: Thank you for your reply. I will put any worries about the meningioma that was removed near my optic nerve on the back burner. Sorry you're going through this scenario again. But glad to hear you are seen at Mayo Clinic. I am sure you will get good advice and excellent care.
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2 ReactionsHi, I haven't watched this webinar yet, but Stanford has a support group and this was the last webinar: https://www.youtube.com/watch
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2 ReactionsHi, thank you so much! It was very informative.
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1 Reaction@dbarn68, wondering what you decided about treatment. What type of radiation is being recommended? How are you doing?
Hi Colleen,
Thank you for asking!
IMRT has been recommended by Mayo and by Duke. IMRT is traditional photon radiation. I have a consultation in mid-July for proton beam radiation. After that appointment, I will decide how to proceed. 🙂