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ABOUT N.A.I.O.N. AND CATARACTS Many NAION patients are older. Cataracts are an issue for older persons. https://en.wikipedia.org/wiki/Cataract. Given questions whether cataract surgery (CS) can cause another NAION event, caution about CS is strongly advised. (https://en.wikipedia.org/wiki/Cataract_surgery) OF CONCERN TODAY .. CS can be delayed .. ONLY SO LONG. That is: the longer a patient waits .. the bigger the issue of INOPERABLE cataracts becomes. Over time, a cataract will become thicker, to the point, it cannot be removed safely. A very complex matter. It is risky, so only the patient can make the final decision. Said patient, being well-informed of benefits and risks involved. —- There is much debate, about how NAION patients should respond to their (ultimate) time with cataracts. Many concerns that cataract surgery — https://en.wikipedia.org/wiki/Cataract_surgery can trigger another NAION event. My NAION M.D., a national NAION expert and USAF M.D. for Vietnam POWs who is now retired .. recommended that I wait until “the absolute last minute” to have cataract surgery. That is, when it causes problems, in daily life.

As I have said I had my original NAION in 2020 which was only a dot and healed over time. But I had the second NAION in my left eye in January this year. At first it was a dot like the other one but the next night while sleeping it took over the entire eye. My vision was 20/400. It’s is now 6 months later and vision is 20/125. The doctor has told me only a 5% chance it will occur in my right eye again. However every time I wake up at night I am panicked that I won’t see. I take my blood pressure and I am on bp medication. I sleep on my back in fear of pressing my cheeks onto my eye. I have had temporal arterectomies on both sides. I have had brain mri carotid ultrasounds and sleep studies. But the fear is real. It seemed ok for awhile but recently started the anxiety again. Any suggestions? Also has anyone ever healed completely that had more than a dot? Anything that helps this condition? Anything that hurts it? Any suggestions would be greatly appreciated! -- Enjoy every moment, Diane

https://www.uclahealth.org/news/article/daily-aspirin-no-longer-recommended-to-prevent-heart-disease

Sorry that’s incorrect. Most NAION victims do NOT have sleep apnea. Marc

Most of you have anemia and low blood pressure. Is it true?

I am still very anxious after I was diagnosed NAION a month ago. Always worried about my other eye. For those of us affected bilaterally, would you mind share your experience : 1, How long apart for two eyes to be affected? 2, Do you manage to live normally after that?

https://www.reuters.com/business/healthcare-pharmaceuticals/musks-neuralink-receives-fdas-breakthrough-device-tag-brain-implant-2024-09-17/ "Sept 17 (Reuters) - Elon Musk's brain-chip startup Neuralink said on Tuesday its experimental implant aimed at restoring vision received the U.S. Food and Drug Administration's "breakthrough device" designation. "The experimental device, known as Blindsight, "will enable even those who have lost both eyes and their optic nerve to see," Musk said, in a post on X. https://x.com/elonmusk/status/1836120537883644049 Hmm .. important to patients with NAION and glaucoma ..

Hello NAION friend, I am a NAION person with sleep apnea and now use a CPAC machine. I have included avlink below for tape that works very well for taping your mouth to prevent mouth breathing. I used it for a few weeks until I trained myself to not open my mouth while sleeping. I have a lot leftover and would be happy to mail a roll to you. Otherwise it’s about $12 for two rolls from Amazon. You can text me your address if you want me to mail you a roll. Good luck, Debra Brownstein 831-421-1153 Nuanchu 2 Rolls Non-Woven Cover Roll Stretch Tape Non-Woven Adhesive Bandages Breathable Bandage Tape Cohesive Wrap Bandages Protective Stretch Bandage Roll Film (White,2 Inch X 10.94 Yard) https://a.co/d/elRXqif

Statins are heavily debated. In the end, you should consult YOUR doctor. As always. And pick best choice, for you. My college roommate, DVM, died of a heart attack, at age 52. No family history, of premature cardiac death. Was working very hard.

