Re: Any interest in a Naion Zoom Support Group?
Yes. That would be great but I live in Australia so Thi la May be a little tri my?
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Hello NAION Friends,
Do you have any interest in participating in a NAION zoom group type self help group that meets once a week (or once a month) to share our experiences, concerns and knowledge?
I am on Pacific Coast Time but am flexible as to anytime and any day of the week.? I feel like this condition is isolating and it would be wonderful to chat and support each other.
Please reply to this email or send me a private email message so I can ascertain if there is any interest. Include your time zone and which day of the week might work for you.?
This would not be a professional therapy zoom but a friendly group self support type meeting.?
Thank you, Debra?
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[debrownstein@...]
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So now it has affected your who vision is it? Kindly share the detail. Thank you
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That¡¯s the typical pattern; exactly what happened to me 8 weeks ago¡. On Apr 9, 2025, at 15:44, ainul wahidah ismail via <eyenull=[email protected]> wrote:
? My doctor said mine was no longer swollen about a month ago. But the lower side of my eye is still dark and I am worry it will affect the upper half of my eye. I'm not sure about this, but I think the chances of vision worsening in the affected eye is while the optic nerve is still swollen.? I believe that is what happened to me - without being forewarned that the optic nerve was still swollen.? I discovered that it was still swollen after going from having lost only the bottom half of vision in my right eye to losing all acuity within less than two weeks.? Upon being first diagnosed, I knew nothing about NAION.
My non-medical, case of one experience is that flying in a pressurized aircraft wasn¡¯t a problem for me.? Also anecdotal is that I had shingles prior to NAION and even was diagnosed with trigeminal neuralgia prior to NAION.? The same virus causes both. I¡¯m not sure if the trigeminal neuralgia was misdiagnosed or is in some kind of remission but I haven¡¯t had any attacks since the first several knee buckling weeks of searing pain in my left jaw. The shingles was on my left upper torso and NAION in my left eye.?
--
Diane Keasler DLKeasler@...
Life is the school, love is the lesson.
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Re: Any interest in a Naion Zoom Support Group?
I am very interested. I feel so much of the time isolated. Hard to explain to someone who isn¡¯t dealing with this the frustration and problems I confront daily. I have conquered some of the obstacles but every day is a new challenge. But with the Lord and support of family I am dealing with this ??
Thank you and let me know how this support group evolves.?
Cheryl C Louisville KY (EST time)
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I think this is a fantastic idea!
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
?
?
Hello NAION Friends,
?
Do you have any interest in participating in a NAION zoom group type self help group that meets once a week (or once a month) to share our experiences, concerns and knowledge?
?
I am on Pacific Coast Time but am flexible as to anytime and any day of the week.? I feel like this condition is isolating and it would be wonderful to chat and support each other.
?
Please reply to this email or send me a private email message so I can ascertain if there is any interest. Include your time zone and which day of the week might work for you.?
?
This would not be a professional therapy zoom but a friendly group self support type meeting.?
?
Thank you,
Debra?
?
?
?
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Re: Any interest in a Naion Zoom Support Group?
Great idea and happy to join when I can - agree that there are so few of us that sharing our stories and experiences is critical in understanding our situation and how to move forward in life. Thanks!
George?
On Wednesday, April 9, 2025 at 08:54:13 PM EDT, Debra B via groups.io <debrownstein@...> wrote:
Hello NAION Friends,
Do you have any interest in participating in a NAION zoom group type self help group that meets once a week (or once a month) to share our experiences, concerns and knowledge?
I am on Pacific Coast Time but am flexible as to anytime and any day of the week.? I feel like this condition is isolating and it would be wonderful to chat and support each other.
Please reply to this email or send me a private email message so I can ascertain if there is any interest. Include your time zone and which day of the week might work for you.?
This would not be a professional therapy zoom but a friendly group self support type meeting.?
Thank you, Debra?
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[debrownstein@...]
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Re: Any interest in a Naion Zoom Support Group?
I think this is a fantastic idea!
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 04/09/2025 8:53 PM EDT Debra B via groups.io <debrownstein@...> wrote:
?
?
Hello NAION Friends,
?
Do you have any interest in participating in a NAION zoom group type self help group that meets once a week (or once a month) to share our experiences, concerns and knowledge?
