Hi Terry,
My NAION event happened to my right eye in August 2022--my vision is 20/800. ?I still have peripheral vision but cannot read at all with the right eye.
Having lost depth perception, driving has become difficult-I rarely drive at night; too many close calls. ?It took about 6 months before my brain adjusted and I could easily trim my fingernails. ?Support from the medical community was non-existent--extremely frustrating. ?I'm using supplements to thin my blood, worried that a tendency to clot might be the reason for my condition, but that is just a guess. ?I never had the covid vaccine (but I had covid twice), but it has been shown to increase the risk of retinal vein occlusion--while that is a different condition from NAION, it also leads to blindness and also involves blockage of blood vessels feeding a structure required for sight. ?The people at the retinal specialist office told me if I did have the vaccine, i'd probably be totally blind!
Friends and family always ask if i've had any improvement, but the answer is no. ?It's been a difficult, lonely, frustrating road--my faith in God is what keeps me going. ?I've learned so much more from this message board than from any other source, including my specialists-at least i'm not alone. ?I keep all of you in my prayers-God bless and reach out when you need too-there are many great and brave people on this site who support you 100%.
Paul
The two hardest tests on the spiritual road are the patience to wait for the right moment and the courage not to be disappointed with what we encounter----Paulo Coelho?
I would be true, for there are those who trust me: I would be pure, for there are those who care; I would be strong, for there is much to suffer; I would be brave, for there is much to dare-Howard Walter
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On 03/09/2025 8:04 AM EDT Terry Berelowitz via groups.io <craigberelowitz@...> wrote:
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Hullo All
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I¡¯m writing from Cape Town , South Africa. I lost most of the useful vision in my right eye from NAION July 22.?
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First misdiagnosed, but after careful choice I got a speedy, 3 minute diagnosis from my second ophthalmologist.?
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She, and many others talked about a gradual acceptance and accommodation. In a fashion this has come about.?
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But, I continue weekly, at times daily to be very aware of my NAION.? The practical issues whilst driving. Suddenly finding someone entered the room and I never saw them. Not realising some that was sitting alongside me, actually had left the couch. Every now and then checking that in fact there was improvement, when there definitely wasn¡¯t. Imagining that the good eye was showing subtle signs. Scared shit less that one day the right eye would be inflicted ,periodically imagining not being able to see at all. Frustrated that others can¡¯t understand what it¡¯s like to have suddenly lost vision. After all, I look healthy.?
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I would love to hear the groups sentiments and experiences.?
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Many thanks?
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Terry BERELOWITZ?
Reminder: ALL pharms should be treated with caution ..
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Hullo All
I¡¯m writing from Cape Town , South Africa. I lost most of the useful vision in my right eye from NAION July 22.?
First misdiagnosed, but after careful choice I got a speedy, 3 minute diagnosis from my second ophthalmologist.?
She, and many others talked about a gradual acceptance and accommodation. In a fashion this has come about.?
But, I continue weekly, at times daily to be very aware of my NAION.? The practical issues whilst driving. Suddenly finding someone entered the room and I never saw them. Not realising some that was sitting alongside me, actually had left the couch. Every now and then checking that in fact there was improvement, when there definitely wasn¡¯t. Imagining that the good eye was showing subtle signs. Scared shit less that one day the right eye would be inflicted ,periodically imagining not being able to see at all. Frustrated that others can¡¯t understand what it¡¯s like to have suddenly lost vision. After all, I look healthy.?
I would love to hear the groups sentiments and experiences.?
Many thanks?
Terry BERELOWITZ?
Reminder: ALL pharms should be treated with caution ..
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Reminder: ALL pharms should be treated with caution ..
https://nypost.com/2025/03/08/health/people-going-blind-after-using-weight-loss-drugs-like-ozempic-and-mounjaro?utm_source=nypost&utm_campaign=android_nyp&utm_medium=social
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Re: NAION or actually a case of ocular shingles?
Anecdotally, a couple of years before NAION I had shingles, upper left torso, in July. In September I developed a searing pain in my left jaw which was diagnosed as trigeminal neuralgia. ?TN and shingles are caused by the same virus, varicella zoster. ?Fortunately, during the first couple of weeks of excruciating jaw pain a neurologist prescribed an antiviral (same as used with shingles) and after 5 days the pain ceased and hasn¡¯t returned. I wouldn¡¯t be the least surprised if there is a viral component for my NAION and maybe for others as well.?
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NAION or actually a case of ocular shingles?
I had my "attack" in early August of 2022-within a month my vision decreased to 20/800 and has remained so until now. ?During the first 6 weeks of this episode, the pain was so bad I could not put my head on the pillow-I thought I had a severe ethmoid sinus infection that caused inflammation near the optic nerve, but I could not get anyone to listen. ?Finally, an MRI in November did confirm that I did have some "congestion" in the ethmoid sinus region, but the doctors didn't think it was significant.
