Questions about NAION Nonarteritic Anterior Ischemic Optic Neuropathy

[BrentJansen2092]

I know "self diagnosing" is advised against but I couldn't help but to think NAION sounds dead on what I went through. In June I woke up several times to a complete blur and ever since my vision has degraded. Blurriness, Nearsightedness, Poor night vision, dimming where lighting isnt as bright and seems to get worse month by month

I also have the risk factors of NAION down to a tee HBP, High Cholesterol, I'm a bigger guy (350-370) so I suspect I have sleep apnea, I have very a mild heart disease, I dont know if I'm anemic but my blood counts have been lower than normal the last few times, I have sickle cell trait and used to take BP meds before bed.

I can't confirm I've had NAION or some sort of AION because every time doctors looked at my eye images they said my eyes "looked great". This is from 3 different Ophthalmologist. I've even had amarosis fugax in my left eye and they couldn't find anything wrong with my brain or eyes. What am I? Wolverine? Get injured and self heal in seconds?

The only thing that signals that I have something wrong with my retinas is an ERG I took that was abnormal. But every time I showed them to the doctors they dismissed it and relied solely on the imaging and their exams. Then they all told me "well you just have dry eyes." The last one I saw last month told me to take artificial tears and come back if things don't improve. Well low and behold things got worse.

After my retinal specialist appointment last week I now have a Neuro Ophthamologist scheduled next week. But I'm wondering if it's even going to be worth it

I'm done ranting. I just want others to know that doctors have to be pushed in the right direction and not have their discretion solely relied on. I'm a believer in being intense when it comes to approaching doctors about your health. Give them the most amount of information possible, push back if something doesn't sound right, ask questions.

Questions for you Dr. John Hagan:

1. If I did have NAION or some sort of AION, then why didn't it show up on the imaging? Are some people indestructible?

2. I have read a lot about how the damage mostly permanent, but with my eyes being in tact structurally is that an indicator that my sight could recover? Especially with losing weight and dieting?

3. I take amlodipine/valsartan 10-160, I'm going to ask my doctor this but I still want your input. I read about blood pressure medications playing a role in reducing blood flow to the optic nerve. Is it possible that my BP meds is damaging my eyes? If you knew BP meds was playing a role in your patients eye health would you tell them to stop taking them?

4. Kind of a throwback to number 2. Most literature online says the ideal time to treat is within the first 2 weeks. But with my imaging being perfect according to my doctors, is that time period extended? Could something like eye drop steroids work at this point?

5. Will an neuro ophthalmologist examine me differently from others? Or do I need to bring send extra information and bring extra information to convince my doctor of what happened so I can get treatment if it's possible

6. Why are doctors dismissive of ERG's? My doctors were all older 55+. I'm thinking it's an old school mentality thing (we don't need none of that new age techy stuff just look at the eye), but I could be wrong.

That's all I have for now. If I think of more I'll ask

[John C Hagan III, MD, FACS, FAAO]

You absolutely, positively need to see the neuro-ophthalmologist, they are the Sherlock Holmes of eye profession. Finding an obscure diagnosis when other eye doctors cannot.  NAION is NOT a difficult diagnosis to make especially since you saw a retina surgeon and I'm sure had a fluoroscene angiogram. KEEP THE NEURO-OPHTHALMOLOGIST APPOINTMENT.

[BrentJansen2092]

I got a Neuro Ophthalmologist office visit. He was mostly dismissive, wouldn't listen to my full story, wouldn't consider my symptoms, but I was at least able to get him to recommend an ERG from my retinal specialist. His reasoning was he couldn't trust the ERG from my optometrist because it didn't have an interpretation. A lot of doctors think if the imaging looks good it means the eyes work fine and I can say that's not the case at all. My retinas look good, but they don't work like they look. My neur-ophthalmologist also asked if I had Sleep Apnea. He suggested that the oxygen deprivation could be causing eye issues. I had a sleep study this past night and I could say for sure I have sleep apnea. But I'm going to hold off on saying that's the cause because I don't know. Overall, this process is making me lose faith in the institution of medicine. I feel let down so far because I had to fight to get answers.

[John C Hagan III, MD, FACS, FAAO]

Every person that goes to doctors has at had sometime a symptom that cannot be diagnosed. Often these go away without a cause being found. In others new symptoms appear that make the diagnosis easier or readily apparent.  Some of people's symptoms remains for long periods, never get worse and do not cause any harm. Hopefully you are in the latter. Get the ERG as directed, if normal ask the neuro-ophthal if you can report any new symptoms, then move on with your life. I have been doing the forum for over 15 years, there are many similiar posts where people have had visual symptoms for many years that are unaccounted for but never lead to harm. Many of these indivisuals are anxious and focus their anxiety on their body.  There is not much more I can say except get the ERG, report any new symptoms to the neuro- and retina ophthalmologist have a yearly exam by a comprehensive ophthalmologist.  SIGNING OFF