Any Optic Nerve Meningioma Patients Who've Had Surgery?

@mrector and @kelleroberts Wow, as much as it pains us to learn that there are others dealing with this, it almost is a relief too. Just knowing that there are others who understand; especially when no one else does. But, how could they, right?

I totally get the pain after TRYING to focus on something. Oh my goodness, especially after vision testing, it hurts so badly the rest of the day. Bright light, reading, using electronics, you name it, I pay in the end. 🙁 I've tried eye patches, a bandana, etc. It would help some to keep it covered, but the fabrics irritate my eye, argh! So, now I just close my left eye when I'm doing things or it is bothering me.

I am at the point where I just want them to take the dang thing out. I even asked my optometrist if she could find me a "black out" contact for my left eye. Unfortunately, they cost around $200! 😲

I close my left eye too quite often. My neurosurgeon stopped my surgery before I was blind that day, but I almost think it would have been better to be completely blind all the sudden instead of losing vision slowly.

My sister works for my ophthalmologist.. I ask all the time if they could just pop my eye out and be done with it..I also have tried cover my eye, but sometimes that is worse. I have also rodeo'd my entire life, barrel racing, I am struggling with that now also as I have zero depth perception. have any of you done the radiation treatments? That is what they are thinking of next. My next appt is the end of June, so I guess we will see. Thank you for sharing with me. It does help knowing that others understand what I am going through.

My depth perception is bad as well. My neurosurgeon told me if my remaining tumor starts growing that I will have to do radiation. I go back in September for another MRI and checkup.

I had one surrounding my left optic nerve. I was unable to keep the vision as they had to remove the entire optic nerve.

I am so sorry to hear that. The same thing happened to my brother, same eye as yours. We found it weird that a brother and a sister with two different fathers both had meningiomas. I had many and he had one, but he is blind in his left eye. I need another surgery on my right eye and I'm so afraid that I will completely lose my vision in that eye. My brother has adapted well, he can drive, hunt, etc. all the things he enjoys doing, and I'm hoping you can as well. My best wishes. peg

Hey guys, been a while. Had a follow up MRI done and the tumor has progressed into the soft tissue. We also found that the tumor in my brain has regressed, at least that's good news. I am still struggling with the doctors in my area as none of them know what to do. I am beyond frustrated. I still have constant discomfort; I limit my daily activities or else risk having to lay in bed, sobbing, because the pain is so much. I have relayed this information to doctors, and still, they will not provide me with anything for pain relief. I am currently on gabapentin and Celebrex. They help to an extent, however, when it gets really bad, it doesn't help at all.

I have had several vision tests done and the results vary. I keep asking if they want me to strain or not to see (which causes more pain from trying to focus) and they won't give me a solid yes or no. So, it seems to run anywhere from 70/20-90/20.

@andavis1189 when was the decision made to remove that nerve? I have mentioned several times to doctors that I'm at the point of just one of the eye removed.

Out of all of the replies on this thread was anyone diagnosed as a teenager, and in their late 20's early 30's now? I struggle with the fact that I haven't met anyone my age that has been through this and would like to connect.

I was not diagnosed as a teenager but looking back I believe I probably had the tumors then, a slight eye bulge, etc. but didn't get diagnosed until 2010 at age 60. When I look back on my pictures one eye is definitely a bit different than the other. I am sorry to hear that you are going through this, but we're here for you. Wishing you all the best. Peg

@andavis1189 Not knowing another person with a particular medical condition seems very hard to take. I feel the same way. In my case it's "burning mouth syndrome" (or something like that). It's daily torture, no real treatment, numerous docs know nothing about it, and those that do offer no cure and barely any relief. This topic comes up on Mayo discussion line, but I have never met or heard personally about anyone with it.