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In February 2024, I had an ocular shingles attack on the same side-the pain was unbearable despite starting anti-viral therapy within 3 days of the outbreak. ?To this day I have numbness in the bridge of my nose, right eyebrow, and right eyelid (my right eye had the NAION attack). ?I still must monitor my diet to avoid foods high in arginine and I take 3 grams of lysine a day to reduce the risk of another attack. ?I cannot tolerate further anti-viral therapy due to a sensitivity that leads to kidney inflammation.
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In my research on my condition, I have discovered that ocular shingles does not always present with a rash-my neuro-ophthalmologist report on my condition said he thought I had a small disk to cup ratio but still wasn't 100% sure I had NAION. ?Also, ocular shingles has a very high rate of reoccurrence within 5 years and taking the shingles vaccine increases that risk. ?Could this have been a shingles attack all along?
Paul
The two hardest tests on the spiritual road are the patience to wait for the right moment and the courage not to be disappointed with what we encounter----Paulo Coelho?
I would be true, for there are those who trust me: I would be pure, for there are those who care; I would be strong, for there is much to suffer; I would be brave, for there is much to dare-Howard Walter
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On 03/08/2025 8:29 AM EST Russ Poter via groups.io <russpoter@...> wrote:
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1/ my case: during mega-heavy workload, arguing with feds (ultimately involving Mr. Obama's office), in 2015 .. NAION attack, LEFT eye, 30% vision loss. Can still drive, if carefully.
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2/ after a search, found great N.O. at top medical school, USAF during Vietnam (treated P.O.W. cases), published authority.
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ON CATARACT SURGERY .. N.O. advised, as much as possible, wait until ABSOLUTE last minute. Much research about, said surgery, involved with additional NAION attacks.
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*** IN ANY EVENT .. IN ANY MEDICAL TREATMENT .. ADVISE THAT NAION IS PRESENT.?
? ? ? ? ? KEEP REPEATING -- NAION IS PRESENT.
?
? ? ? ? ? MANY PROVIDERS HAVE A DIFFICULT TIME, LISTENING CAREFULLY.?
? ? ? ? ? PUT IT WRITING, COPY TO THEIR LEGAL COUNSEL.
?
ON RETINAL TREATMENT .. very small hole in RIGHT eye, just discovered. Now .. WAIT & SEE. Medical school clinic, very aware, of stakes involved.
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To conclude: standand order .. step by step, day by day. We're not going to live forever.
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On Wednesday, March 5, 2025 at 11:49:18 AM EST, James Chevalley via groups.io <jimchevalley@...> wrote:
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There is so little known about NAION.? And the info we gave seems full of contradictions.? Like no anesthesia, or no flying, scuba diving. Even some face lotions used for Rosecia suggest a problem . Novacaine at the dentist. The list seems endless. With so few patients there is no money ear marked for research. I wish there were more clear answers . I also think there should be a screening of the optic nerve during an eye exam that would give people a heads up if they were prone to this problem.? I'm 72 and have been to the eye doctor every year for an eye exam since I was 10 years old. Even after a retina tear on both eyes and a vistrectomy I was NEVER told about NAION till it happened 9 days after I had the 2nd vistrectomy.? ??? All the tests and MRIs after the fact they claim my BP dropped too far .? ?? Very gut wrenching..
On Tue, Mar 4, 2025, 3:55 PM Pamela Chadick via <apchadick88= [email protected]> wrote:
Exactly! The most difficult thing is not knowing, or being able to prevent. I¡¯ve been hypervigilant about protecting my left eye over the years and have been told that the chances of it occurring in that eye were slim. At this point, I¡¯m most interested in finding out what people are doing to better the situation. Glasses, tools, computer screens for easier reading, etc. I¡¯ve been very fortunate for 20 year in that my left eye was so strong. Although, I¡¯m not sure where everything will settle, I can see pretty well straight ahead with my left eye, Lost the lower 1/3 and peripheral.
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Pamela, so sorry to learn your left eye now, after 20 years!, has had a NAION attack.
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I'm wondering, though you don't have any of the typical risk factors other than the biggie, small cup to disc ratio, if prior to this recent event, you had something that significantly either raised your BP such as significant pain or something that could have caused a drop in blood pressure such as dehydration?? It is so hard not knowing what can be a trigger.?
?
Diane Keasler
?
Hello. I am no longer using this email. Please update your contacts and use DLKeasler@...
?
919-968-0099
?
THANK YOU!!!
Life is the school, love is the lesson.
?
?
On Tuesday, March 4, 2025 at 02:24:18 PM EST, Pamela Chadick via <apchadick88= [email protected]> wrote:
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Hello,
I also have NAION in both eyes. The first time when I was 41in my right eye and most recently 3 weeks ago in my left eye. I'm now 61. I also have small cup to disc ration in both eyes. No diabetes, no blood pressure problems, really none of the risk factors that others sometimes have. I saw a dr. in Mobile, Al who specializes in optic nerve issues and she did something interesting that she said she's had good success with . She prescribed a solu medrol that I mixed with water and drank every morning for a few days and then I've been taken 50 mg of prednisone for the past 11 days. I'll start tapering off tomorrow. My doctor 20 years ago, who has passed, prescribed the IV steroids right away. I don't have risk factors so the steroids have been okay, and, although I've been told that there's no proof it helps reduce the swelling in the optic nerve, it helps me to know that we're doing something.