?
I am on Pacific Coast Time but am flexible as to anytime and any day of the week.? I feel like this condition is isolating and it would be wonderful to chat and support each other.
?
Please reply to this email or send me a private email message so I can ascertain if there is any interest. Include your time zone and which day of the week might work for you.?
?
This would not be a professional therapy zoom but a friendly group self support type meeting.?
?
Thank you,
Debra?
?
?
?
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Thank you everyone who has responded about the flying- it's very reassuring to know that flying has not been an issue for anyone! All the notes have been helpful. Thanks, Becky ----------------------------------------- From: "George Ousler via groups.io" To: [email protected]Cc: Sent: Wednesday April 9 2025 4:23:21PM Subject: Re: [NAION] Naion
Hi Becky,
I had my first NAION in 2016 (age 40) - right eye, losing
about 35% of my inferior vision. I fly internationally for my work
and definitely flew within a couple of months my episode with no
issues. I then had a second NAION last November (age 49) - left
eye, losing about 35% of my inferior vision. This episode was
caused by use of Monjourno for approximately 6 months. I flew about
2 months after this and have not had any issues. My neuro
ophthalmologist said that I should not be concerned with flying
since cabins are pressurized. His follow on comment is that if you
scuba dive and descend / ascend too quickly I could have an issue.
From my research and experience the only recommendation is to not
fly while the optic nerve is swollen after an episode. This usually
takes 6 to 8 weeks and is when you are most vulnerable for more
vision loss. Once the swelling is gone I¡¯ve been told that vision
loss is no longer possible. Hope this helps. George?
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On Wednesday, April 9,
2025, 4:59 PM, Michael B via groups.io
<fauxevermb@...> wrote:
Hi Becky. I am 14 months in. My retinal specialist,
who has been treating me as referred by ophthalmologist, told me
flying was fine. That was after the first month or two. I have
flown a few times and have had no problems. As long as the aircraft
is pressurized you should be fine.
On Wed, Apr 9, 2025
at 7:59?AM ultra12 via
<ultra12@...>
wrote:
I am new to the group- my naion episode happened late January
of this year. I was given high steroids for 4 days, not sure if it
was any help.? Developed a severe case of shingles three days
later. I believe I had a very light episode of the shingles a
couple of months prior to my naion episode. (they cannot tell me
what cased this) One of my concerns right now is flying. We have a
trip planned for late May to Ireland. When I saw a
neuro-ophthalmologist, one of his residents expressed that I should
take flying precautions in the first year. Implying that the first
year is the most critical for getting naion in the other eye. But
the neuro-ophthalmologist wasn't as concerned as the
resident.? My local ophthalmologist wasn't concerned about
flying that much at all. With that being said, has anyone ever
heard of flying in the first year of diagnosis to be a risk
factor?
?
Thank You,?
Becky Miller
|
Any interest in a Naion Zoom Support Group?
Hello NAION Friends,
Do you have any interest in participating in a NAION zoom group type self help group that meets once a week (or once a month) to share our experiences, concerns and knowledge?
I am on Pacific Coast Time but am flexible as to anytime and any day of the week.? I feel like this condition is isolating and it would be wonderful to chat and support each other.
Please reply to this email or send me a private email message so I can ascertain if there is any interest. Include your time zone and which day of the week might work for you.?
This would not be a professional therapy zoom but a friendly group self support type meeting.?
Thank you, Debra?
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[debrownstein@...]
_._,_._,_
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Hi Becky,
I had my first NAION in 2016 (age 40) - right eye, losing about 35% of my inferior vision. I fly internationally for my work and definitely flew within a couple of months my episode with no issues. I then had a second NAION last November (age 49) - left eye, losing about 35% of my inferior vision. This episode was caused by use of Monjourno for approximately 6 months. I flew about 2 months after this and have not had any issues. My neuro ophthalmologist said that I should not be concerned with flying since cabins are pressurized. His follow on comment is that if you scuba dive and descend / ascend too quickly I could have an issue. From my research and experience the only recommendation is to not fly while the optic nerve is swollen after an episode. This usually takes 6 to 8 weeks and is when you are most vulnerable for more vision loss. Once the swelling is gone I¡¯ve been told that vision loss is no longer possible. Hope this helps. George?