Hi everyone, my name is Diana Patrick. Ive been married for 20 yrs to my husband Matt we have 2 children our daughter Gabby(22), and our son Malichi (we lost at 16 yrs old). I suffered my NAION event in my left eye at 39 yrs old in Nov of 2023. Nearly total OS vision loss (80-85% loss), loss of color vision OS, loss of peripheral vision bilaterally, & developed dry eye syndrome. My Neuro-Ophthalmologist labeled my diagnosis as "atypical" due to my age and lack of risk factors. However, I'm inclined to think the grief from the loss of our son somehow contributed to me experiencing NAION. Neuro-Op ordered many vision tests, 4 MRIs, and lots of blood work. The original referring optometrist initially indicated that I had a "growth" or "mass" behind my eye and put us through a scare for the first couple weeks while waiting for an appt at Barnes Jewish Hospital. Thankfully my neuro-op immediately knew this was incorrect and what he was seeing was inflammation behind my eye. Finally in April of 2024, NO clinically diagnosed my vision loss as NAION "atypical" related event. I am still adjusting to everyday life with monocular vision and some days I don't even notice the loss anymore. Then there are days when my brain just doesn't cooperate and the blurry, dark vision comes back again. Thank you for accepting me into this group and I look forward to learning about everyone's experiences and gaining new wisdom! Thanks again!

At 72, I developed NAION 5.5 months ago, and it has stablized. In my affected eye I see a circle of translucent silvery shimmering circles with a small clear section in the middle. Very weird. I still drive well, play pickleball well, and do Beadweaving . Before I retired, like you, I was a nurse and a diabetes educator (CDE). My neuro-opthalmologist suggested testing for sleep apnea, and I had two overnight tests, and failed them both! Dx. Mild OSA, so the Rx. is for a mouth guard. It takes forever to get into that specialist dentist, and still awaiting an appointment. Has anyone heard of putting tape on your lips at night to prevent snoring? Lake Garren

A very good meta-analysis .. and frankly, given high percentage taking cardiac meds .. those meds are the bigger issue, IMHO .. https://www.nature.com/articles/s41598-024-53196-9 Abstract: "This study aimed to investigate the association between nonarteritic anterior ischemic optic neuropathy (NAION) and Parkinson's disease (PD) using a retrospective, nationwide, population-based cohort in South Korea. "This study utilized data from the Korean National Health Insurance database, including 43,960 NAION patients and 219,800 age- and sex-matched controls. Cox proportional hazards regression models were used to assess the risk of developing PD in the NAION group compared to the control group after adjusting for various confounding factors. "Subgroup analyses were conducted based on sex, age, and comorbidities. "The incidence rate of PD was higher in the NAION group (1.326 per 1000 person-years) than in the control group (0.859 per 1000 person-years). "After adjusting for confounding factors, the risk of developing PD was significantly higher in the NAION group (adjusted hazard ratio [aHR] 1.516, 95% confidence interval [CI] 1.300–1.769). "Subgroup analyses did not reveal a significant difference in the risk of PD development based on sex, age, or comorbidities. "This retrospective, nationwide, population-based cohort study revealed a significant association between NAION and an increased risk of developing PD in a South Korean population. "The incidence rate of PD was observed to be higher in individuals diagnosed with NAION than in age- and sex-matched controls even after adjusting for potential confounding variables, with the risk being approximately 51.6% higher in the NAION group. "Further research is necessary to elucidate the underlying pathophysiological mechanisms linking NAION to PD and to determine whether similar associations exist in other ethnic and geographical populations."

This is a case discussion involving glaucoma .. which is 30,000% bigger than NAION, and also involves optic nerve .. for which WE, can still get Uveitis and Glaucoma - Glaucoma Today Uveitis and Glaucoma - Glaucoma Today A coordinated multispecialty approach to patient care. Many of us face multiple issues .. NAION .. cataracts .. retina health .. glaucoma This explains the challenges involved, and the trade-offs. Have NAION? Retain hole? 50% cataracts? Lot of very challenging issues and questions ..

