|
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!
|
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!
|
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!
|
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.?
|
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
|
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
|
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.?
|
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.
?
Ron Mantlo
?
?
toggle quoted message
Show quoted text
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!
|
I have a follow up with the neuro-ophthalmologist in about 3 weeks; I’ll ask him about the status of my disc and I’ll ask my family doctor about the Factor V Leiden mutation. In the meantime, I’m just trying to get used to this and still do everything I usually do.
|
I am bilateral. It happened to me around 12 years ago. My brother who is in his 80’s has it in one eye and his son also was stricken by it a few years ago. We don’t know why the 3 of us were stricken. Probably all of us have small eye ratio.?
The 3 of us have only lost partial sight and still do most everything in our lives. Thank the Lord.?
Jean in North Carolina?
toggle quoted message
Show quoted text
On Sep 8, 2024, at 11:21?PM, Joseph W Harrison <joeharrison1776@...> 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!
|
My brother who was having retina issues found out from his Dr that he too has disk at risk. ?Fortunately for him he hasn’t had need for a retina repair nor NAION up to this point. My NAION happened within a week of a retina repair procedure. I don’t see any reason why that wouldn’t be genetic. ?
|
I don’t see the point of one either.?
On Mon, 9 Sep 2024 at 11:44?PM, Eibhlin Fionn via <ourmissbrooks= [email protected]> 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
|
GaryGBrown