?
?
?
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ON CATARACTS & RETINA HOLES
1/ my case: during mega-heavy workload, arguing with feds (ultimately involving Mr. Obama's office), in 2015 .. NAION attack, LEFT eye, 30% vision loss. Can still drive, if carefully.
2/ after a search, found great N.O. at top medical school, USAF during Vietnam (treated P.O.W. cases), published authority.
ON CATARACT SURGERY .. N.O. advised, as much as possible, wait until ABSOLUTE last minute. Much research about, said surgery, involved with additional NAION attacks.
*** IN ANY EVENT .. IN ANY MEDICAL TREATMENT .. ADVISE THAT NAION IS PRESENT.? ? ? ? ? ? KEEP REPEATING -- NAION IS PRESENT.
? ? ? ? ? MANY PROVIDERS HAVE A DIFFICULT TIME, LISTENING CAREFULLY.? ? ? ? ? ? PUT IT WRITING, COPY TO THEIR LEGAL COUNSEL.
ON RETINAL TREATMENT .. very small hole in RIGHT eye, just discovered. Now .. WAIT & SEE. Medical school clinic, very aware, of stakes involved.
To conclude: standand order .. step by step, day by day. We're not going to live forever.
On Wednesday, March 5, 2025 at 11:49:18 AM EST, James Chevalley via groups.io <jimchevalley@...> wrote:
There is so little known about NAION.? And the info we gave seems full of contradictions.? Like no anesthesia, or no flying, scuba diving. Even some face lotions used for Rosecia suggest a problem . Novacaine at the dentist. The list seems endless. With so few patients there is no money ear marked for research. I wish there were more clear answers . I also think there should be a screening of the optic nerve during an eye exam that would give people a heads up if they were prone to this problem.? I'm 72 and have been to the eye doctor every year for an eye exam since I was 10 years old. Even after a retina tear on both eyes and a vistrectomy I was NEVER told about NAION till it happened 9 days after I had the 2nd vistrectomy.? ??? All the tests and MRIs after the fact they claim my BP dropped too far .? ?? Very gut wrenching..
On Tue, Mar 4, 2025, 3:55 PM Pamela Chadick via <apchadick88= [email protected]> wrote: Exactly! The most difficult thing is not knowing, or being able to prevent. I¡¯ve been hypervigilant about protecting my left eye over the years and have been told that the chances of it occurring in that eye were slim. At this point, I¡¯m most interested in finding out what people are doing to better the situation. Glasses, tools, computer screens for easier reading, etc. I¡¯ve been very fortunate for 20 year in that my left eye was so strong. Although, I¡¯m not sure where everything will settle, I can see pretty well straight ahead with my left eye, Lost the lower 1/3 and peripheral. ? Pamela, so sorry to learn your left eye now, after 20 years!, has had a NAION attack.
I'm wondering, though you don't have any of the typical risk factors other than the biggie, small cup to disc ratio, if prior to this recent event, you had something that significantly either raised your BP such as significant pain or something that could have caused a drop in blood pressure such as dehydration?? It is so hard not knowing what can be a trigger.?
Diane Keasler
Hello. I am no longer using this email. Please update your contacts and use DLKeasler@...
919-968-0099
THANK YOU!!! Life is the school, love is the lesson.
On Tuesday, March 4, 2025 at 02:24:18 PM EST, Pamela Chadick via <apchadick88= [email protected]> wrote:
Hello,
I also have NAION in both eyes. The first time when I was 41in my right eye and most recently 3 weeks ago in my left eye. I'm now 61. I also have small cup to disc ration in both eyes. No diabetes, no blood pressure problems, really none of the risk factors that others sometimes have. I saw a dr. in Mobile, Al who specializes in optic nerve issues and she did something interesting that she said she's had good success with . She prescribed a solu medrol that I mixed with water and drank every morning for a few days and then I've been taken 50 mg of prednisone for the past 11 days. I'll start tapering off tomorrow. My doctor 20 years ago, who has passed, prescribed the IV steroids right away. I don't have risk factors so the steroids have been okay, and, although I've been told that there's no proof it helps reduce the swelling in the optic nerve, it helps me to know that we're doing something.
?
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James, that makes three of us being afflicted within days of a vitrectomy or similar procedure.?
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Mine happened 9;Days after a vistrectomy. I believe it was due to the surgery but Georgia Retina never mentioned anything about me being at risk. In fact I never heard the word NAION even mentioned.
