hi everyone...i just joined yesterday.? i am very new to NAION...i am a 48 year old female and on dec 4th i discovered that i my vision was very blurry.? it took a few weeks, but the dr diagnosed me w/ NAION in both eyes. which i was told was pretty rare. ? i had 3 days of IV steroids in the hospital and had 2 months of oral steroids. the swelling has gone down some but my eye sight is currently 20/400 in both eyes.? this has absolutely changed my life...i can't drive or work.? ?reading glasses help me see a little better with my left eye.? my right eye only see's blurriness and my refraction test is a zero, so no corrective lens will help.? i'm so scared because the more research i do, the more i realize that i'm probably not going to get any better.? i know this is a waiting game and i just need to be patient but it's so hard.? it also scares me because they are not certain why this happened to me so it i don't know if this will happen again and loose more sight.??
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????????? I think it is rare for bilateral NAION to occur by two events very close in time, but I could be wrong.? Regardless, sorry to welcome to the NAION group.? Your post
is very well composed.? How were you able to do that with such reduced vision?? I am asking because my own poor vision is making it hard to read.
?
Karl L. Wuensch, Professor and ECU Scholar/Teacher, Dept. of Psychology
East Carolina University, Greenville NC? 27858-4353, USA,?
Voice:? 252-328-9420???? Fax:? 252-328-6283
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From: [email protected] < [email protected]> On Behalf Of
bdc via groups.io
Sent: Saturday, February 11, 2023 11:51 AM
To: [email protected]
Subject: [NAION] new member
?
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You don't often get email from
bdc@....
|
|
This email originated from outside ECU.
|
?
hi everyone...i just joined yesterday.? i am very new to NAION...i am a 48 year old female and on dec 4th i discovered that i my vision was very blurry.? it took a few weeks, but the dr diagnosed me w/ NAION in both eyes. which i was told
was pretty rare.
? i had 3 days of IV steroids in the hospital and had 2 months of oral steroids. the swelling has gone down some but my eye sight is currently 20/400 in both eyes.? this has absolutely changed my life...i can't drive or work.? ?reading glasses help me see a
little better with my left eye.? my right eye only see's blurriness and my refraction test is a zero, so no corrective lens will help.? i'm so scared because the more research i do, the more i realize that i'm probably not going to get any better.? i know
this is a waiting game and i just need to be patient but it's so hard.? it also scares me because they are not certain why this happened to me so it i don't know if this will happen again and loose more sight.??
|
good to meet you....i have a 42 inch monitor and the resolution is very high...with the power of a 6 in reading glasses my left eye can see fairly well...but it was my lazy eye that never got used until this happened so it gets "tired" after just a little bit of screen time.? wishing you the best
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Hi Brandi and Karl, I am 50, and I have also been diagnosed with bilateral NAION. And Karl, I live in Greenville, NC! It started in February with a gray curtain in the top half of my left eye. Since my right eye compensated for the vision loss, I was able to function, but I had a sequential event 15 days later. My vision was totally blocked with something similar to light gray wool spread across my entire field of vision. It took about five days for it to set in, and all of a sudden, I couldn’t drive or see my computer screen. In February, my doctors in Eastern NC had never seen this in a patient and were speculating MS, but I was referred to Duke and my NO diagnosed me immediately with a “disc at risk” in my left eye and a normal size disk in my right. I have been on a baby aspirin for the past five years, and I still suffered from two concurrent episodes. While the MRI and lab work show no other risk factors, I am scheduled for a sleep study next week. My doctor would not put me on steroids due to side effect risks and no proof that they work and said that it will be 6-8 weeks for the swelling to go down. Fortunately, I have regained much of my vision in my left eye since 2 weeks after the episode. Similarly, I have begun losing the gray wool in my right eye, but I still cannot see a face or read anything with my right eye. I can tell my brain is working hard with trying to make sense of what I am seeing: flashes of light, intricate patterns in the white black space, kaleidoscope of colors when I close my eyes…As for my stereoscopic vision, I simply cannot see the left side of the faces of my family members at the table. For the first time, I was able to see their entire faces three days ago when I was in touch proximity.
