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?
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
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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
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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.
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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.?
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Diane Keasler DLKeasler@...
Life is the school, love is the lesson.
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Nope my hubby got it in the first eye last year swelling resolved, happened to his second eye last month.?
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.
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.?
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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:
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.??
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?
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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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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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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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 groups.io <ourmissbrooks@...> 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 groups.io <mommyflyz@...> 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 groups.io <dka2016.bc@...> 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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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 groups.io <mommyflyz@...> 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 groups.io <dka2016.bc@...> 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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I¡¯ve flown many times in the 3 plus years with NAION. ?A couple have been to the UK and Europe, the others have been cross country here in the US. ?You should check in with your doctor and confirm just in case. ?
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I fly a lot. No issues, but of course check with your medical provider. My biggest issue is navigating the airport.
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On Apr 4, 2025, at 1:45?PM, Donna Asendorf via groups.io <dka2016.bc@...> 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
|
My NO said fighting ok but stay hydrated.
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-------- Original message -------- From: "Donna Asendorf via groups.io" <dka2016.bc@...> Date: 4/4/25 12:02 PM (GMT-08:00) Subject: Re: [NAION] Flying
Great!!! Thank you!!! ? With or without NAION this girl wouldn¡¯t consider hiking Mt Everest any more! ? Built in excuse! Literally! ?? On Apr 4, 2025, at 1:57?PM, Bobbie James via groups.io <rrjames61@...> wrote:
? I've flown at least twice with no issues.? My NO said it's okay because they pressurize the cabin.? She advised that I don't hike Mt. Everest... ? On Fri, Apr 4, 2025, 2:45?PM 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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Michael B
GaryGBrown
Deborah
ReeRee
Danette Janickovic