recently diagnosed meningioma

[Beatmeningioma]

I have a 2 cm meningioma near my optic nerve.

If anyone had or have meningioma in this location, please share your experience. If you had surgery, who was your surgeon and at which hospital?

Thank you.

[Margaritame]

Hi. I had a meningioma wrapped around my right optic nerve. I was losing vision quickly. I had a craniotomy at Vanderbilt by Dr. Reid Thompson. He was able to get it all! Which is quite unusual. Most of my vision returned. I will always have some loss of vision in parts of my peripheral vision, but I can't recommend Dr. Thompson enough. In San Antonio is another excellent skull based neurosurgeon, Dr. John R Floyd.

[Beatmeningioma in reply to Margaritame]

Thank you so much for sharing your experience and information about Dr. Thompson. How long was the recovery? How long were you out of work for recovery? How long were you in the hospital? Was it painful? Did you have headaches and seizures?

[Margaritame in reply to Beatmeningioma]

Sorry for this delayed reply. I was supposed to be discharged post op day 3 or 4, but had blood pressure issues so was there an extra 3 days. I was out of work 9 weeks. No seizures. I had headaches for awhile. My biggest complaint is ongoing scalp pain. It's been a year and I still have pain. Much less pain, but it'd there. My scalp is very tender to touch and it aches and burns at different times. Now is one of those times. I go to a pain clinic. Lyrica has helped some. This chronic scalp/head pain is a very uncommon outcome and so no one really knows how to treat it or what is causing it. It's been a rough year. I had PT for about 6 months and am still doing vision Exercises. Getting back in the groove at work has been difficult. Other people always have an opinion on when you should be over it or back to normal, which can add stress. All this being said, I did get some vision back and I didn't go blind. That's a pretty good outcome.

[Bananabag]

Hi and sorry to hear of your diagnosis. I had my craniotomy 14 weeks ago. It was on my optic nerve and affecting my vision. No other symptoms. In hospital 4 days. Quite severe headaches for 2 weeks then reducing and gone by 3 weeks. Swelling also much improved at 3 weeks. I started to feel better/less tired at 3 weeks and really turned a corner at 6 weeks when I returned to my dance passion of modern jive. I am 73 so can’t comment on return to work.

My colour vision improved immediately. Everything very bright! My field of vision is also back to ‘normal’.

My scans are clear. I had 3 meningiomas removed, all non malignant. I am delighted with my progress but am really struggling with not being able to drive for 6 months!

I wish you well with your own procedure and recovery.

[Walk24]

hi there , I had a large tumour pressing on both my optic nerve , and was causing vision problems ( in fact that’s how they found mine ) I had it removed over a year ago via endonasal surgery . I have regained my vision , and recovered quickly . I am back at work and able to drive . My surgeon was Dr Abhinav he is Based at Bristol hospital but trained in the USA . He has a website . He was excellent .

[Keste]

Hi Beat, just sent kind thoughts. I’m here in NYC. My meningioma is right parietal. Monitoring since 2018.