At night, I have awakened in a panic on a few occasions since that is how I first lost my sight with my right eye. It is scary. I feel I am in the prime of my career and, all of the sudden, I am taking FMLA for at least a month. When I see my NO in a few weeks, she said she would schedule me with Duke’s visual occupational therapists to get visual device aids and to learn to deal with my vision loss. She also mentioned that they would work with me to assess my driving ability. That was devastating to hear. However, I am trying to remain positive since I have improving vision. Although, I am suffering from a slight tear that runs diagonally through my left eye, only little spots of vision in my right, and I suffer from contrast, glare, blurry vision, central acuity and visual field loss. Has anyone tried amber glasses? I tried some tinted glasses at the store and they seemed to really help with the glare and contrast. I wear glasses already, so I will need to hold off until a new Rx. My progressive lenses are not very effective at this time. that felt good to unload. I am so happy I found this group. It is so isolating trying to describe what I am experiencing. No one understands. I have even taken photos with my phone and edited them with gray and white streaks to show what my works looks like, but they still have a hard time grasping it.
|
I use the Cacoon twilight and night glasses.? I can still drive
but nighttime is tough.? The glasses help me.? I also use them
sometime to watch TV particularly if the image is dark.? I also
garden with them if the light is low.
On 3/18/2023 8:57 PM, Caroline J wrote:
toggle quoted message
Show quoted text
Hi Brandi and Karl,
I am 50, and I have also been diagnosed with bilateral NAION.
And Karl, I live in Greenville, NC! It started in February with
a gray curtain in the top half of my left eye. Since my right
eye compensated for the vision loss, I was able to function, but
I had a sequential event 15 days later. My vision was totally
blocked with something similar to light gray wool spread across
my entire field of vision. It took about five days for it to set
in, and all of a sudden, I couldn’t drive or see my computer
screen. In February, my doctors in Eastern NC had never seen
this in a patient and were speculating MS, but I was referred to
Duke and my NO diagnosed me immediately with a “disc at risk” in
my left eye and a normal size disk in my right. I have been on a
baby aspirin for the past five years, and I still suffered from
two concurrent episodes. While the MRI and lab work show no
other risk factors, I am scheduled for a sleep study next week.
My doctor would not put me on steroids due to side effect risks
and no proof that they work and said that it will be 6-8 weeks
for the swelling to go down. Fortunately, I have regained much
of my vision in my left eye since 2 weeks after the episode.
Similarly, I have begun losing the gray wool in my right eye,
but I still cannot see a face or read anything with my right
eye. I can tell my brain is working hard with trying to make
sense of what I am seeing: flashes of light, intricate patterns
in the white black space, kaleidoscope of colors when I close my
eyes…As for my stereoscopic vision, I simply cannot see the left
side of the faces of my family members at the table. For the
first time, I was able to see their entire faces three days ago
when I was in touch proximity.
At night, I have awakened in a panic on a few occasions since
that is how I first lost my sight with my right eye. It is
scary. I feel I am in the prime of my career and, all of the
sudden, I am taking FMLA for at least a month. When I see my NO
in a few weeks, she said she would schedule me with Duke’s
visual occupational therapists to get visual device aids and to
learn to deal with my vision loss. She also mentioned that they
would work with me to assess my driving ability. That was
devastating to hear. However, I am trying to remain positive
since I have improving vision. Although, I am suffering from a
slight tear that runs diagonally through my left eye, only
little spots of vision in my right, and I suffer from contrast,
glare, blurry vision, central acuity and visual field loss. Has
anyone tried amber glasses? I tried some tinted glasses at the
store and they seemed to really help with the glare and
contrast. I wear glasses already, so I will need to hold off
until a new Rx. My progressive lenses are not very effective at
this time.
that felt good to unload. I am so happy I found this group. It
is so isolating trying to describe what I am experiencing. No
one understands. I have even taken photos with my phone and
edited them with gray and white streaks to show what my works
looks like, but they still have a hard time grasping it.
|
Hello Caroline, it is SO GOOD you have regained most of the vision in your left eye!? I have seen Dr. Boisvert at Duke.? Is that who you are seeing?
Diane Keasler
Life is the school, love is the lesson.
On Saturday, March 18, 2023 at 11:57:02 PM EDT, Caroline J <gcarolinejoyce@...> wrote:
Hi Brandi and Karl, I am 50, and I have also been diagnosed with bilateral NAION. And Karl, I live in Greenville, NC! It started in February with a gray curtain in the top half of my left eye. Since my right eye compensated for the vision loss, I was able to function, but I had a sequential event 15 days later. My vision was totally blocked with something similar to light gray wool spread across my entire field of vision. It took about five days for it to set in, and all of a sudden, I couldn’t drive or see my computer screen. In February, my doctors in Eastern NC had never seen this in a patient and were speculating MS, but I was referred to Duke and my NO diagnosed me immediately with a “disc at risk” in my left eye and a normal size disk in my right. I have been on a baby aspirin for the past five years, and I still suffered from two concurrent episodes. While the MRI and lab work show no other risk factors, I am scheduled for a sleep study next week. My doctor would not put me on steroids due to side effect risks and no proof that they work and said that it will be 6-8 weeks for the swelling to go down. Fortunately, I have regained much of my vision in my left eye since 2 weeks after the episode. Similarly, I have begun losing the gray wool in my right eye, but I still cannot see a face or read anything with my right eye. I can tell my brain is working hard with trying to make sense of what I am seeing: flashes of light, intricate patterns in the white black space, kaleidoscope of colors when I close my eyes…As for my stereoscopic vision, I simply cannot see the left side of the faces of my family members at the table. For the first time, I was able to see their entire faces three days ago when I was in touch proximity.