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On Wednesday, April 9, 2025, 4:59 PM, Michael B via groups.io <fauxevermb@...> wrote: Hi Becky. I am 14 months in. My retinal specialist, who has been treating me as referred by ophthalmologist, told me flying was fine. That was after the first month or two. I have flown a few times and have had no problems. As long as the aircraft is pressurized you should be fine.
I am new to the group- my naion episode happened late January of this year. I was given high steroids for 4 days, not sure if it was any help.? Developed a severe case of shingles three days later. I believe I had a very light episode of the shingles a couple of months prior to my naion episode. (they cannot tell me what cased this) One of my concerns right now is flying. We have a trip planned for late May to Ireland. When I saw a neuro-ophthalmologist, one of his residents expressed that I should take flying precautions in the first year. Implying that the first year is the most critical for getting naion in the other eye. But the neuro-ophthalmologist wasn't as concerned as the resident.? My local ophthalmologist wasn't concerned about flying that much at all. With that being said, has anyone ever heard of flying in the first year of diagnosis to be a risk factor?
?
Thank You,?
Becky Miller
|
Hi Becky. I am 14 months in. My retinal specialist, who has been treating me as referred by ophthalmologist, told me flying was fine. That was after the first month or two. I have flown a few times and have had no problems. As long as the aircraft is pressurized you should be fine.
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I am new to the group- my naion episode happened late January of this year. I was given high steroids for 4 days, not sure if it was any help.? Developed a severe case of shingles three days later. I believe I had a very light episode of the shingles a couple of months prior to my naion episode. (they cannot tell me what cased this) One of my concerns right now is flying. We have a trip planned for late May to Ireland. When I saw a neuro-ophthalmologist, one of his residents expressed that I should take flying precautions in the first year. Implying that the first year is the most critical for getting naion in the other eye. But the neuro-ophthalmologist wasn't as concerned as the resident.? My local ophthalmologist wasn't concerned about flying that much at all. With that being said, has anyone ever heard of flying in the first year of diagnosis to be a risk factor?
?
Thank You,?
Becky Miller
|
That¡¯s the typical pattern; exactly what happened to me 8 weeks ago¡.
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On Apr 9, 2025, at 15:44, ainul wahidah ismail via groups.io <eyenull@...> wrote:
? My doctor said mine was no longer swollen about a month ago. But the lower side of my eye is still dark and I am worry it will affect the upper half of my eye. I'm not sure about this, but I think the chances of vision worsening in the affected eye is while the optic nerve is still swollen.? I believe that is what happened to me - without being forewarned that the optic nerve was still swollen.? I discovered that it was still swollen after going from having lost only the bottom half of vision in my right eye to losing all acuity within less than two weeks.? Upon being first diagnosed, I knew nothing about NAION.
My non-medical, case of one experience is that flying in a pressurized aircraft wasn¡¯t a problem for me.? Also anecdotal is that I had shingles prior to NAION and even was diagnosed with trigeminal neuralgia prior to NAION.? The same virus causes both. I¡¯m not sure if the trigeminal neuralgia was misdiagnosed or is in some kind of remission but I haven¡¯t had any attacks since the first several knee buckling weeks of searing pain in my left jaw. The shingles was on my left upper torso and NAION in my left eye.?
--
Diane Keasler DLKeasler@...
Life is the school, love is the lesson.
|
My doctor said mine was no longer swollen about a month ago. But the lower side of my eye is still dark and I am worry it will affect the upper half of my eye.
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Show quoted text
I'm not sure about this, but I think the chances of vision worsening in the affected eye is while the optic nerve is still swollen.? I believe that is what happened to me - without being forewarned that the optic nerve was still swollen.? I discovered that it was still swollen after going from having lost only the bottom half of vision in my right eye to losing all acuity within less than two weeks.? Upon being first diagnosed, I knew nothing about NAION.
My non-medical, case of one experience is that flying in a pressurized aircraft wasn¡¯t a problem for me.? Also anecdotal is that I had shingles prior to NAION and even was diagnosed with trigeminal neuralgia prior to NAION.? The same virus causes both. I¡¯m not sure if the trigeminal neuralgia was misdiagnosed or is in some kind of remission but I haven¡¯t had any attacks since the first several knee buckling weeks of searing pain in my left jaw. The shingles was on my left upper torso and NAION in my left eye.?
