Any Optic Nerve Meningioma Patients Who've Had Surgery?

Hi @kiturah,

Welcome to Connect. You may notice that I moved your message about finding others with facial pain after surgery, to this discussion. I did this so that members in this discussion will get a notification of your post, and can respond; I also noticed you had recently joined in this conversation about Optic Nerve Meningioma patients, and thought it might be easier to reconnect.

Eight years is a long time to deal with facial pain; how have you been coping and managing, @kiturah?

Hi. I am recouping from optic nerve meningioma which I had last Wednesday. It was a hard 4 hr surgery. Stayed overnight in neuro ICU. Had a massive headache for a few days but getting better each day. Surgeon was able to get almost all the meningioma except some cells on and too close to the optic nerve. It is an exhausting recovery but each day feeling a bit better. Glad I did this surgery to preserve my eyesight.

My wife underwent cataract surgery in Apr 2018. She continued to have cloudy vision, was told to have a brain scan (MRI) and the result was that she has a 1.3 cm x 1.3 cm x 1.5 cm meningioma that is pressing against the optic nerve. That is why she has cloudy vision and has failed 3 vision tests (lost peripheral vision). This was all confirmed by a nueroopthalmologists and she now scheduled to see a neurosurgeon for options regarding treatment. Like you, I don't know exactly how my wife and I should proceed.

Hi @israel53
I thought I'd check in to see how you and your wife are doing? What course of treatment did you, she and her care team decide to take?

Hi Nancy. Sorry for not replying sooner. It's been a worldwind. From Orlando to Baskum Palmer Institute, Miami and now to Mayo Jacksonville. Still not sure what to do. Some doctors recommend drug therapy while others recommend fractionated radiation and yet others say surgery is the best option. Do you have any ideas? Thanks for remembering us.

Hi. My wife is considering surgery for a meningioma pressing on her left optice nerve. Options provided was to operate through the top of her skull or above her left eyebrow. How was yours performed? How long did you remain in the hospital? Did you or will you need radiation on the tumor remnants? I'd appreciate the information, my wife is scheduled for surgery in a few thank you. Israel, Orlando, Fl

My tumors were all in the left frontal lobe so there were no options given. I had a craniotomy and my surgeon was able to removed one skull window piece in order to reach all the tumors from that one area. I recovered for 1 day in icu and one day in step down and was sent home after 48 hours post op. I thought it was a little too fast but I did rest better at home. These neurosurgeons are very skilled and they know best. I did not have any radiation all of my tumors were totally removed and no attached to anything. Ask questions and have your wife listen to her body she knows herself best. Best wishes for great results it's a scary process but she's do well.

I have an optic nerve Meningioma and I’ve had two options for treatment. One surgery cut my skull peel the skin remove most of the tumor. Other option was 6 weeks radiation five days a week. The surgeon says no radiation would damage nerves. The oncologist says no surgery too invasive. I’m so confused is there an endonasal endoscopic surgery and where to get that.

@alpineir

@tammywyatt, I can see why you would be confused when one specialist negates the recommendation of the other. Have you considered getting a second or rather third opinion?
Let me know if Mayo Clinic might be an option for you and I'll post the contact information.