At night, I have awakened in a panic on a few occasions since that is how I first lost my sight with my right eye. It is scary. I feel I am in the prime of my career and, all of the sudden, I am taking FMLA for at least a month. When I see my NO in a few weeks, she said she would schedule me with Duke’s visual occupational therapists to get visual device aids and to learn to deal with my vision loss. She also mentioned that they would work with me to assess my driving ability. That was devastating to hear. However, I am trying to remain positive since I have improving vision. Although, I am suffering from a slight tear that runs diagonally through my left eye, only little spots of vision in my right, and I suffer from contrast, glare, blurry vision, central acuity and visual field loss. Has anyone tried amber glasses? I tried some tinted glasses at the store and they seemed to really help with the glare and contrast. I wear glasses already, so I will need to hold off until a new Rx. My progressive lenses are not very effective at this time. that felt good to unload. I am so happy I found this group. It is so isolating trying to describe what I am experiencing. No one understands. I have even taken photos with my phone and edited them with gray and white streaks to show what my works looks like, but they still have a hard time grasping it.
|
Hi sorry to hear about your naion diagnosis I am 42 and was diagnosed at 40 with naion in my right eye. Also no known cause for mine I do not have high blood pressure, cholesterol, or diabetes. The only thing I can think of is I had a severe case of covid that landed me in the hospital on oxygen for almost a week and this happened the week or so before my naion event. My right eye as far as I can tell has not recovered any vision but I am due for a visit with my neuro opthalmologist soon.?
toggle quoted message
Show quoted text
On Sat, Feb 11, 2023, 11:50 AM < bdc@...> wrote: hi everyone...i just joined yesterday.? i am very new to NAION...i am a 48 year old female and on dec 4th i discovered that i my vision was very blurry.? it took a few weeks, but the dr diagnosed me w/ NAION in both eyes. which i was told was pretty rare. ? i had 3 days of IV steroids in the hospital and had 2 months of oral steroids. the swelling has gone down some but my eye sight is currently 20/400 in both eyes.? this has absolutely changed my life...i can't drive or work.? ?reading glasses help me see a little better with my left eye.? my right eye only see's blurriness and my refraction test is a zero, so no corrective lens will help.? i'm so scared because the more research i do, the more i realize that i'm probably not going to get any better.? i know this is a waiting game and i just need to be patient but it's so hard.? it also scares me because they are not certain why this happened to me so it i don't know if this will happen again and loose more sight.??
|
Hi Diane. What a small world! Out of 134 members, already 3 from NC. I see Dr. Yue Li, who is also in Neuro. Did you regain any vision?
While I have much of my vision ?back in the left and can see the eye chart, I continue to suffer from the glare, contrast and blurriness. Does that improve with time for those of you who have had improvements? It has been 40 days in my left, so far.
toggle quoted message
Show quoted text
On Sun, Mar 19, 2023 at 12:16 AM Diane Keasler via <dlkeasler= [email protected]> wrote: Hello Caroline, it is SO GOOD you have regained most of the vision in your left eye!? I have seen Dr. Boisvert at Duke.? Is that who you are seeing?
Diane Keasler
Life is the school, love is the lesson.
Hi Brandi and Karl, I am 50, and I have also been diagnosed with bilateral NAION. And Karl, I live in Greenville, NC! It started in February with a gray curtain in the top half of my left eye. Since my right eye compensated for the vision loss, I was able to function, but I had a sequential event 15 days later. My vision was totally blocked with something similar to light gray wool spread across my entire field of vision. It took about five days for it to set in, and all of a sudden, I couldn’t drive or see my computer screen. In February, my doctors in Eastern NC had never seen this in a patient and were speculating MS, but I was referred to Duke and my NO diagnosed me immediately with a “disc at risk” in my left eye and a normal size disk in my right. I have been on a baby aspirin for the past five years, and I still suffered from two concurrent episodes. While the MRI and lab work show no other risk factors, I am scheduled for a sleep study next week. My doctor would not put me on steroids due to side effect risks and no proof that they work and said that it will be 6-8 weeks for the swelling to go down. Fortunately, I have regained much of my vision in my left eye since 2 weeks after the episode. Similarly, I have begun losing the gray wool in my right eye, but I still cannot see a face or read anything with my right eye. I can tell my brain is working hard with trying to make sense of what I am seeing: flashes of light, intricate patterns in the white black space, kaleidoscope of colors when I close my eyes…As for my stereoscopic vision, I simply cannot see the left side of the faces of my family members at the table. For the first time, I was able to see their entire faces three days ago when I was in touch proximity.
