I had my first occurrence in 2004 at age 54 and became bilateral in 2006 at age 56. ?I have the small cup to disk ratio and possible sleep apnea as the possible causes. I am unable to see the top line on the
vision chart with my left eye, but I still work regularly and drive locally. My sister was also bilateral that happened at age 56. My mother suffered vision loss in her mid-50’s and was diagnosed with a blood clot as the cause and never given any other information.
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Ron Mantlo
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From: [email protected] <[email protected]>
On Behalf Of Joseph W Harrison via groups.io
Sent: Sunday, September 8, 2024 10:21 PM
To: [email protected]
Subject: Re: [NAION] Just joined as well
?
Interesting to read that your brother suffered NAION also.? This is the first time I can recall hearing about it occurring twice within a family, and in a fraternal way especially.? ?Does anyone else in our group have comments on this aspect?
?
On Sun, Sep 8, 2024 at 8:42?PM Carolyn Franke via
<carolynfranke0123=[email protected]> wrote:
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!
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For those who want to learn more about Leiden V here is a good
summary:
Small cup-to-disc ratio, known as Disc at Risk, does seem to be the
most? common factor causing NAION.
My wife has NAION and has disc at risk but her sister does not have
either. So no family connection found here.
Deane
On 9/9/2024 8:58 AM, GaryGBrown via
groups.io wrote:
I looked Leiden V up earlier and have a question for you. ?Do
you also have disk at risk or is your NAION likely to be caused
only by clotting? Likely seems to still be the key term in most
diagnosis.?
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Correction:
20/20 left in the uninjured eye. Go have your daily morning coffee, Eileen
On Monday, September 9, 2024 at 09:43:58 AM EDT, Eibhlin Fionn <ourmissbrooks@...> wrote:
Carolyn,
I bought an eye patch only to be told by my NAION doctor that it is not recommended as it blocks light from entering the injured eye. Mine was a total vision loss in my right eye. It will get more tolerable as time
goes on. 20/20 maintained in my right eye after my 2007 loss.
Eileen
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Carolyn,
I bought an eye patch only to be told by my NAION doctor that it is not recommended as it blocks light from entering the injured eye. Mine was a total vision loss in my right eye. It will get more tolerable as time
goes on. 20/20 maintained in my right eye after my 2007 loss.
Eileen
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I looked Leiden V up earlier and have a question for you. ?Do you also have disk at risk or is your NAION likely to be caused only by clotting? Likely seems to still be the key term in most diagnosis.?
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I guess you completely ignored my post regarding Leiden Factor V Mutation, and the fact it’s hereditary. It’s really dumbfounding that I’ve talked about this for 10 years but it’s been completely ignored. Guess I’m just stupid, my kids on the other hand got themselves tested and know the risks.
On Sun, Sep 8, 2024 at 8:21?PM Joseph W Harrison via <joeharrison1776= [email protected]> wrote:
Interesting to read that your brother suffered NAION also.? This is the first time I can recall hearing about it occurring twice within a family, and in a fraternal way especially.? ?Does anyone else in our group have comments on this aspect?
On Sun, Sep 8, 2024 at 8:42?PM Carolyn Franke via <carolynfranke0123= [email protected]> wrote: 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!
|
Interesting to read that your brother suffered NAION also.? This is the first time I can recall hearing about it occurring twice within a family, and in a fraternal way especially.? ?Does anyone else in our group have comments on this aspect?
On Sun, Sep 8, 2024 at 8:42?PM Carolyn Franke via <carolynfranke0123= [email protected]> wrote: 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!
|
Hi Carolyn. Welcome to the group. I am glad we can support one another ! I am so glad you still have the confidence to drive. I was told not to and I can read the first three lines of the chart. I don’t drive far but only do so to do the local Shopping. I am lucky I have good public transport nearby. Let’s hope there will be scientific developments on optic nerve regeneration! I am also grateful that I can still see even though both my eyes are uncooperative!? On Mon, 9 Sep 2024 at 12:42?PM, Carolyn Franke via <carolynfranke0123= [email protected]> wrote:
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!
|
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!
|
Hi Diana. Thank you for sharing your story. My sincere condolences on the death of your son. How terribly sad. I am also sorry that you have now had to endure this new challenge. I had my attach back in 2020 in my only good functioning eye. I was born with a dragged retina in my left eye which eventually cancelled at least 80 per cent of my vision in that eye and then, my optic nerve was damaged in 2020l. My cause was untreated sleep apnea. My fault. I know I had the condition but didn’t want to use a machine to help me at night. My oxygen levels dropped at night and starved my optic nerve of it. I had to stop work as I was a teacher and I am now being told I cannot drive. I have good days sight wise and I have bad ones too. I can still see, but my central vision is blurry. Seeing detail is also difficult and I struggle to read a book without a magnifier. If you would like a friend to talk to, I am here. I am also on FB. There are days I still cry but we move on?
On Mon, 9 Sep 2024 at 1:54?AM, Diana Patrick via <patrickdiana513= [email protected]> wrote: 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!
?
