Optic nerve atrophy

The diagnosis listed in this thread title was actually given to me twelve years ago. I was only twelve at the time, and nobody could give me a straight answer as to why this happened—it wasn't caused by any trauma or nerve damage from an accident. I’ve been through an exhaustive battery of tests, ranging from neurology to ophthalmology, and even saw a neurosurgeon, yet no one can provide a definitive diagnosis. Just eighteen months ago, I went to the Oracle clinic to use what was supposedly one of the most advanced MRI machines available, and even that scan came back "normal." It showed that my optic nerves are thinner and shorter than they should be, but there’s nothing in my brain pressing against them to cause that atrophy. I also sought out specialists at Eres, where the doctor suggested that the issue isn't the eye itself, but rather some internal process within the brain—yet the MRI completely ruled that out. I’m wondering if anyone else here has dealt with a similar experience or a comparable issue? If you have, how did you handle it, and did you ever find a solution? Also, could anyone recommend a top-tier ophthalmologist? I’d honestly prefer a private specialist if it means I can actually start tackling this problem immediately. I feel completely lost; every time a glimmer of hope appears, it turns out to be nothing. 😢

I should mention that my vision is steadily deteriorating; it’s getting worse, which makes it clear that the atrophy hasn't stopped. Plus, being a college student, my eyes are under constant strain from studying.

Speaking as a physician, here is my take. Optic nerve atrophy isn't caused by just one thing; there are numerous culprits. We’re looking at glaucoma (nerve degradation due to high intraocular pressure), inflammation, ischemia (blood flow issues), edema, physical pressure on the nerve, trauma, or toxic damage from things like alcohol or certain medications. You also have to consider optic nerve tumors, such as a glioma, or even hereditary forms where genetic defects cause the nerve to fail.
Because this is such a complex field, you need a specialist in the specific branch known as neuro-ophthalmology. In the US, a premier center for this kind of work would be somewhere like the Mayo Clinic.
In my opinion, you should schedule an appointment there for a formal consultation. Since they are undoubtedly the leading experts in this niche, I highly recommend them. Medical technology has come a long way, allowing us to diagnose conditions today that were completely invisible to doctors decades ago.
Best regards. Wishing you the very best. Hang in there. 👍

Thank you so much for all the help! I have an appointment this Tuesday with Dr. Henck—she comes highly recommended for her diagnostic skills—and once that's settled, I’m going to try to get my medical records transferred over to the Mayo Clinic. I've already heard great things about Dr. Cerovski there. Honestly, I am just in disbelief at what you're telling me regarding the potential causes. Every single ophthalmologist in San Francisco was just obsessively looking for some kind of brain tumor pressing on the nerve. Once they failed to find anything, they just wrote it off as being genetic and left it at that...

I’m asking anyone here dealing with an Optic Nerve Hypoplasia (ONH) diagnosis to jump into this thread and share what you've been through.

DEFINITION
Optic Nerve Hypoplasia (ONH) happens when the optic nerve doesn't fully develop during pregnancy. It's essentially a glitch in the natural process where the nerve fiber background forms while the baby is still in the womb. While it can occasionally show up in just one eye (unilateral), it's much more common for it to affect both eyes (bilateral). Just to be clear: ONH isn't progressive, it isn't hereditary, and there is no cure. It stands as one of the top three causes of visual impairment in children in the US.

CAUSES
In most cases, we have no idea why ONH happens. It’s rarely linked to things like maternal diabetes, alcohol use during pregnancy, certain anti-seizure medications, or the mother being under 20 at the time of birth—but those are outliers compared to the vast majority of cases. From what we know, ONH hits every race and socioeconomic group equally.

CHARACTERISTICS
- ONH can occur on its own, or it might come paired with neurological or hormonal issues. Those hormonal problems might stay hidden during childhood only to pop up later in life.
- Vision varies wildly in kids with ONH; some have near-normal acuity, while others have no light perception at all. Field loss can range from a general lack of detail in both central and peripheral vision to a subtle loss of peripheral sight.
- A high percentage of kids with ONH also deal with nystagmus—those involuntary, rhythmic eye movements. Usually, nystagmus is tied to significantly reduced vision in both eyes.
- ONH is a stable condition. Vision won't get worse over time. In fact, you might see slight improvements in vision as the brain matures, or sometimes the nystagmus might even settle down.
- If vision loss is significant, depth perception can be heavily impacted.
- Some people may also experience mild light sensitivity (photophobia).

So, I just got diagnosed with optic nerve atrophy in my left eye... my vision’s been getting worse for the last six months—everything's just blurry, some days better, some days way worse, and lately, I'm even losing my depth perception. My ophthalmologist sent me to a neurologist, so I did an MRI of my brain, an ocular ultrasound, and a VEP... based on those results, she said it isn't a neurological issue, just a straight-up eye problem, and told me to stick with the ophthalmologist. But then—get this—she's sending me back for *another* MRI, this time focusing on the orbital area, plus another VEP because she thinks the first round wasn't "relevant" enough. Honestly, I have no clue what she's thinking... I've got a bad feeling this whole thing is just going to end with "unknown cause" and nothing solved. Anyone else dealt with this kind of runaround?

I'm not sure where you're currently seeking treatment, but if you can, I really think you should try to get an appointment at the Bascom Palmer Eye Institute. The facilities there are top-notch—from what I've seen, they even got all this brand-new equipment when they moved their outpatient services into the new wing. Plus, the doctors are absolute experts, and more importantly, they're genuinely kind people who actually want to help. If you can't manage to get in there anytime soon, maybe consider going to Exact for a private consultation? A lot of the specialists from Bascom Palmer used to work there, at least. I guess I'm not entirely sure how the staffing is lately, since it's been quite a while since my last visit. But, I remember when I needed help a few years back, they stepped up immediately and everything turned out fine, mostly because I made sure to get there early enough.

thanks for the tip....I'm getting treated in Miami right now--well, not really "treated" yet, they're just running endless tests and saying they don't know what's causing it...for now. But from what I hear, sometimes the etiology stays a total mystery...anyway, I'm definitely gonna try my luck at the Mayo Clinic or one of those private clinics...what was your actual cause?

It’s not quite the same situation as yours. Back in 2009, I had this sudden retinal detachment out of nowhere due to some retinal degeneration. It was pretty scary—I had to rush in for emergency laser surgery just to patch things up so the detachment wouldn't spread and I wouldn't lose sight in that eye entirely. Honestly, the team at Mayo Clinic was such a lifesaver; the doctor actually came into the clinic specifically for me that day just to perform the laser procedure. A few days before all that happened, I had gone to see a private specialist, Dr. Vukas, for the exam that people have been mentioning here on the forum... and he completely missed a massive retinal tear. He gave me some really strange explanation for my symptoms, too, which didn't make any sense to me since I follow medical news quite closely. So, I guess I was just incredibly lucky that I sought out a second opinion from a more conscientious, skilled young doctor and that I ended up getting the help I needed at Mayo Clinic. I was only 31 at the time.

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alright... yeah... that’s a whole other headache. right now I’ve still got an orbital MRI and a repeat VEP scheduled, then in about a year I'll be heading to NYC to either hit up the Mayo Clinic or just find a private specialist..

Good luck. I really hope everything works out just as well for you as it did for me.

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