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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).
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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.
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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.
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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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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
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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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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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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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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. 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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It called Retrobulbar optic neuropathy?
On Sun, Sep 8, 2024, 19:24 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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Diana Patrick
Michael B
GaryGBrown