Hello, I am so happy to have found this group. My episode causing NAION happened less than a month ago. I am 65, in good health and my left eye is still 20/20. Goodness knows the cause; I have sleep apnea but it has been completely managed; my respirologist is very pleased with my unwavering compliance since diagnosis. Elevated cholesterol; well yes, but never high enough to be recommended to be on statins. I am a nurse and diabetes educator so I’m pretty up to date with the healthy lifestyle advice and I try to practice what I preach. My affected eye has, as predicted, gotten worse over the last couple of weeks; I do hope it stabilizes now. A grey mist, and a blank in the very centre of my vision. What a pain. I can’t read even the top line of the Snellen chart, which is alarming. But I must say my first thoughts were of how grateful I was that it wasn’t worse. My brother also developed NAION 9 years ago when he was 59 and he has coped very well, living life to the full and is a great inspiration to me. I also found NAIONLIFE.com inspirational and so kind and helpful. What I liked the best was the reassurance that it is possible to live a fulfilling and happy life with this or any other disability; one just needs to keep on going! I have always been a cautious driver and now I am twice as cautious; parallel parking is done by muscle memory as much as anything else! I liked how the website gives an estimate of when the effects will seem less; 9 -12 months. That seems very reasonable to me. In the meantime, I would like to ask the group, does anyone ever wear an eyepatch over the affected eye or will that make the eye lose function faster? I find sunglasses which grey everything down help, as they “level the playing field” with the affected eye. Anyway, many thanks to the website developer and all contributors. Bring on the optic nerve regeneration science!

https://www.biorxiv.org/content/10.1101/2024.08.12.607648v1.full Diane Keasler Life is the school, love is the lesson.

Hi Everyone, This is such a wonderful group! I so appreciate all of your expertise and support. Does anyone in this group play pickle ball and/or golf? My husband unfortunately has NAION and had always been a great athlete. He has been trying to play pickle ball and as you can imagine, it is TOUGH. If anyone plays either of those or something similar, and has been able to do that after NAION, please send any information you can. If anyone has advice on how to improve, please send that! ANY thoughts or suggestions would be greatly appreciated! Maybe different glasses? Or practicing with a racket and ball against a wall? Thank you all for thinking about this and for this group!! Amanda

Hi Michael, Thank you for constructing this necessary website. Here are some suggestions, use whatever you think might be useful, edit as seems necessary: "The first year is fraught with shock, fear, anxiety, and challenges of all sorts." I would have written: The first reaction to being diagnosed with NAION (which very few people have even heard of) is fraught with shock, fear, anxiety, and challenges of all sorts. This period of emotional toil can last for weeks, months or even longer. Questions arise - for example: Am I going blind? What did I do wrong that caused this condition? (Will my other eye also go bad - (bilateral)? But with time most people's eyes, brain, attitude and coping skills adjust and life goes on. Many report that NAION hasn't changed their lives nearly as much as they feared. --------------------------------------------------- I would add these resources to the website: https://www.youtube.com/watch?v=N_6orLAI8EM https://www.youtube.com/watch?v=S03YdByFHMc https://tinyurl.com/mtd87fwn https://www.youtube.com/watch?v=6PF0i4wdTC4 https://www.youtube.com/watch?v=4h3oxlxU68A https://tinyurl.com/bdfn8jyd https://tinyurl.com/yc3w638t https://www.aao.org/eyenet/article/naion-diagnosis-and-management https://my.clevelandclinic.org/health/diseases/ischemic-optic-neuropathy https://www.youtube.com/watch?v=rcvyqnVeDLk https://en.wikipedia.org/wiki/Sohan_Hayreh (and see attachments - Dr. Sohan Singh Hayreh is considered by many to be one of the world's main experts on NAION): Sohan Singh Hayreh, MD, MS, PhD, DSc, FRCS, FRCOphth (Hon) Professor Emeritus of Ophthalmology & Director Ocular Vascular Clinic Department of Ophthalmology & Visual Sciences College of Medicine, University of Iowa 200 Hawkins Drive Iowa City, Iowa 52242-1091 I would go through past entries to the NAION group - lot's of good material there to be found. Thanks, Marc Gold Newport Beach, California