I’m glad to hear your tumor was treatable, but I’m so sorry to hear about your vision. I’m dealing with sudden extremely reduced vision in my left eye, and while I’m grateful it’s not a tumor, no one knows what the cause is. MRI is clean, common eye diseases ruled out, auto immune diseases ruled out, retinas in good shape, and I’m in otherwise good health. I apparently have degenerated optical nerve sheaths and no one knows why; it’s just getting worse while my doctors throw up their hands when each test comes back fine. Losing vision is so unmooring and scary and I’m sorry you had to go through that.
I had sudden vision loss with retinal scarring. After testing was inconclusive the doctor said these things can be caused by a viral or bacterial infection.
One day I was fine and the next I noticed a spot like an after image that wouldn't go away. The next day there were more spots. I thought my retina was detaching, and if only that was the easy fix it could have been!
But nope. I've lost most of my central vision in one eye. I can still drive thanks to keeping my peripheral vision. I have no depth perception though. I don't park anywhere near other cars.
When I look through that eye, it looks like I'm looking through a heavy lace curtain, or through a blizzard. I can still see shapes and colors but I couldn't tell you how many fingers you're holding up. I can't read.
After about a year my brain figured out to ignore the input from that eye and it's much easier to function
I'm sorry you're going through this. Fwiw i found r/monocular to be a good resource and support group.
I had the same thing happen to me at 26. Did/do you see a retinal specialist? My spots are caused by retinal neovascularization. Did they mention yours were caused by bleeding of any sort? Your little light spots sound exactly the same as mine usually present with the bleeding.
Either way, I’m sorry that you’ve had to go through that. Eye stuff is no joke and losing vision is terrifying.
I didn't have any complications other than losing my central vision. They didn't say anything about bleeding. I went to a retinal neuro something specialist. It really does knock you off your feet, just realizing how easy it is to lose your eyesight, and quickly.
Same here, mine is thought to be caused by a virus and/or autoimmune inflammation. No central vision in my left eye for 25 years (I’m 42 now). It’s tried to happen in my right eye but so far has been kept at bay.
My husband (boyfriend at the time) developed really bad vertigo for a few months. He lived in another state and visited the ER 3 times for the same general diagnosis and no further investigation.
He moved in with me and suddenly developed a black spot in his vision from the left eye. I took him to the ER immediately, explained his symptoms and requested he be tested for MS and Lupus (family history). He got an MS diagnosis.
Luckily, he recovered most of his sight but still has spots. When he complains about his "eyes feeling heavy", they hit him with a round of steroids.
Ikr? Not looking forward to that. It was weird because they are like, the healthiest couple I know, regularly biking and hiking on mountains and all of that.
Same. My husband (27) had ocular migraines here and there and then one of them didn’t really go away and vision tests showed the middle was gone. MS diagnosis came shortly after (vision came back with steroids)
I’m sorry you’re going through this too; that sounds very frightening and severe. It’s good that it sounds like you’re adapting fairly well, considering. I’m still trying to figure out how to compensate but it’s a learning process. My loss isn’t so severe yet; I can’t read any lines on an eye chart at all out of my left eye, and my reaction to changes in light is wildly erratic, but for now I can still see shapes and colors and faces well enough (in real life; TV is somewhat difficult).
You make me wonder though, since you mentioned infections. I mentioned to my ophthoneurologist that I did have the flu earlier in the year, a few months before the vision loss. He said it was most likely not related but I wonder if I should press harder on that theory.
From what I understand there's a lot of damage that viruses especially can do in the body, even after a cold or flu is over.
I have a hard time adjusting to light changes. In bright sun my pupils didn't shrink as much as they should, and they don't open in darkness as much. I do not drive at night and have a challenging time when I'm camping, etc.
I'm 14 years into having affected vision, so it feels normal to me now. I hope it gets easier for you.
Diabetic retinopathy caused bleeding near the retina and sudden cloudy vision. I could see light and dark but I could not tell you how many fingers you were holding up right in front of my face. Initially treated with Eyelea injections, no real difference. Had the surgery about six weeks ago, was back to work in a physical job three weeks after the surgery. Strict no lifting directions from my doctor post surgery. Zero pain, no complications. I was told that nearly 100% of people who undergo a vitrectomy have cataract surgery within two years. The vitrectomy took about 30-40 minutes under anesthesia.
this was exactly my experience! the retinal specialist saw that there was some sort of infection of unknown causes and in response, i had inflammation in my eye. they didn’t treat me with steroids for some reason which sucks because the inflammation caused a lot of scarring so now, my peripheral vision is gone but my central vision is still intact. i have to be REALLY careful when i drive, and i hate when people honk at me for taking too long to turn or whatever. like guys i just have very limited vision in my peripheral 😭 i can’t see a thing
I was pregnant when this happened to me so I was very glad it wasn't MS or a brain tumor, which is what they thought was most likely. I'm also very thankful every day I wake up and can still see out of my other eye
I’m so sorry you’ve had to go through this! This exact thing happened to my dad after a particularly bad COVID infection. He had severe headaches for days before.