--
Diane Keasler DLKeasler@...
Life is the school, love is the lesson.
|
Nope my hubby got it in the first eye last year swelling resolved, happened to his second eye last month.?
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On Wed, Apr 9, 2025 at 1:37?PM Diane Keasler via <dlkeasler= [email protected]> wrote: I'm not sure about this, but I think the chances of vision worsening in the affected eye is while the optic nerve is still swollen.? I believe that is what happened to me - without being forewarned that the optic nerve was still swollen.? I discovered that it was still swollen after going from having lost only the bottom half of vision in my right eye to losing all acuity within less than two weeks.? Upon being first diagnosed, I knew nothing about NAION.
My non-medical, case of one experience is that flying in a pressurized aircraft wasn¡¯t a problem for me.? Also anecdotal is that I had shingles prior to NAION and even was diagnosed with trigeminal neuralgia prior to NAION.? The same virus causes both. I¡¯m not sure if the trigeminal neuralgia was misdiagnosed or is in some kind of remission but I haven¡¯t had any attacks since the first several knee buckling weeks of searing pain in my left jaw. The shingles was on my left upper torso and NAION in my left eye.?
--
Diane Keasler DLKeasler@...
Life is the school, love is the lesson.
|
I'm not sure about this, but I think the chances of vision worsening in the affected eye is while the optic nerve is still swollen.? I believe that is what happened to me - without being forewarned that the optic nerve was still swollen.? I discovered that it was still swollen after going from having lost only the bottom half of vision in my right eye to losing all acuity within less than two weeks.? Upon being first diagnosed, I knew nothing about NAION.
toggle quoted message
Show quoted text
My non-medical, case of one experience is that flying in a pressurized aircraft wasn¡¯t a problem for me.? Also anecdotal is that I had shingles prior to NAION and even was diagnosed with trigeminal neuralgia prior to NAION.? The same virus causes both. I¡¯m not sure if the trigeminal neuralgia was misdiagnosed or is in some kind of remission but I haven¡¯t had any attacks since the first several knee buckling weeks of searing pain in my left jaw. The shingles was on my left upper torso and NAION in my left eye.?
-- Diane Keasler DLKeasler@...
Life is the school, love is the lesson.
|
My non-medical, case of one experience is that flying in a pressurized aircraft wasn¡¯t a problem for me. ?Also anecdotal is that I had shingles prior to NAION and even was diagnosed with trigeminal neuralgia prior to NAION. ?The same virus causes both. I¡¯m not sure if the trigeminal neuralgia was misdiagnosed or is in some kind of remission but I haven¡¯t had any attacks since the first several knee buckling weeks of searing pain in my left jaw. The shingles was on my left upper torso and NAION in my left eye.?
|
Hello, everyone.? I had my NAION event just about a year ago.? My neuro-op cautioned me about flying and most other activities, as well, during the time that he considered the actual NAION to be unstable.? My vision changed significantly, for the worse, within the months following the actual event.? He finally put me on a heavy duty course of steroids for about a month and my vision then improved - but only marginally.
Once he determined my vision had stabilized, I was given the OK to fly.? I've flown twice since then without incident.
Deborah A. Schroth, Esq. 904-333-2537 On Wed, Apr 9, 2025 at 11:38?AM Joseph W Harrison via <joeharrison1776= [email protected]> wrote:
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Never heard that the first year after a NAION event influences activity of the fellow eye.? And, since planes are pressurized, I doubt that flying is an issue at all regarding NAION.??
I am new to the group- my naion episode happened late January of this year. I was given high steroids for 4 days, not sure if it was any help.? Developed a severe case of shingles three days later. I believe I had a very light episode of the shingles a couple of months prior to my naion episode. (they cannot tell me what cased this) One of my concerns right now is flying. We have a trip planned for late May to Ireland. When I saw a neuro-ophthalmologist, one of his residents expressed that I should take flying precautions in the first year. Implying that the first year is the most critical for getting naion in the other eye. But the neuro-ophthalmologist wasn't as concerned as the resident.? My local ophthalmologist wasn't concerned about flying that much at all. With that being said, has anyone ever heard of flying in the first year of diagnosis to be a risk factor?