At night, I have awakened in a panic on a few occasions since that is how I first lost my sight with my right eye. It is scary. I feel I am in the prime of my career and, all of the sudden, I am taking FMLA for at least a month. When I see my NO in a few weeks, she said she would schedule me with Duke’s visual occupational therapists to get visual device aids and to learn to deal with my vision loss. She also mentioned that they would work with me to assess my driving ability. That was devastating to hear. However, I am trying to remain positive since I have improving vision. Although, I am suffering from a slight tear that runs diagonally through my left eye, only little spots of vision in my right, and I suffer from contrast, glare, blurry vision, central acuity and visual field loss. Has anyone tried amber glasses? I tried some tinted glasses at the store and they seemed to really help with the glare and contrast. I wear glasses already, so I will need to hold off until a new Rx. My progressive lenses are not very effective at this time. that felt good to unload. I am so happy I found this group. It is so isolating trying to describe what I am experiencing. No one understands. I have even taken photos with my phone and edited them with gray and white streaks to show what my works looks like, but they still have a hard time grasping it.
|
Thanks for sharing. I will look into these. So far, I seem to prefer the night time for seeing easier since I don’t have the glare issues, but it is still all so new and changing at this point. Fluorescent lights are the worst for me.
toggle quoted message
Show quoted text
I use the Cacoon twilight and night glasses.? I can still drive
but nighttime is tough.? The glasses help me.? I also use them
sometime to watch TV particularly if the image is dark.? I also
garden with them if the light is low.
On 3/18/2023 8:57 PM, Caroline J wrote:
Hi Brandi and Karl,
I am 50, and I have also been diagnosed with bilateral NAION.
And Karl, I live in Greenville, NC! It started in February with
a gray curtain in the top half of my left eye. Since my right
eye compensated for the vision loss, I was able to function, but
I had a sequential event 15 days later. My vision was totally
blocked with something similar to light gray wool spread across
my entire field of vision. It took about five days for it to set
in, and all of a sudden, I couldn’t drive or see my computer
screen. In February, my doctors in Eastern NC had never seen
this in a patient and were speculating MS, but I was referred to
Duke and my NO diagnosed me immediately with a “disc at risk” in
my left eye and a normal size disk in my right. I have been on a
baby aspirin for the past five years, and I still suffered from
two concurrent episodes. While the MRI and lab work show no
other risk factors, I am scheduled for a sleep study next week.
My doctor would not put me on steroids due to side effect risks
and no proof that they work and said that it will be 6-8 weeks
for the swelling to go down. Fortunately, I have regained much
of my vision in my left eye since 2 weeks after the episode.
Similarly, I have begun losing the gray wool in my right eye,
but I still cannot see a face or read anything with my right
eye. I can tell my brain is working hard with trying to make
sense of what I am seeing: flashes of light, intricate patterns
in the white black space, kaleidoscope of colors when I close my
eyes…As for my stereoscopic vision, I simply cannot see the left
side of the faces of my family members at the table. For the
first time, I was able to see their entire faces three days ago
when I was in touch proximity.
At night, I have awakened in a panic on a few occasions since
that is how I first lost my sight with my right eye. It is
scary. I feel I am in the prime of my career and, all of the
sudden, I am taking FMLA for at least a month. When I see my NO
in a few weeks, she said she would schedule me with Duke’s
visual occupational therapists to get visual device aids and to
learn to deal with my vision loss. She also mentioned that they
would work with me to assess my driving ability. That was
devastating to hear. However, I am trying to remain positive
since I have improving vision. Although, I am suffering from a
slight tear that runs diagonally through my left eye, only
little spots of vision in my right, and I suffer from contrast,
glare, blurry vision, central acuity and visual field loss. Has
anyone tried amber glasses? I tried some tinted glasses at the
store and they seemed to really help with the glare and
contrast. I wear glasses already, so I will need to hold off
until a new Rx. My progressive lenses are not very effective at
this time.
that felt good to unload. I am so happy I found this group. It
is so isolating trying to describe what I am experiencing. No
one understands. I have even taken photos with my phone and
edited them with gray and white streaks to show what my works
looks like, but they still have a hard time grasping it.
|
Thanks for sharing!? As far as I know, I have never had COVID or have been asymptomatic. NAION effects seem to vary so much among individuals.?