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Hi Diana, I’m so sorry you are a member of our club but am certainly happy to welcome you. ?I think I may be more fortunate, so far anyway, than most of us here as I have only lost my central vision in OS. ?that being said, nearly three years later now I still check vision in both eyes daily and am more worried about potential future events than my current condition. ?It sounds like you’ve done all the right things. ?I hope there is comfort in numbers for you and will say that the people here are most supportive. ?
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Hi Diana, Its always sad when another sufferer joins this group. All I can say is that your brain will adapt to the change and you will have improved vision after time, how long, is different for each person and condition. Losing a child is unimaginable grief and I’m sure everyone is deeply sympathetic. Difficult to say if that was impactful, loss of sleep, and low blood pressure could be symptomatic. You have one “good” eye, so its important to keep up a healthy lifestyle to ensure you don’t develop thrombosis or pulmonary problems, which as I’m sure you know can lead to a second attack. ? A conditions which can be tested for is Leiden Factor V mutation, which is resistant to inactivation by activated protein C, and can persist in the blood circulation, leading to a mild hypoercolaguable state, not desirable with very fine blood passages. LFV mutation is inherited, I have it and my children have it. ? I was stupid after my first event, not changing my lifestyle and pushing on. Then I had a second attack in the same eye, and finally a third attack in the other eye rendering OS to “bits” of vision and OD to central vision only. Peripheral vision is almost non existent. But I continued to work in construction (management not craft) for ?another 17 years, including driving, racing my sailboat, only slowing down after a full body PE and bilateral knee replacement. ? It’s a bitch, but your life will go on and time is a great healer, but losing a child, devastating. ? David ?
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From: [email protected] <[email protected]> On Behalf Of Diana Patrick via groups.io
Sent: Sunday, September 8, 2024 8:55 AM
To: [email protected]
Subject: [NAION] Just Joined? 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!
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Welcome! Thanks Paula and Diana for your stories. I am building a website that addresses the emotional, psychological and practical issues for us NAION affected.? Would appreciate feedback back and contributions of stories and such.? Thank you! Best always.?
Michael Brown 707-333-3024
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On Sep 8, 2024, at 9:14?AM, Paula Mcglasson via groups.io <paulam@...> wrote:
? Dear Diana, ?? I experienced my only episode of NAION several years ago. It was quickly diagnosed and I almost immediately started a regimen of high-dose steroids. I am one of the fortunate ones who recovered most of my sight in my eye.
?? I'm writing to say that like you, I was not riddled with risk factors when mine happened; however, like you, I was also experiencing a large amount of stress from my son at that time as he wrestled with judicial issues. I will always attribute the onset of my NAION to that awful, nerve-wracking period of my life.
?? I'm glad to hear that like all of us, you are adapting. I have up and down days as well but welcome to the group and take some small measure of comfort in knowing that there are many of us here supporting each other. Paula
?
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!
?
Professor Paula McGlasson?? She, Her, Hers
Chair & Production Manager, URI Theatre (401) 874-2712 office (401) 315-2227 home (401) 743-1039 cell
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Dear Diana, ?? I experienced my only episode of NAION several years ago. It was quickly diagnosed and I almost immediately started a regimen of high-dose steroids. I am one of the fortunate ones who recovered most of my sight in my eye.
?? I'm writing to say that like you, I was not riddled with risk factors when mine happened; however, like you, I was also experiencing a large amount of stress from my son at that time as he wrestled with judicial issues. I will always attribute the onset of my NAION to that awful, nerve-wracking period of my life.
?? I'm glad to hear that like all of us, you are adapting. I have up and down days as well but welcome to the group and take some small measure of comfort in knowing that there are many of us here supporting each other. Paula
?
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!
?
-- Professor Paula McGlasson?? She, Her, Hers
Chair & Production Manager, URI Theatre (401) 874-2712 office (401) 315-2227 home (401) 743-1039 cell
|
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!
?
|
Re: naionlife.com created by Michael Brown
Thanks so much for your hard and vital work!
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Hi Paul. Thanks Deb for the kudos and remembering the site.?It has taken on a life of its own. Started out to be exclusive to NAION and monocular vision life. Then include binaural in the event another NAION event in the other eye takes place. Once at that point I started including information that anyone with any level of vision loss might benefit from.? I’ve relied on AI for help with structure, outline and some content. As I go on I will try and make the content less sterile sounding. You can tell mine from AI by run on sentences, grammar, punctuation and typo’s.? You will notice a couple instances where I have employed “buttons” with titles to take people to those subjects so those points don’t get lost in miles of paragraphs. I’ve also employed a module known as as “accordian.” Each pleat is a different subject. I’m not sure which is better, buttons or Accordian.? As for graphics, I’ve all but cut them out for now as well as color. As I get a better handle on Accessibility issues I will address and dress up the site for the sighted. I am also including a page for the benefit of the sighted.? Besides help with editing, I would like content and links to resources. I had a number of them last night that I accidentally deleted.? Personal stories would be most appreciated.? Thank you for checking it out.?
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GaryGBrown
Michael B
Diana Patrick