Any Optic Nerve Meningioma Patients Who've Had Surgery?

I’m so sorry. I hope it gets better after the current treatments.

I had a craniotomy surgery on 9/2022. This was a frontotemporal tumor 3x4 cm that has grown into a sphenowing meningioma. Prior to surgery I had double vision, and my left eye was protruded 4mm. Surgery went great, and my vision was preserved. In March of this year another tumor was found, a left sphenoid sinus tumor 2x2 cm. Had surgery again, this time through my nose so recovery was faster. I still have a remnant laying against my oblique eye muscle. No symptoms but since I had 2 surgeries in less than a year, and this is tumor that re grows, we looked for a second opinion for the remaining behind my left eye. I have been recommended radiation ( likely proton bean or photon radiation). I'm inclined to do radiation, but I'm scared about losing my vision. The radiologist says explained well the side effects including problems with the pituitary gland. Anyone who has undergone this type of radiation? Pray to the lord for all of you and our health.

Thank you for posting about your craniotomy surgery last Sept. (2022) I am facing a similar surgery in a month because of a left, sphenoid wing meningioma and I am scared and nervous. So it was very helpful to read that your surgery went well. Could I ask after the first surgery, the craniotomy, how many days/weeks until you felt like yourself and pain free. I only ask this because you mention that the recovery for the second surgery went faster than the first and I am not having the surgery through my nose. I am sorry to hear you are now facing another procedure.

I was in surgery for 12 hours. I spent a night in the ICU, 2 days in regular room, and 5 days in a rehabilitation clinic because my balance was off. I went home 7 days after surgery. I felt fatigued a lot during the first weeks so slept a lot. Every week I got better. I had double vision for 10 weeks and that was the hardest part. Once my vision was good, I felt much better and able to go back to work by week 12. As for pain, this was the first week. They put me in anti-seizure and pain medications for 10 days, after that it was just tylenol and I never got bad headaches, so that was great. Hope this answer your question.
I wish you the best. The doctors and technology for these surgeries are amazing. God is with you!.

Thank you, Pat. Very helpful information.

I’m curious if you are able to drive? The Vaseline coating resonates with me but my vision feels like I have thin gauze over my eye. I have my first neurosurgeon appointment in two weeks to figure out a treatment plan.

I had a crainiotomy Aug 2023 in the south for a left frontal meningioma pressing on my brain - causing a few headaches over time and then one excruciating headache that made me realize something was not right. Immediate MRI and surgery - It was resected. The hardware implanted in the bone flap was infected. Had a washout surgery for infection in October. Extreme headaches required removal of all hardware and 6 weeks of daily antibiotic infusions (only a few minutes per day) in January of this year. Flap had not healed to surrounding bone, but have been told that should not be an issue. Will see how it goes. Another meningioma is above my right eye. Both are/were about 3cm around, this second one wrapped partially around carotid artery and abutting optic nerve. Am currently undergoing 28 treatments of proton beam radiation treatments at Mayo for second meningioma. Great team, incredible care. I've taken each step at a time. Have had good surgeons...things can happen. Presume I will be having continual follow-up MRIs in the future. Proton beam therapy is what I call "Star Wars stuff." It is amazing, and I am hopeful it will keep my current meningioma from growing and look for the best.

How did you know you had an infection after surgery? What were your symptoms?

There was yellowish material oozing from my surgical site, after which a washout surgery was done that did not remove the infection. Very painful headaches with several trips to the ER that finally a plastic surgeon recommended removal of all hardware, some bone chip/slivers and cement. After that was all removed, the headaches ceased completely. I have not had headaches since.

Thanks for the reply. I'm sorry you had to go through that but, wow, what an ultimate successful resolution of the problem/headaches.