Has anyone had a fellow eye episode between the 1-5 year range? Or a reoccurrence in the same eye?
toggle quoted message
Show quoted text
Hi sorry to hear about your naion diagnosis I am 42 and was diagnosed at 40 with naion in my right eye. Also no known cause for mine I do not have high blood pressure, cholesterol, or diabetes. The only thing I can think of is I had a severe case of covid that landed me in the hospital on oxygen for almost a week and this happened the week or so before my naion event. My right eye as far as I can tell has not recovered any vision but I am due for a visit with my neuro opthalmologist soon.?
On Sat, Feb 11, 2023, 11:50 AM < bdc@...> wrote: hi everyone...i just joined yesterday.? i am very new to NAION...i am a 48 year old female and on dec 4th i discovered that i my vision was very blurry.? it took a few weeks, but the dr diagnosed me w/ NAION in both eyes. which i was told was pretty rare. ? i had 3 days of IV steroids in the hospital and had 2 months of oral steroids. the swelling has gone down some but my eye sight is currently 20/400 in both eyes.? this has absolutely changed my life...i can't drive or work.? ?reading glasses help me see a little better with my left eye.? my right eye only see's blurriness and my refraction test is a zero, so no corrective lens will help.? i'm so scared because the more research i do, the more i realize that i'm probably not going to get any better.? i know this is a waiting game and i just need to be patient but it's so hard.? it also scares me because they are not certain why this happened to me so it i don't know if this will happen again and loose more sight.??
|
????????? Your case seems a lot more complicated than mine.? Aside from a reduction in visual field, the vision in my left eye was OK after my NAION event ?until my cataracts
got bad.? I had cataract surgery on the right eye a month ago and am having it on my left eye later this morning.? That surgery is suspected of triggering NAION events, but I have no choice.? My cataracts were making me pretty much blind.? Wishing you continued
improvement.
?
Karl W.
?
?
toggle quoted message
Show quoted text
From: [email protected] < [email protected]> On Behalf Of
Caroline J via groups.io
Sent: Saturday, March 18, 2023 11:57 PM
To: [email protected]
Subject: Re: [NAION] new member
?
This email originated from outside ECU.
|
?
Hi Brandi and Karl,
I am 50, and I have also been diagnosed with bilateral NAION. And Karl, I live in Greenville, NC! It started in February with a gray curtain in the top half of my left eye. Since my right eye compensated for the vision loss, I was able to function, but I had
a sequential event 15 days later. My vision was totally blocked with something similar to light gray wool spread across my entire field of vision. It took about five days for it to set in, and all of a sudden, I couldn’t drive or see my computer screen. In
February, my doctors in Eastern NC had never seen this in a patient and were speculating MS, but I was referred to Duke and my NO diagnosed me immediately with a “disc at risk” in my left eye and a normal size disk in my right. I have been on a baby aspirin
for the past five years, and I still suffered from two concurrent episodes. While the MRI and lab work show no other risk factors, I am scheduled for a sleep study next week. My doctor would not put me on steroids due to side effect risks and no proof that
they work and said that it will be 6-8 weeks for the swelling to go down. Fortunately, I have regained much of my vision in my left eye since 2 weeks after the episode. Similarly, I have begun losing the gray wool in my right eye, but I still cannot see a
face or read anything with my right eye. I can tell my brain is working hard with trying to make sense of what I am seeing: flashes of light, intricate patterns in the white black space, kaleidoscope of colors when I close my eyes…As for my stereoscopic vision,
I simply cannot see the left side of the faces of my family members at the table. For the first time, I was able to see their entire faces three days ago when I was in touch proximity.
At night, I have awakened in a panic on a few occasions since that is how I first lost my sight with my right eye. It is scary. I feel I am in the prime of my career and, all of the sudden, I am taking FMLA for at least a month. When I see my NO in a few
weeks, she said she would schedule me with Duke’s visual occupational therapists to get visual device aids and to learn to deal with my vision loss. She also mentioned that they would work with me to assess my driving ability. That was devastating to hear.