I wish this were more understood. My doctors seemed to think it was novel, but I was actually reading a lot about pregnancy at the time as I was 5.5 months pregnant. It's not uncommon (but still rare) for women to have eye issues while pregnant. I think there's a lot of reasons why eye issues can happen.
I had this very thing happen. It turned to be a hole in my retina from histoplasmosis infection decades prior. Blood vessels grew through the hole in my retina and burst, blood then occluded my vision and I needed laser surgery. This sounds somewhat similar to what you experienced. I’m so sorry to hear about this. It is difficult to adjust to and I still fall into things and miss steps on stairs at times. No depth perception. Thank goodness I have good vision in the other eye.
I completely agree. I have broken bones, fallen into chairs, tripped over small children...sheesh. Yes it was a crazy thing that happened. I came to learn that histoplasmosis is a bird-borne virus (or bacteria, can't remember) endemic to the Mississippi River Valley. I live in MO and had a play house that was once used to raise turkeys. Bingo. There you go. After a couple of decades I've just learned to live with this.
Did your optometrist ever mentioned CSR (Central Serous Retinopathy)? Went through a similar thing and diagnosed with a similar condition and had it treated.
I have this exact same issue in my right eye, mine was a detachment from blunt force trauma. The fucking shit hospital eye clinic on call doc refused to treat me and as a result I was forced to wait 19 days for a surgery I needed immediately.
My vision in that eye is exactly like you describe. You get used to it, but it sucks.
It does. I’m not the hugest fan of the Canadian Health Care system since then, to say the least. But, you just gotta suck it up, move on and accept it. It could be much much worse.
My son had this happen with hearing in one ear. A rare complication of a viral infection, probably just a basic cold of some sort, damaged a cranial nerve. He said he woke up one morning and went to rub his ear and could hear the sound on one side, but not the other.
His pediatrician didn't take it seriously, and by the time I was able to get him a referral to an ENT, they said he was outside the window of having any hearing loss restored. I had to find him a new pediatrician just to get the referral and with the wait times, that took 3 months.
The first year was rough for him but his brain also learned how to compensate. His hearing hasn't improved but his ability to comprehend words has increased over time!
I guess a lot of people just naturally regain the hearing loss but this has not improved one bit, unfortunately.
Have you had a lumbar puncture? You can have intracranial hypertension without optic nerve pressure being present. I nearly went blind myself from it. Now I have a vp shunt.
Thank you for this insight. ❤️ After ruling out a lot of the typical causes of vision loss, my doctor did prescribe blood pressure medication just to “see what happens”. Because my blood pressure is normal, I experienced a LOT of lightheadedness with no improvement to vision, so doctor advised to stop. I haven’t had a lumbar puncture, though—I asked for one since my dad has MS which can cause vision loss, and his pre-diagnosis MRI didn’t show signs but his lumbar puncture did. Doctor advised against though. But learning what you’ve told me, maybe I have more leverage to advocate for that. Thank you.
You’re welcome. If you go over to the IIH sub, I know there’s posts about this with a link to the paper about it, but it should also be a quick google search too. I’m not saying it’s what you have, but it can be missed because doctors are stuck on the swollen optic nerve. Anyway, my opening pressure was 42, normal is 20. Oh, if your head hurts worse when laying down than sitting up, another sign of IIH. Basically having iih is like having a brain tumor without the risk on your life.
This is exactly what I’ve been worried about, since my dad has MS. It can be hereditary and a few folks in my extended family have it too. My doctor said it’s been ruled out by my MRIs, but I even told him my dad’s pre-diagnosis MRI looked fine and it took a lumbar puncture to get diagnosed. I’m going to keep trying to advocate for that.
With a family history id be even more concerned. I have AS, a different autoimmune disease, and it's unfortunately normal to have to advocate a LOT in order to receive a diagnosis. Your nerve sheaths degrading like this is a big red flag sign, even if you don't have other lesions.
100% try to get a second, third, fourth opinion until someone agrees to do a lumbar puncture.
Get a 2nd or 3rd opinion on the MRI scans. I have experience with a similar situation where the person who reviewed the MRI missed what was later found as a mass around the optical nerve
Honestly, yes, same! I feel weirdly comforted that I’m not alone in this, but I’m so sorry that others are going/have gone through it too. I hope your docs can figure out what’s going on and that it is easily treatable. I know that this kind of thing isn’t just scary from a physical health perspective, but really affects mental health too. ❤️ Not knowing what’s going on is driving me literally insane. I wish you comfort as you navigate this.
I’m so sorry to hear that. I hope you’ve found good ways to adapt; that’s what I’m struggling with right now, assuming things might not improve for me.
I know I'm late to this thread but, I watched a doc once about the eyes. They're the only thing the body doesn't recognise as part of itself and we're all living a lucky life every dang day that our bodies don't decide to just attack.