Also see ? a platelet (involved in clotting) associated factor. There actually may be enough available data to know if there is an association between factor V Leiden and NAION. A few papers online hypothesize a connection.? It may be worth talking with your doc to consider whether there might be a useful med for reducing risk of a second NAION specifically in people with Factor V Leiden. ? ? Seems like a lot of things can load the dice for getting NAION: genetics, low BP, hypoxia, certain meds, blood loss, dehydration, and of course disc size.? I recently found out I have a rare congenital malformation of my carotid arteries, which could have contributed to mine. ? Adam ? ? One of the conditions I always wondered about was Factor V Leiden ¨C which I have. It¡®s a mutation of one of the blood clotting agents and can (but not always) cause abnormal blood clots. ? ? ? Hello the way I understand?it is that hypoxia and hypoglycemia?caused by low blood circulation in the eye causes the optic nerve to first swell and then become necrotic?due to apoptosis. This can occur due to low blood pressure or other reasons nobody could understand. I saw many doctors and nobody understands it.? I also had solu medrol 1 g per day x 3 days?infused cortisone with no effect.? My right eye has only 1/3 vision. I am a scientist and my job involves travel and driving. I am 56 years old and it was a total surprise as I am?fit and didn¡¯t have high bp nor did I have high cholesterol or triglycerides. Remains a mystery and I am scared of the other eye as well Very difficult condition and I empathize with all of you.? ? On Wednesday, March 5, 2025, 9:10 PM, Diane Keasler via <dlkeasler@...> wrote: Is this right - changes in blood pressure can cause optic nerve to swell? Is this also right, we can have a swollen optic nerve with no vision loss? But if we have a swollen optic nerve and then a significant enough change in blood pressure, that could be the trigger for the vision loss? Hello. I am no longer using this email. Please update your contacts and use DLKeasler@...
Life is the school, love is the lesson.
On Wednesday, March 5, 2025 at 01:16:37 PM EST, James Chevalley via <jimchevalley@...> wrote: And I'll bet nobody mentioned NAION as a risk factor... ? James, my experience was similar.? I had a retinal repair in August 2022 and my eye was filled with a silicon solution for 90 days to try to fend off scar tissue.? After 90 days it was back to surgery for flushing and filling the eye with clear solution. Initially I could see quite well. My one day post op appointment had the eye at 20/30 although there were some floaty kind of things going on which was ¡°normal.¡± ?The following week was similar, decent vision but the floaty things which I was told and I surmised was basically left over silicon continued.? I went in for the one week post op assessment and my vision was 20/300.? That said, since that time I¡¯ve had one 45 minute surgery with anesthesia and flown twice overseas. ? I have knee replacement surgery coming up in July.? Honestly, in my case. I¡¯d be willing to bet my NAION is directly related to swelling of the optical nerves due to the surgery.? None of the other ¡°reasons¡± were relevant for my case. ?
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Also see ? a platelet (involved in clotting) associated factor. There actually may be enough available data to know if there is an association between factor V Leiden and NAION. A few papers online hypothesize a connection.? It may be worth talking with your doc to consider whether there might be a useful med for reducing risk of a second NAION specifically in people with Factor V Leiden. ? ? Seems like a lot of things can load the dice for getting NAION: genetics, low BP, hypoxia, certain meds, blood loss, dehydration, and of course disc size. ?I recently found out I have a rare congenital malformation of my carotid arteries, which could have contributed to mine. ? Adam ?
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From: [email protected] <[email protected]> On Behalf Of David Cattle via groups.io
Sent: Wednesday, March 05, 2025 5:33 PM
To: [email protected]
Subject: Re: [NAION] Steroids? One of the conditions I always wondered about was Factor V Leiden ¨C which I have. It¡®s a mutation of one of the blood clotting agents and can (but not always) cause abnormal blood clots. ? ? ? Hello the way I understand?it is that hypoxia and hypoglycemia?caused by low blood circulation in the eye causes the optic nerve to first swell and then become necrotic?due to apoptosis. This can occur due to low blood pressure or other reasons nobody could understand. I saw many doctors and nobody understands it.? I also had solu medrol 1 g per day x 3 days?infused cortisone with no effect.? My right eye has only 1/3 vision. I am a scientist and my job involves travel and driving. I am 56 years old and it was a total surprise as I am?fit and didn¡¯t have high bp nor did I have high cholesterol or triglycerides. Remains a mystery and I am scared of the other eye as well Very difficult condition and I empathize with all of you.? ? On Wednesday, March 5, 2025, 9:10 PM, Diane Keasler via groups.io <dlkeasler@...> wrote: Is this right - changes in blood pressure can cause optic nerve to swell? Is this also right, we can have a swollen optic nerve with no vision loss? But if we have a swollen optic nerve and then a significant enough change in blood pressure, that could be the trigger for the vision loss? Hello. I am no longer using this email. Please update your contacts and use DLKeasler@...
Life is the school, love is the lesson.