However, I am trying to remain positive since I have improving vision. Although, I am suffering from a slight tear that runs diagonally through my left eye, only little spots of vision in my right, and I suffer from contrast, glare, blurry vision, central
acuity and visual field loss. Has anyone tried amber glasses? I tried some tinted glasses at the store and they seemed to really help with the glare and contrast. I wear glasses already, so I will need to hold off until a new Rx. My progressive lenses are
not very effective at this time.
that felt good to unload. I am so happy I found this group. It is so isolating trying to describe what I am experiencing. No one understands. I have even taken photos with my phone and edited them with gray and white streaks to show what my works looks like,
but they still have a hard time grasping it.
|
Wishing you all the best, Karlyou
toggle quoted message
Show quoted text
On Mar 20, 2023, at 6:26 AM, Wuensch, Karl Louis <WUENSCHK@...> wrote:
?
????????? Your case seems a lot more complicated than mine.? Aside from a reduction in visual field, the vision in my left eye was OK after my NAION event ?until my cataracts
got bad.? I had cataract surgery on the right eye a month ago and am having it on my left eye later this morning.? That surgery is suspected of triggering NAION events, but I have no choice.? My cataracts were making me pretty much blind.? Wishing you continued
improvement.
?
Karl W.
?
?
?
This email originated from outside ECU.
|
?
Hi Brandi and Karl,
I am 50, and I have also been diagnosed with bilateral NAION. And Karl, I live in Greenville, NC! It started in February with a gray curtain in the top half of my left eye. Since my right eye compensated for the vision loss, I was able to function, but I had
a sequential event 15 days later. My vision was totally blocked with something similar to light gray wool spread across my entire field of vision. It took about five days for it to set in, and all of a sudden, I couldn’t drive or see my computer screen. In
February, my doctors in Eastern NC had never seen this in a patient and were speculating MS, but I was referred to Duke and my NO diagnosed me immediately with a “disc at risk” in my left eye and a normal size disk in my right. I have been on a baby aspirin
for the past five years, and I still suffered from two concurrent episodes. While the MRI and lab work show no other risk factors, I am scheduled for a sleep study next week. My doctor would not put me on steroids due to side effect risks and no proof that
they work and said that it will be 6-8 weeks for the swelling to go down. Fortunately, I have regained much of my vision in my left eye since 2 weeks after the episode. Similarly, I have begun losing the gray wool in my right eye, but I still cannot see a
face or read anything with my right eye. I can tell my brain is working hard with trying to make sense of what I am seeing: flashes of light, intricate patterns in the white black space, kaleidoscope of colors when I close my eyes…As for my stereoscopic vision,
I simply cannot see the left side of the faces of my family members at the table. For the first time, I was able to see their entire faces three days ago when I was in touch proximity.
At night, I have awakened in a panic on a few occasions since that is how I first lost my sight with my right eye. It is scary. I feel I am in the prime of my career and, all of the sudden, I am taking FMLA for at least a month. When I see my NO in a few
weeks, she said she would schedule me with Duke’s visual occupational therapists to get visual device aids and to learn to deal with my vision loss. She also mentioned that they would work with me to assess my driving ability. That was devastating to hear.
However, I am trying to remain positive since I have improving vision. Although, I am suffering from a slight tear that runs diagonally through my left eye, only little spots of vision in my right, and I suffer from contrast, glare, blurry vision, central
acuity and visual field loss. Has anyone tried amber glasses? I tried some tinted glasses at the store and they seemed to really help with the glare and contrast. I wear glasses already, so I will need to hold off until a new Rx. My progressive lenses are
not very effective at this time.
that felt good to unload. I am so happy I found this group. It is so isolating trying to describe what I am experiencing. No one understands. I have even taken photos with my phone and edited them with gray and white streaks to show what my works looks like,
but they still have a hard time grasping it.
|
i hope your cataract surgery is successful without any complications.
toggle quoted message
Show quoted text
On Mon, Mar 20, 2023 at 9:26 AM Wuensch, Karl Louis < WUENSCHK@...> wrote:
????????? Your case seems a lot more complicated than mine.? Aside from a reduction in visual field, the vision in my left eye was OK after my NAION event ?until my cataracts
got bad.? I had cataract surgery on the right eye a month ago and am having it on my left eye later this morning.? That surgery is suspected of triggering NAION events, but I have no choice.? My cataracts were making me pretty much blind.? Wishing you continued
improvement.
?
Karl W.
?
?
?
This email originated from outside ECU.
|
?
