I never had papilledema, but within the year or so after I went into remission from IIH, my ophthalmologist thought my retina was thinning slightly on the right and showed it on the retinal scan. However, my more recent retinal scans are normal, and my new ophthalmologist thinks my retina is fine. I'm not sure if it was a transient thing or if the first ophtho was over interpreting things. so, I don't know what is going on with your retina, but maybe this is a normal transient finding and it will resolve or not progress? I would not worry too much about it and just keep following it.

Thanks for responding so quickly, I appreciate that! I had papilledema from IIH, I found out I had IIH through my ophthalmologist who diagnosed me with papilledema and then I of course went through all the MRI's and finally a spinal tap. I wonder if maybe the thinning is just the damage from the optic nerve being swollen for so long (although I think I only had it for about 3 months before being diagnosed)? I am trying not to worry, and am still being monitored every 4 weeks with my ophthalmologist, I am just afraid now it is something like optic nephropathy and that of course scares me. Part of the eye tests they do is an OCT test and it graphs out all the quadrants of the eye to see where the swelling still lies, green is normal, white is the build up, yellow is thinning and red is damage. I hope and pray it doesn't lead to the red part :( I thought that once the pressure is revealed and the optic nerve goes back to normal that there wasn't a worrisome for vision loss. I read some articles about the association and of course now I am freaked out :(

well, I was in the yellow and now I am in the green. this may be a case of VOMIT: Victim Of Modern Imaging Technology. we wouldn't know it was there without the test and maybe it means nothing and we get spun up about nothing. :-(

I’m not sure what RNFL stands for but I did get testing routinely for it. I had severe papilledema and retinal hemorrhaging. When I went into remission I had thinning of my optic nerve and was told that part was basically dead that I would have vision loss in that spot that was thinning out. My NeuroOphthalmologist told me that was normal when the optic nerves are swollen and stretched for so long that can happen. It was just a part of one of my optic nerves. I was on 2000 mg Diamox for almost six years.

Thanks for responding! Did you incurr vision loss well after you went into remission? Or was there already vision loss in the thinning area that you noticed before you went into remission?

I’m trying to determine if I need to prepare myself for vision loss now that I am in remission. I thought that once you go into remission your vision would return and you wouldn’t loose any more vision. I have full vision now but I do have a blurry spot in my right eye on the right side. I can only see it if I am only looking out of my right eye with my left eye closed.

No you should not have anymore vision loss from what I was told unless you get papilledema again. I have the same problem as you in the eye with the thin nerve. I can only tell if I close the good eye. So if I were looking at a straight line there would be a kink or squiggly in it. Objects are more distorted than clear and straight. It’s really hard for me to describe. I have 20/20 vision except that issue. I was told no more vision loss should occur. I know these things can be scary! Good luck!