On Wednesday, March 5, 2025 at 01:16:37 PM EST, James Chevalley via groups.io <jimchevalley@...> wrote: And I'll bet nobody mentioned NAION as a risk factor... ? James, my experience was similar.? I had a retinal repair in August 2022 and my eye was filled with a silicon solution for 90 days to try to fend off scar tissue.? After 90 days it was back to surgery for flushing and filling the eye with clear solution. Initially I could see quite well. My one day post op appointment had the eye at 20/30 although there were some floaty kind of things going on which was ¡°normal.¡± ?The following week was similar, decent vision but the floaty things which I was told and I surmised was basically left over silicon continued.? I went in for the one week post op assessment and my vision was 20/300.? That said, since that time I¡¯ve had one 45 minute surgery with anesthesia and flown twice overseas. ? I have knee replacement surgery coming up in July.? Honestly, in my case. I¡¯d be willing to bet my NAION is directly related to swelling of the optical nerves due to the surgery.? None of the other ¡°reasons¡± were relevant for my case. ?
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That is seen in contrast MRI of orbit and brain.? I did that and showed nothing? However this is normally standard of care. Not sure if you did that procedure. Also get checked for propensity for clots via blood tests at hematologist. That also showed nothing for me. Wish all of you best of luck.?
On Thursday, March 6, 2025, 12:33 AM, David Cattle via groups.io <djacattle@...> wrote: One of the conditions I always wondered about was Factor V Leiden ¨C which I have. It¡®s a mutation of one of the blood clotting agents and can (but not always) cause abnormal blood clots. ? ? ? Hello the way I understand?it is that hypoxia and hypoglycemia?caused by low blood circulation in the eye causes the optic nerve to first swell and then become necrotic?due to apoptosis. This can occur due to low blood pressure or other reasons nobody could understand. I saw many doctors and nobody understands it.? I also had solu medrol 1 g per day x 3 days?infused cortisone with no effect.? My right eye has only 1/3 vision. I am a scientist and my job involves travel and driving. I am 56 years old and it was a total surprise as I am?fit and didn¡¯t have high bp nor did I have high cholesterol or triglycerides. Remains a mystery and I am scared of the other eye as well. Very difficult condition and I empathize with all of you.? ? On Wednesday, March 5, 2025, 9:10 PM, Diane Keasler via groups.io <dlkeasler@...> wrote: Is this right - changes in blood pressure can cause optic nerve to swell? Is this also right, we can have a swollen optic nerve with no vision loss? But if we have a swollen optic nerve and then a significant enough change in blood pressure, that could be the trigger for the vision loss? Hello. I am no longer using this email. Please update your contacts and use DLKeasler@...
Life is the school, love is the lesson.
On Wednesday, March 5, 2025 at 01:16:37 PM EST, James Chevalley via groups.io <jimchevalley@...> wrote: And I'll bet nobody mentioned NAION as a risk factor... ? James, my experience was similar.? I had a retinal repair in August 2022 and my eye was filled with a silicon solution for 90 days to try to fend off scar tissue.? After 90 days it was back to surgery for flushing and filling the eye with clear solution. Initially I could see quite well. My one day post op appointment had the eye at 20/30 although there were some floaty kind of things going on which was ¡°normal.¡± ?The following week was similar, decent vision but the floaty things which I was told and I surmised was basically left over silicon continued.? I went in for the one week post op assessment and my vision was 20/300.? That said, since that time I¡¯ve had one 45 minute surgery with anesthesia and flown twice overseas. ? I have knee replacement surgery coming up in July.? Honestly, in my case. I¡¯d be willing to bet my NAION is directly related to swelling of the optical nerves due to the surgery.? None of the other ¡°reasons¡± were relevant for my case. ?
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One of the conditions I always wondered about was Factor V Leiden ¨C which I have. It¡®s a mutation of one of the blood clotting agents and can (but not always) cause abnormal blood clots. ? ?
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From: [email protected] <[email protected]> On Behalf Of iphigenia koumenis via groups.io
Sent: Wednesday, March 5, 2025 1:44 PM
To: [email protected]; [email protected]
Subject: Re: [NAION] Steroids? Hello the way I understand?it is that hypoxia and hypoglycemia?caused by low blood circulation in the eye causes the optic nerve to first swell and then become necrotic?due to apoptosis. This can occur due to low blood pressure or other reasons nobody could understand. I saw many doctors and nobody understands it.? I also had solu medrol 1 g per day x 3 days?infused cortisone with no effect.? My right eye has only 1/3 vision. I am a scientist and my job involves travel and driving. I am 56 years old and it was a total surprise as I am?fit and didn¡¯t have high bp nor did I have high cholesterol or triglycerides. Remains a mystery and I am scared of the other eye as well. Very difficult condition and I empathize with all of you.? ? On Wednesday, March 5, 2025, 9:10 PM, Diane Keasler via groups.io <dlkeasler@...> wrote: Is this right - changes in blood pressure can cause optic nerve to swell? Is this also right, we can have a swollen optic nerve with no vision loss? But if we have a swollen optic nerve and then a significant enough change in blood pressure, that could be the trigger for the vision loss? Hello. I am no longer using this email. Please update your contacts and use DLKeasler@...
Life is the school, love is the lesson.