?
Thank You,?
Becky Miller
|
Never heard that the first year after a NAION event influences activity of the fellow eye.? And, since planes are pressurized, I doubt that flying is an issue at all regarding NAION.??
toggle quoted message
Show quoted text
I am new to the group- my naion episode happened late January of this year. I was given high steroids for 4 days, not sure if it was any help.? Developed a severe case of shingles three days later. I believe I had a very light episode of the shingles a couple of months prior to my naion episode. (they cannot tell me what cased this) One of my concerns right now is flying. We have a trip planned for late May to Ireland. When I saw a neuro-ophthalmologist, one of his residents expressed that I should take flying precautions in the first year. Implying that the first year is the most critical for getting naion in the other eye. But the neuro-ophthalmologist wasn't as concerned as the resident.? My local ophthalmologist wasn't concerned about flying that much at all. With that being said, has anyone ever heard of flying in the first year of diagnosis to be a risk factor?
?
Thank You,?
Becky Miller
|
I am new to the group- my naion episode happened late January of this year. I was given high steroids for 4 days, not sure if it was any help.? Developed a severe case of shingles three days later. I believe I had a very light episode of the shingles a couple of months prior to my naion episode. (they cannot tell me what cased this) One of my concerns right now is flying. We have a trip planned for late May to Ireland. When I saw a neuro-ophthalmologist, one of his residents expressed that I should take flying precautions in the first year. Implying that the first year is the most critical for getting naion in the other eye. But the neuro-ophthalmologist wasn't as concerned as the resident.? My local ophthalmologist wasn't concerned about flying that much at all. With that being said, has anyone ever heard of flying in the first year of diagnosis to be a risk factor?
?
Thank You,?
Becky Miller
|
I am so happy to hear that and to know that part of my life is not over!! Thank you!?
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On Apr 4, 2025, at 9:40?PM, Chiarina Blake via groups.io <jc.blake2@...> wrote:
? Hi Donna. I have been flying since my episode 5 years ago. No problems at all? On Sat, 5 Apr 2025 at 5:45?am, Donna Asendorf via <dka2016.bc= [email protected]> wrote: Hello! I am interested to know if we are still able to fly? Just like any other information on NAION, conflicting and limited!
I appreciate being able to be on this forum! There is strength in numbers! We need each other!
Thanks, Donna
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Hi Donna. I have been flying since my episode 5 years ago. No problems at all?
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On Sat, 5 Apr 2025 at 5:45?am, Donna Asendorf via <dka2016.bc= [email protected]> wrote: Hello! I am interested to know if we are still able to fly? Just like any other information on NAION, conflicting and limited!
I appreciate being able to be on this forum! There is strength in numbers! We need each other!
Thanks, Donna
|
Thank you to all of you!!? I feel like I just hit the lottery!! I promised myself this year that I am going to start living again! Thanks for the encouragement!?
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On Apr 4, 2025, at 3:57?PM, ReeRee via groups.io <Kycouch@...> wrote:
? This is good to know!!! On Fri, Apr 4, 2025 at 4:54?PM George Ousler via <sailfishin= [email protected]> wrote:
I¡¯ve also flown post NAION with no issues. I travel internationally for work and spend up to 12 hours on a plane. My neuro ophthalmologists also said that it¡¯s ok to fly since the cabin is pressurized.?
On Friday, April 4, 2025, 4:38 PM, Eibhlin Fionn via <ourmissbrooks=[email protected]> wrote:
I have flown many times since my total loss right eye in 2007 both domestically and out of the country. I agree with the other poster, much more concerned with navigating the actual airport. Have faith!
On Friday, April 4, 2025 at 04:30:10 PM EDT, Danette Janickovic via <mommyflyz= [email protected]> wrote:
I fly a lot. No issues,? but of course check with your medical provider. My biggest issue is navigating the airport. > On Apr 4, 2025, at 1:45?PM, Donna As endorf via <dka2016.bc= [email protected]> wrote: >
> ?Hello! I am interested to know if we are still able to fly? Just like any other information on NAION, conflicting and limited! > I appreciate being able to be on this forum! There is strength in numbers! We need each other! > Thanks, Donna > > > > >
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