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Re: Immunotherapy induced NAION


 

Hi Lisa, I first noticed a loss of vision in the bottom half of my left?eye on October 6, 2014, but I still had my central vision. ?3 1/2 weeks later I lost my central vision and on November 4, 2015, a picture taken by my optometrist showed that I had more hemorraghing, either as a result of continual progression or a second attack in that eye. ?And on November 26th, my neuro-ophthalmologist said I still had some swelling of the optic nerve. ?So mine took a while to settle down, probably 2 months. ?It does take getting used to in the first few?months. ?My vision seemed different depending on the lighting. ?As for glasses, they can¡¯t help the field of vision that is lost but what I have done is kept the same prescription I had to assist me with my remaining peripheral and upper eye vision.

That¡¯s my experience...Scott?




On Sunday, February 19, 2023, 6:06 PM, Lisa f <Lisabieznieks@...> wrote:

Idk.. this is so new for me I had 20/ 20 vision before this happened so I¡¯m not used to my eye being blurry. Maybe the eye has settled in. When I¡¯m outside it¡¯s different , when I close the other eye it¡¯s different so I¡¯m just getting used to it I guess. It¡¯s just interesting to hear other¡¯s experiences. I was at the neurologist opthamology 3 weeks ago and she said she will see me in 6 weeks to get my vision checked. I asked about glasses and she said to wait the six weeks for that. Do most people with this get glasses to help?

On Sun, Feb 19, 2023 at 7:50 PM Amy + Adam via <alf.acs=[email protected]> wrote:

Lisa,

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I am not a doctor* so I don¡¯t know. Its just that I personally had not heard of progression going longer than a couple of weeks, and I know that there are some things that have similar symptoms to NAION (some of which are actually treatable). So I just wanted to alert you in case. But it sounds like you got top-of-the-line care. Not everyone does.? My apologies.

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Best,


Adam

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*I can tell you that my NO advised me not to exercise until the optic disk swelling went down¡ª6 to 8 weeks.

From: [email protected] <[email protected]> On Behalf Of Lisa f
Sent: Saturday, February 18, 2023 7:52 PM
To: [email protected]
Subject: Re: [NAION] Immunotherapy induced NAION

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Yes neurologist opthamology along with a team of neurologists before her in the ER at the Cleveland clinic. I had 2 mris and a cat scan. The part of my eye that wasn¡¯t affected was pretty clear 2 weeks after and now the blurr has moved in to more of the eye. I was told up to 6 weeks for the progression to stop.. is that because it takes awhile for the inflammation to go away?

On Sat, Feb 18, 2023 at 7:31 PM Amy + Adam via <alf.acs=[email protected]> wrote:

Hello Lisa-- Did you get diagnosed with NAION by a neuro-ophthalmologist or at least a retina specialist? Four weeks seems like a long time for things to still be getting worse.

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Take care,

Adam ?

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From: [email protected] <[email protected]> On Behalf Of Lisa f
Sent: Saturday, February 18, 2023 4:07 PM
To: [email protected]
Subject: Re: [NAION] Immunotherapy induced NAION

?

Thanks for replying, I am just interested to know others experiences since I¡¯m going through that period now of waiting for stabilization to see what my vision is going to be like. I started 4 weeks ago with right vertical crescent like a crescent moon in right eye now it seems to have shaded over the entire eye¡­?

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