On Wednesday, March 5, 2025 at 01:16:37 PM EST, James Chevalley via groups.io <jimchevalley@...> wrote: And I'll bet nobody mentioned NAION as a risk factor... ? James, my experience was similar.? I had a retinal repair in August 2022 and my eye was filled with a silicon solution for 90 days to try to fend off scar tissue.? After 90 days it was back to surgery for flushing and filling the eye with clear solution. Initially I could see quite well. My one day post op appointment had the eye at 20/30 although there were some floaty kind of things going on which was ¡°normal.¡± ?The following week was similar, decent vision but the floaty things which I was told and I surmised was basically left over silicon continued.? I went in for the one week post op assessment and my vision was 20/300.? That said, since that time I¡¯ve had one 45 minute surgery with anesthesia and flown twice overseas. ? I have knee replacement surgery coming up in July.? Honestly, in my case. I¡¯d be willing to bet my NAION is directly related to swelling of the optical nerves due to the surgery.? None of the other ¡°reasons¡± were relevant for my case. ?
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Hello the way I understand?it is that hypoxia and hypoglycemia?caused by low blood circulation in the eye causes the optic nerve to first swell and then become necrotic ?due to apoptosis. This can occur due to low blood pressure or other reasons nobody could understand. I saw many doctors and nobody understands it.?I also had solu medrol 1 g per day x 3 days?infused cortisone with no effect.? My right eye has only 1/3 vision. I am a scientist and my job involves travel and driving. I am 56 years old and it was a total surprise as I am?fit and didn¡¯t have high bp nor did I have high cholesterol or triglycerides. Remains a mystery and I am scared of the other eye as well. Very difficult condition and I empathize with all of you.? Regards
On Wednesday, March 5, 2025, 9:10 PM, Diane Keasler via groups.io <dlkeasler@...> wrote: Is this right - changes in blood pressure can cause optic nerve to swell?
Is this also right, we can have a swollen optic nerve with no vision loss?
But if we have a swollen optic nerve and then a significant enough change in blood pressure, that could be the trigger for the vision loss?
Diane Keasler
Hello. I am no longer using this email. Please update your contacts and use DLKeasler@...
DLKeasler@... 505 Chatham Drive Chapel Hill, NC 27516 919-968-0099
THANK YOU!!! Life is the school, love is the lesson.
On Wednesday, March 5, 2025 at 01:16:37 PM EST, James Chevalley via groups.io <jimchevalley@...> wrote:
And I'll bet nobody mentioned NAION as a risk factor...
James, my experience was similar.? I had a retinal repair in August 2022 and my eye was filled with a silicon solution for 90 days to try to fend off scar tissue.? After 90 days it was back to surgery for flushing and filling the eye with clear solution. Initially I could see quite well. My one day post op appointment had the eye at 20/30 although there were some floaty kind of things going on which was ¡°normal.¡± ?The following week was similar, decent vision but the floaty things which I was told and I surmised was basically left over silicon continued.? I went in for the one week post op assessment and my vision was 20/300.? That said, since that time I¡¯ve had one 45 minute surgery with anesthesia and flown twice overseas. ? I have knee replacement surgery coming up in July.? Honestly, in my case. I¡¯d be willing to bet my NAION is directly related to swelling of the optical nerves due to the surgery.? None of the other ¡°reasons¡± were relevant for my case. ?
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Is this right - changes in blood pressure can cause optic nerve to swell?
Is this also right, we can have a swollen optic nerve with no vision loss?
But if we have a swollen optic nerve and then a significant enough change in blood pressure, that could be the trigger for the vision loss?
Diane Keasler
Hello. I am no longer using this email. Please update your contacts and use DLKeasler@...
DLKeasler@... 505 Chatham Drive Chapel Hill, NC 27516 919-968-0099
THANK YOU!!! Life is the school, love is the lesson.
On Wednesday, March 5, 2025 at 01:16:37 PM EST, James Chevalley via groups.io <jimchevalley@...> wrote:
And I'll bet nobody mentioned NAION as a risk factor...
James, my experience was similar.? I had a retinal repair in August 2022 and my eye was filled with a silicon solution for 90 days to try to fend off scar tissue.? After 90 days it was back to surgery for flushing and filling the eye with clear solution. Initially I could see quite well. My one day post op appointment had the eye at 20/30 although there were some floaty kind of things going on which was ¡°normal.¡± ?The following week was similar, decent vision but the floaty things which I was told and I surmised was basically left over silicon continued.? I went in for the one week post op assessment and my vision was 20/300.? That said, since that time I¡¯ve had one 45 minute surgery with anesthesia and flown twice overseas. ? I have knee replacement surgery coming up in July.? Honestly, in my case. I¡¯d be willing to bet my NAION is directly related to swelling of the optical nerves due to the surgery.? None of the other ¡°reasons¡± were relevant for my case. ?
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And I'll bet nobody mentioned NAION as a risk factor...