Hi Brandi and Karl,
I am 50, and I have also been diagnosed with bilateral NAION. And Karl, I live in Greenville, NC! It started in February with a gray curtain in the top half of my left eye. Since my right eye compensated for the vision loss, I was able to function, but I had
a sequential event 15 days later. My vision was totally blocked with something similar to light gray wool spread across my entire field of vision. It took about five days for it to set in, and all of a sudden, I couldn’t drive or see my computer screen. In
February, my doctors in Eastern NC had never seen this in a patient and were speculating MS, but I was referred to Duke and my NO diagnosed me immediately with a “disc at risk” in my left eye and a normal size disk in my right. I have been on a baby aspirin
for the past five years, and I still suffered from two concurrent episodes. While the MRI and lab work show no other risk factors, I am scheduled for a sleep study next week. My doctor would not put me on steroids due to side effect risks and no proof that
they work and said that it will be 6-8 weeks for the swelling to go down. Fortunately, I have regained much of my vision in my left eye since 2 weeks after the episode. Similarly, I have begun losing the gray wool in my right eye, but I still cannot see a
face or read anything with my right eye. I can tell my brain is working hard with trying to make sense of what I am seeing: flashes of light, intricate patterns in the white black space, kaleidoscope of colors when I close my eyes…As for my stereoscopic vision,
I simply cannot see the left side of the faces of my family members at the table. For the first time, I was able to see their entire faces three days ago when I was in touch proximity.
At night, I have awakened in a panic on a few occasions since that is how I first lost my sight with my right eye. It is scary. I feel I am in the prime of my career and, all of the sudden, I am taking FMLA for at least a month. When I see my NO in a few
weeks, she said she would schedule me with Duke’s visual occupational therapists to get visual device aids and to learn to deal with my vision loss. She also mentioned that they would work with me to assess my driving ability. That was devastating to hear.
However, I am trying to remain positive since I have improving vision. Although, I am suffering from a slight tear that runs diagonally through my left eye, only little spots of vision in my right, and I suffer from contrast, glare, blurry vision, central
acuity and visual field loss. Has anyone tried amber glasses? I tried some tinted glasses at the store and they seemed to really help with the glare and contrast. I wear glasses already, so I will need to hold off until a new Rx. My progressive lenses are
not very effective at this time.
that felt good to unload. I am so happy I found this group. It is so isolating trying to describe what I am experiencing. No one understands. I have even taken photos with my phone and edited them with gray and white streaks to show what my works looks like,
but they still have a hard time grasping it.
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Re the question on amber glasses, yes, I found them very helpful for the first year or so. A company called Cocoons makes good ones. ? ? They look a bit odd but who cares. ? ? Best, ? Adam ?
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From: [email protected] < [email protected]> On Behalf Of Wuensch, Karl Louis Sent: Monday, March 20, 2023 9:26 AM To: [email protected]Subject: Re: [NAION] new member ? ????????? Your case seems a lot more complicated than mine.? Aside from a reduction in visual field, the vision in my left eye was OK after my NAION event ?until my cataracts got bad.? I had cataract surgery on the right eye a month ago and am having it on my left eye later this morning.? That surgery is suspected of triggering NAION events, but I have no choice.? My cataracts were making me pretty much blind.? Wishing you continued improvement. ? Karl W. ? ? ? This email originated from outside ECU. |
? Hi Brandi and Karl, I am 50, and I have also been diagnosed with bilateral NAION. And Karl, I live in Greenville, NC! It started in February with a gray curtain in the top half of my left eye. Since my right eye compensated for the vision loss, I was able to function, but I had a sequential event 15 days later. My vision was totally blocked with something similar to light gray wool spread across my entire field of vision. It took about five days for it to set in, and all of a sudden, I couldn’t drive or see my computer screen. In February, my doctors in Eastern NC had never seen this in a patient and were speculating MS, but I was referred to Duke and my NO diagnosed me immediately with a “disc at risk” in my left eye and a normal size disk in my right. I have been on a baby aspirin for the past five years, and I still suffered from two concurrent episodes While the MRI and lab work show no other risk factors, I am scheduled for a sleep study next week. My doctor would not put me on steroids due to side effect risks and no proof that they work and said that it will be 6-8 weeks for the swelling to go down. Fortunately, I have regained much of my vision in my left eye since 2 weeks after the episode. Similarly, I have begun losing the gray wool in my right eye, but I still cannot see a face or read anything with my right eye. I can tell my brain is working hard with trying to make sense of what I am seeing: flashes of light, intricate patterns in the white black space, kaleidoscope of colors when I close my eyes…As for my stereoscopic vision, I simply cannot see the left side of the faces of my family members at the table. For the first time, I was able to see their entire faces three days ago when I was in touch proximity. At night, I have awakened in a panic on a few occasions since that is how I first lost my sight with my right eye. It is scary. I feel I am in the prime of my career and, all of the sudden, I am taking FMLA for at least a month. When I see my NO in a few weeks, she said she would schedule me with Duke’s visual occupational therapists to get visual device aids and to learn to deal with my vision loss. She also mentioned that they would work with me to assess my driving ability. That was devastating to hear. However, I am trying to remain positive since I have improving vision. Although, I am suffering from a slight tear that runs diagonally through my left eye, only little spots of vision in my right, and I suffer from contrast, glare, blurry vision, central acuity and visual field loss. Has anyone tried amber glasses? I tried some tinted glasses at the store and they seemed to really help with the glare and contrast. I wear glasses already, so I will need to hold off until a new Rx. My progressive lenses are not very effective at this time. that felt good to unload. I am so happy I found this group. It is so isolating trying to describe what I am experiencing. No one understands. I have even taken photos with my phone and edited them with gray and white streaks to show what my works looks like, but they still have a hard time grasping it.