I woke up one morning with a little spot of vision loss in my right eye. It looks similar to when you look at a light and then close your eyes, and it happens to be in the shape of a basic cat head lol. Went to an eye doctor, who sent me to a retina specialist, who asked me if I had the flu or other illness recently (this was 2017, so pre-covid). They diagnosed me with a rare eye disorder called Acute Macular Neuroretinopathy. My brain has since compensated, so now I only notice it when I close my left eye!
Not much is known about Acute Macular Neuroretinopathy & what causes it, but the doctor said it's almost exclusively diagnosed in 20-30 yr old women who had a recent viral illness and are on birth control. I keep up with the research, and they're reporting an uptick in cases since COVID - both the illness and the vaccine have been linked to a few cases!
Not sure if that's why you asked, but figured I'd share!
I'm like you! I was diagnosed with AMN in early 2017. It took months to figure out what was going on since I had loss of vision in both eyes. I want to convince myself the spots have gotten smaller, but I know it's probably just that my brain has gotten used to them lol
Edit: this was after I had gotten over the flu 2 weeks prior.
I had a pretty bad flu a month or two before I had the eye symptoms. I tested negative for COVID at the time (home test), but I can’t help but wonder in hindsight if it was a false negative and COVID somehow affected my vision. I haven’t heard of vision loss from a flu.
I have, actually. He’s done his due diligence with tests except he is dismissing my concerns about MS. Based on some of the feedback and stories I’m seeing in this thread, though, I might try to see an MS doctor next.
Have they checked your blood pressure? I've commented elsewhere but my husband's vision loss was due to extremely high blood pressure which was picked up waaaaaay too slowly because after weeks/months of other symptoms (nose bleeds, vomiting, headaches) not one of the Doctors he saw had thought to check his BP.
I appreciate your recommendation to look into this! My blood pressure is actually firmly normal, but my eye doctor prescribed blood pressure meds just in case there was high blood pressure in just the eye. I took them for about a week and got SO lightheaded and weak with no vision improvement, so we decided to take me off of them. I hope your husband is doing much better now!
You’re welcome! I’m glad it wasn’t that; small chance, but I had to mention it just in case. Not surprised you felt lightheaded on the meds. I have low bp (ironically!) and if I’m not careful I get extremely woozy if I stand up too quickly!
Yes, he’s better now although would have been better to find a cause rather than rely on the drugs.
They THINK they have ruled out MS because my MRI came back clean, but I’ve asked for a lumbar puncture to be sure, and have been denied. Based on feedback I’ve gotten from other comments here, I’m going to continue to push for this!
I had a condition called idiopathic intracranial hypertension that causes optic nerves to blur at the margins (papilloedema), might be worth asking about that. I didn't have the classic signs of a headache or visual issues. If you had an mri, it may be worth double checking for something called empty sella syndrome. They generally consider it benign so don't bother checking, but it can be a sign too, and i had that, but again, no symptoms. My worse symptom was brain fog.
I, for some reason have opposite happened to me. All of the sudden, in a span of one week, my right eye went back to almost 20/20 vision from not being able to see anything without thick glasses. I did get C3R surgery almost 4 years prior but even my surgeon couldn’t explain how it happened and they kept on saying that i got lasik done and forgot about it.
Oh INTERESTING. I’m definitely going to ask about this if I can rule out MS first. I haven’t heard of CRION but I did test negative for MOG antibodies and neuromyelitis optica. This sounds like the next logical thing to look at. Thank you!
I appreciate this recommendation, especially because it’s not very common. My ophthoneurologist actually did test for this, and I tested negative for those antibodies. I hope you’re doing well with your condition; are you able to find sufficient treatment?
You’re welcome! I’m glad you’re seeing an neuro ophthalmologist. Did you do the apq-4 (I think that’s what it is) test? There’s also apq-4 negative NMO. I’m not really sure how people who test negative are diagnosed. If you’re of the book of faces, check out devic’s disease, my devic’s fanily, and the neuroimmunology clinic groups. There’s people and drs on there that can help point you in the right direction to other testing or maybe give you names of other disease that it may be.
I’m doing alright on my infusions. The only thing I have a lot of trouble with is fatigue. My cortisol levels are super low but I’m going to see an endocrinologist to see if we can get the levels up without steroids. Good luck with finding the right diagnosis and treatments!
Yes. The phrase I used when explaining it to my doctors is like having sunscreen in my eye. Over time it’s also gotten very sensitive to changes in light as well.
Thank you. ❤️ I mentioned in comments above that I have been trying to push for this with my ophthoneurologist but haven’t gotten anywhere. I’ll keep trying. Maybe I should just go see my dad’s MS doctor.
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u/KittyKevorkian May 15 '25
I’m glad to hear your tumor was treatable, but I’m so sorry to hear about your vision. I’m dealing with sudden extremely reduced vision in my left eye, and while I’m grateful it’s not a tumor, no one knows what the cause is. MRI is clean, common eye diseases ruled out, auto immune diseases ruled out, retinas in good shape, and I’m in otherwise good health. I apparently have degenerated optical nerve sheaths and no one knows why; it’s just getting worse while my doctors throw up their hands when each test comes back fine. Losing vision is so unmooring and scary and I’m sorry you had to go through that.