Funky eye/optic nerve issues - looking for personal anecdotes

September 1, 2023 6:52 AM

I was referred to an opthamologist at my last optometrist appointment due to my optic nerve looking inflamed. I went to the opthamologist this week, and left with more questions than answers, and a little bit of anxiety. I have Googled and found lots of very detailed medical eyeball things that are not really helping me; I am looking for personal anecdotes from people who have had similar issues or diagnoses. More medical detail under the cut.

My optic nerve shows signs of "cupping" , and my visual field test shows that I have less peripheral vision than I should. These are two indicators of glaucoma, but my eye pressure is OK. I don't have any head trauma that I can recall, and no history of glaucoma, eye issues, diabetes, anything. My eye doctor's reaction was "OK. 2 tests are saying that you have glaucoma. I don't think you do. I think you may have had a head trauma when you were very young, or this is just a congenital thing. We will wait six months to see if it progresses. If it does, then it's likely glaucoma, if it doesn't than it's the latter. There's nothing you can do either way - no medication, supplements, anything. Just don't worry about it and come back in six months".

I am not good at not worrying about things. I have Googled this, and there is a lot of detailed eye medicine reports and journals and studies; that is not helping me right now. The only thing that I found useful is that some people that are "clumsy" actually have reduced peripheral vision - that tracks for me, I'm always running into things. So, my ask here is if anyone has had something similar -- optic nerve damage, or positive glaucoma tests without glaucoma, and what your experiences have been, and how it's affected your life.

posted by Sparky Buttons to Health & Fitness (12 answers total)

For reasons that I can never remember but seem compelling to doctors, I am high risk for glaucoma and get screened every six months. There is something about my optic nerve, but I will be darned if I remember what, maybe it’s the same? Going through the screening in a timely way is all you need to do, and they will tell you if/when you need the medication. That’s important for not going blind! Bonus, all the screening resulted in an early diagnosis of cataracts, so…yay? Just keep up with the screenings, that really is the protocol.
posted by chocotaco at 7:00 AM on September 1, 2023 [1 favorite]

I recently had an examination by an ophthalmologist with results similar to yours. Some optic nerve cupping in one eye, some loss of retinal pigmentation, but nothing out of line for someone my age. My response: I eat more kale.
posted by SPrintF at 7:55 AM on September 1, 2023 [1 favorite]

Hi! I'm reluctant to answer; the last thing I want to do is contribute to your anxiety. But I also do have some experience in this area. I want to emphasize that I am not so much answering your question for YOU because I can't know! I am mostly putting this on people's radar because I wish it had been on mine.

I'll start by saying that I'm OK and you'll be OK too. Truly! When my optometrist sent me to an ophthalmologist for some optic nerve weirdness, I got a similar response: Let's see what happens with this. If it goes away, don't worry about it. It went away! But I do wish I had asked a few more questions or juxtaposed it with other small, odd symptoms -- I hesitate to even use the term "symptoms" because I didn't recognize them as such at the time.

In my case, it turned out to be multiple sclerosis. Not exactly what anyone wants to hear! Also treatable in many cases and better if caught early. Please don't go down a Google rabbit hole on this one. It is a highly variable disease. Do ask a doctor next time you see one.

Take care of yourself, physically and mentally.
posted by fruitslinger at 10:25 AM on September 1, 2023 [3 favorites]

As it's been explained to me, glaucoma is definitionally about certain changes to the eye, and increased pressure is just the one big thing they know correlates to those changes in a causative way. So it's possible to have glaucoma without the increased pressure, and it's possible to need glaucoma medicine just to keep the pressure under control and hopefully prevent changes (that's my situation right now). However, since your pressure is normal and it's unclear that the cupping and/or limits to your peripheral vision actually represent changes, what your doctor said makes sense to me. I know it's very hard to be told to wait and find out if something insidious happens or not, so I'm sorry, but this is consistent with all the conversations I've had with glaucoma specialists over many years.
posted by teremala at 10:53 AM on September 1, 2023 [2 favorites]

If it's worth anything. I do have a family history of glaucoma, which means my optometrists always give me extra testing to check and see where I'm at. I have large optic cups and while that can be a sign of glaucoma, I've been assured that because I have no other symptoms of glaucoma... that's just how my eyes are! Something to watch and see, but nothing to worry about in advance. Recently, I had to re-take a visual field test that I took in January. I actually got a better score on it than when I initially took it in January. What stops me from worrying about any possible glaucoma or other visual issues is that... the optometrist is there to help me. The earlier anything is caught, the better.
posted by VirginiaPlain at 11:24 AM on September 1, 2023 [1 favorite]