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I've been trying the Cocoons since I first read here about the colored lens. When the light is dim I'm finding the LEMON lens better than the yellow ones.? I wear them over my regular glasses.? The Cocoons are great in that the arms are easily adjustable.?When I'm out in the sun I wear the AMBER lens sunglasses.? ?I try not to go without wearing sunglasses; I've read they are a protection for delaying cataracts.??
Diane Keasler
Life is the school, love is the lesson.
On Monday, March 20, 2023 at 06:55:25 PM EDT, Amy + Adam via groups.io <alf.acs@...> wrote:
Re the question on amber glasses, yes, I found them very helpful for the first year or so. A company called Cocoons makes good ones. ? ? They look a bit odd but who cares. ? ? Best, ? Adam ?
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From: [email protected] < [email protected]> On Behalf Of Wuensch, Karl Louis Sent: Monday, March 20, 2023 9:26 AM To: [email protected]Subject: Re: [NAION] new member ? ????????? Your case seems a lot more complicated than mine.? Aside from a reduction in visual field, the vision in my left eye was OK after my NAION event ?until my cataracts got bad.? I had cataract surgery on the right eye a month ago and am having it on my left eye later this morning.? That surgery is suspected of triggering NAION events, but I have no choice.? My cataracts were making me pretty much blind.? Wishing you continued improvement. ? Karl W. ? ? ? This email originated from outside ECU. |
? Hi Brandi and Karl, I am 50, and I have also been diagnosed with bilateral NAION. And Karl, I live in Greenville, NC! It started in February with a gray curtain in the top half of my left eye. Since my right eye compensated for the vision loss, I was able to function, but I had a sequential event 15 days later. My vision was totally blocked with something similar to light gray wool spread across my entire field of vision. It took about five days for it to set in, and all of a sudden, I couldn’t drive or see my computer screen. In February, my doctors in Eastern NC had never seen this in a patient and were speculating MS, but I was referred to Duke and my NO diagnosed me immediately with a “disc at risk” in my left eye and a normal size disk in my right. I have been on a baby aspirin for the past five years, and I still suffered from two concurrent episodes While the MRI and lab work show no other risk factors, I am scheduled for a sleep study next week. My doctor would not put me on steroids due to side effect risks and no proof that they work and said that it will be 6-8 weeks for the swelling to go down. Fortunately, I have regained much of my vision in my left eye since 2 weeks after the episode. Similarly, I have begun losing the gray wool in my right eye, but I still cannot see a face or read anything with my right eye. I can tell my brain is working hard with trying to make sense of what I am seeing: flashes of light, intricate patterns in the white black space, kaleidoscope of colors when I close my eyes…As for my stereoscopic vision, I simply cannot see the left side of the faces of my family members at the table. For the first time, I was able to see their entire faces three days ago when I was in touch proximity. At night, I have awakened in a panic on a few occasions since that is how I first lost my sight with my right eye. It is scary. I feel I am in the prime of my career and, all of the sudden, I am taking FMLA for at least a month. When I see my NO in a few weeks, she said she would schedule me with Duke’s visual occupational therapists to get visual device aids and to learn to deal with my vision loss. She also mentioned that they would work with me to assess my driving ability. That was devastating to hear. However, I am trying to remain positive since I have improving vision. Although, I am suffering from a slight tear that runs diagonally through my left eye, only little spots of vision in my right, and I suffer from contrast, glare, blurry vision, central acuity and visual field loss. Has anyone tried amber glasses? I tried some tinted glasses at the store and they seemed to really help with the glare and contrast. I wear glasses already, so I will need to hold off until a new Rx. My progressive lenses are not very effective at this time. that felt good to unload. I am so happy I found this group. It is so isolating trying to describe what I am experiencing. No one understands. I have even taken photos with my phone and edited them with gray and white streaks to show what my works looks like, but they still have a hard time grasping it.
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