James, my experience was similar.? I had a retinal repair in August 2022 and my eye was filled with a silicon solution for 90 days to try to fend off scar tissue.? After 90 days it was back to surgery for flushing and filling the eye with clear solution. Initially I could see quite well. My one day post op appointment had the eye at 20/30 although there were some floaty kind of things going on which was ¡°normal.¡± ?The following week was similar, decent vision but the floaty things which I was told and I surmised was basically left over silicon continued.? I went in for the one week post op assessment and my vision was 20/300.? That said, since that time I¡¯ve had one 45 minute surgery with anesthesia and flown twice overseas. ? I have knee replacement surgery coming up in July.? Honestly, in my case. I¡¯d be willing to bet my NAION is directly related to swelling of the optical nerves due to the surgery.? None of the other ¡°reasons¡± were relevant for my case. ?
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James, my experience was similar. ?I had a retinal repair in August 2022 and my eye was filled with a silicon solution for 90 days to try to fend off scar tissue. ?After 90 days it was back to surgery for flushing and filling the eye with clear solution. Initially I could see quite well. My one day post op appointment had the eye at 20/30 although there were some floaty kind of things going on which was ¡°normal.¡± ?The following week was similar, decent vision but the floaty things which I was told and I surmised was basically left over silicon continued. ?I went in for the one week post op assessment and my vision was 20/300. ?That said, since that time I¡¯ve had one 45 minute surgery with anesthesia and flown twice overseas. ? I have knee replacement surgery coming up in July. ?Honestly, in my case. I¡¯d be willing to bet my NAION is directly related to swelling of the optical nerves due to the surgery. ?None of the other ¡°reasons¡± were relevant for my case. ?
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There is so little known about NAION.? And the info we gave seems full of contradictions.? Like no anesthesia, or no flying, scuba diving. Even some face lotions used for Rosecia suggest a problem . Novacaine at the dentist. The list seems endless. With so few patients there is no money ear marked for research. I wish there were more clear answers . I also think there should be a screening of the optic nerve during an eye exam that would give people a heads up if they were prone to this problem.? I'm 72 and have been to the eye doctor every year for an eye exam since I was 10 years old. Even after a retina tear on both eyes and a vistrectomy I was NEVER told about NAION till it happened 9 days after I had the 2nd vistrectomy.? ??? All the tests and MRIs after the fact they claim my BP dropped too far .? ?? Very gut wrenching..
On Tue, Mar 4, 2025, 3:55 PM Pamela Chadick via <apchadick88= [email protected]> wrote: Exactly! The most difficult thing is not knowing, or being able to prevent. I¡¯ve been hypervigilant about protecting my left eye over the years and have been told that the chances of it occurring in that eye were slim. At this point, I¡¯m most interested in finding out what people are doing to better the situation. Glasses, tools, computer screens for easier reading, etc. I¡¯ve been very fortunate for 20 year in that my left eye was so strong. Although, I¡¯m not sure where everything will settle, I can see pretty well straight ahead with my left eye, Lost the lower 1/3 and peripheral. ? Pamela, so sorry to learn your left eye now, after 20 years!, has had a NAION attack.
I'm wondering, though you don't have any of the typical risk factors other than the biggie, small cup to disc ratio, if prior to this recent event, you had something that significantly either raised your BP such as significant pain or something that could have caused a drop in blood pressure such as dehydration?? It is so hard not knowing what can be a trigger.?
Diane Keasler
Hello. I am no longer using this email. Please update your contacts and use DLKeasler@...
919-968-0099
THANK YOU!!! Life is the school, love is the lesson.
On Tuesday, March 4, 2025 at 02:24:18 PM EST, Pamela Chadick via <apchadick88= [email protected]> wrote:
Hello,
I also have NAION in both eyes. The first time when I was 41in my right eye and most recently 3 weeks ago in my left eye. I'm now 61. I also have small cup to disc ration in both eyes. No diabetes, no blood pressure problems, really none of the risk factors that others sometimes have. I saw a dr. in Mobile, Al who specializes in optic nerve issues and she did something interesting that she said she's had good success with . She prescribed a solu medrol that I mixed with water and drank every morning for a few days and then I've been taken 50 mg of prednisone for the past 11 days. I'll start tapering off tomorrow. My doctor 20 years ago, who has passed, prescribed the IV steroids right away. I don't have risk factors so the steroids have been okay, and, although I've been told that there's no proof it helps reduce the swelling in the optic nerve, it helps me to know that we're doing something.
?
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Exactly! The most difficult thing is not knowing, or being able to prevent. I¡¯ve been hypervigilant about protecting my left eye over the years and have been told that the chances of it occurring in that eye were slim. At this point, I¡¯m most interested in finding out what people are doing to better the situation. Glasses, tools, computer screens for easier reading, etc. I¡¯ve been very fortunate for 20 year in that my left eye was so strong. Although, I¡¯m not sure where everything will settle, I can see pretty well straight ahead with my left eye, Lost the lower 1/3 and peripheral.
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On Mar 4, 2025, at 2:06?PM, Diane Keasler via groups.io <dlkeasler@...> wrote:
? Pamela, so sorry to learn your left eye now, after 20 years!, has had a NAION attack.