I literally have a glaucoma specialist who I saw very often for a year or so to get a baseline and now I’m actually overdue for an appointment (so thank you for this question, it reminded me) but basically nothing has changed and it has affected my life not at all except for some extra appointments that aren’t terribly comfortable. But this is a thing that if it will affect you, tends to move very slowly, and there are treatments, so you should just follow up as your doctor tells you and it will most likely be okay.
posted by jeweled accumulation at 11:41 AM on September 1, 2023 [1 favorite]

My optometrist said I had high pressure in my eyes and sent me for additional tests in case of glaucoma. It turned out I just have unusually thick corneas which apparently also gives that result. All fine!
posted by Rhedyn at 12:32 PM on September 1, 2023 [1 favorite]

I was diagnosed with glaucoma about 18 months ago after a regular eye check where I was missing 15% of the visual field on my left eye, even after they repeated the test 3 times on different days. Mine’s more central than peripheral vision loss.

It’s possible to have glaucoma with normal eye pressures (called regular pressure glaucoma or normal tension glaucoma) - this is what I have. Means my pressures are in the “normal” range, but are too high for my particular eyes and have damaged the optic nerve.

Some good news that might help you during the waiting period:

* YMMV given that you have peripheral vision loss and feel like you can already feel some effects. But FWIW, I’m missing 15% of the vision in my left eye and it’s completely unnoticeable. Our eyes and brain are amazing. With the information from my good eye, plus all the information my dodgy eye picks up as I look around the room, my eye stitches it seamlessly into what looks like perfect vision (in fact, that’s one of the trickiest things about glaucoma - unless you’re lucky enough to have it picked up in an eye test, you likely won’t realise for yourself that you’ve got it until it’s pretty advanced). Those of us who get it picked up through testing are the lucky ones, because…

* Treatments for glaucoma are good. The only way it’s impacted my life so far is having to take eye drops to stabilise my pressures. If doctors decide you have glaucoma they’ll probably prescribe you eye drops, and if you take them routinely as prescribed, you have a good chance of your sight staying pretty stable.
posted by penguin pie at 4:16 PM on September 1, 2023 [2 favorites]

My eye issues don't seem to line up too well with your eye issues, but I would make this comment on the stress front: in my experience, typically getting in to see a specialist for the first time is the hardest hurdle. You now have an established relationship with the ophthalmologist, so if you do have deterioration or new issues popping up, it should be relatively easy to get in to see them quickly and get treatment.
posted by ktkt at 5:20 PM on September 1, 2023 [2 favorites]

I'm in the same boat as penguin pie. No need to worry. I would just get it checked out, and if you do have glaucoma, take the eyedrops that are prescribed, and you will be fine. I have moderate vision loss in my left eye and it is really not noticeable at all. I just go in for regular checkups to make sure things look stable. I've been taking these drops for maybe 7-8 years with no change in vision so far.
posted by extramundane at 10:56 PM on September 1, 2023 [2 favorites]

I am also a very anxious "glaucoma suspect" and get checked every six months. I apparently have tiny and cupped optic nerves, but nothing has progressed in the 2-3 years I’ve been followed with visual field tests and optic nerve scans. The doctor said we could go to yearly after a few normal six-month checks, but I’m more comfortable with the six month schedule because I also have other retinal risk factors. One thing that helped reassure me was the doctor looking at my history, noting that I reliably show up at for exams at appropriate intervals, and saying that with regular checks like this they’d see changes before my vision was affected. I still get very anxious when exam time comes, but it helps to know that.
posted by kite at 1:02 AM on September 3, 2023 [1 favorite]

Response by poster: Update! I had my six-month check today, and everything is stable. In talking with my husband, I had completely forgotten about when I was hit by a car (as a pedestrian) in my early 20s. I mentioned that today, and the optic nerve is way worse on the right side which is where I took most of the impact, so it makes sense that it's damage from that trauma. I don't have to go back for another year, but if that is good I get released to just a regular optometrist. Thanks for all of your stories, they were very reassuring!
posted by Sparky Buttons at 4:42 PM on February 21 [1 favorite]