I'm wondering, though you don't have any of the typical risk factors other than the biggie, small cup to disc ratio, if prior to this recent event, you had something that significantly either raised your BP such as significant pain or something that could have caused a drop in blood pressure such as dehydration?? It is so hard not knowing what can be a trigger.?
Diane Keasler
Hello. I am no longer using this email. Please update your contacts and use DLKeasler@...
DLKeasler@... 505 Chatham Drive Chapel Hill, NC 27516 919-968-0099
THANK YOU!!! Life is the school, love is the lesson.
On Tuesday, March 4, 2025 at 02:24:18 PM EST, Pamela Chadick via groups.io <apchadick88@...> wrote:
Hello,
I also have NAION in both eyes. The first time when I was 41in my right eye and most recently 3 weeks ago in my left eye. I'm now 61. I also have small cup to disc ration in both eyes. No diabetes, no blood pressure problems, really none of the risk factors that others sometimes have. I saw a dr. in Mobile, Al who specializes in optic nerve issues and she did something interesting that she said she's had good success with . She prescribed a solu medrol that I mixed with water and drank every morning for a few days and then I've been taken 50 mg of prednisone for the past 11 days. I'll start tapering off tomorrow. My doctor 20 years ago, who has passed, prescribed the IV steroids right away. I don't have risk factors so the steroids have been okay, and, although I've been told that there's no proof it helps reduce the swelling in the optic nerve, it helps me to know that we're doing something.
?
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Pamela, so sorry to learn your left eye now, after 20 years!, has had a NAION attack.
I'm wondering, though you don't have any of the typical risk factors other than the biggie, small cup to disc ratio, if prior to this recent event, you had something that significantly either raised your BP such as significant pain or something that could have caused a drop in blood pressure such as dehydration?? It is so hard not knowing what can be a trigger.?
Diane Keasler
Hello. I am no longer using this email. Please update your contacts and use DLKeasler@...
DLKeasler@... 505 Chatham Drive Chapel Hill, NC 27516 919-968-0099
THANK YOU!!! Life is the school, love is the lesson.
On Tuesday, March 4, 2025 at 02:24:18 PM EST, Pamela Chadick via groups.io <apchadick88@...> wrote:
Hello,
I also have NAION in both eyes. The first time when I was 41in my right eye and most recently 3 weeks ago in my left eye. I'm now 61. I also have small cup to disc ration in both eyes. No diabetes, no blood pressure problems, really none of the risk factors that others sometimes have. I saw a dr. in Mobile, Al who specializes in optic nerve issues and she did something interesting that she said she's had good success with . She prescribed a solu medrol that I mixed with water and drank every morning for a few days and then I've been taken 50 mg of prednisone for the past 11 days. I'll start tapering off tomorrow. My doctor 20 years ago, who has passed, prescribed the IV steroids right away. I don't have risk factors so the steroids have been okay, and, although I've been told that there's no proof it helps reduce the swelling in the optic nerve, it helps me to know that we're doing something.
?
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Hello,
I also have NAION in both eyes. The first time when I was 41in my right eye and most recently 3 weeks ago in my left eye. I'm now 61. I also have small cup to disc ration in both eyes. No diabetes, no blood pressure problems, really none of the risk factors that others sometimes have. I saw a dr. in Mobile, Al who specializes in optic nerve issues and she did something interesting that she said she's had good success with . She prescribed a solu medrol that I mixed with water and drank every morning for a few days and then I've been taken 50 mg of prednisone for the past 11 days. I'll start tapering off tomorrow. My doctor 20 years ago, who has passed, prescribed the IV steroids right away. I don't have risk factors so the steroids have been okay, and, although I've been told that there's no proof it helps reduce the swelling in the optic nerve, it helps me to know that we're doing something.
?
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My neuro ophthalmologist said there are three stages:
Gets worse? Improves Stabilize
I am now eight months since initial event (both eyes at same time) and have stabilized. Peripheral vision has improved some in right eye. Left eye was affected more in both vision field and peripheral so little improvement.?
Have adjusted but still hate that vision is not the same as I had prior. Monitoring with PCP and ophthalmologist my health conditions and pray it doesn¡¯t occur again?
On Mon, Feb 17, 2025 at 11:22?AM David Cattle via <djacattle= [email protected]> wrote: Yes, if you have not had a change to the condition after 3 weeks or so typically it¡¯s stabilized. Your brain will learn to manage sight better as time goes by. I lost peripheral vision in my right eye 17 years ago, I noticed it when shaving like a large floater, it became worse as when in a store I tripped over a small child who I never saw in front of me. I found this group far too late, only after I had an attack in my left eye 3 years later leaving it with 10% vision in small patches
Some have reported improvements with steroids ? I had thought NAAION essentially means ¡°blindness,¡± which is true in my case as I would estimate I¡¯ve lost at least 90% of my vision in the affected eye. But from reading here and elsewhere, I gather some people ¡°stabilize¡± at less drastic levels. Is this correct?
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GaryGBrown
ReeRee