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Swelling not improving
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Hello! I'm so happy to have found this group, although not happy it has to exist! I've found relief in reading all the old posts, if just to be able to relate! I am 37 and really struggling with the diagnosis! About a month and a half ago I had blurred vision in my left eye. I originally thought it must be an aura migraine since I struggle with migraines and my neurologist agreed. After it didn't go away she sent me to an ophthalmologist and after many many tests and nights at hospital this was the diagnosis. I do have autoimmune issues and sleep apnea. As well as I was on propranolol for my migraines.? I just visited the ophthalmologist again today to see how I'm doing. He ran out of the room and came back saying that based on the tests and images my optic nerve swelling is WORSE than it was a month ago. He wants me to come back tomorrow morning to see the retinal specialist and for a possible procedure or shot to reduce swelling. Has anyone had this issue? I'm really confused with why my eye is still having issues. I'm also terrified of losing my vision in my other eye. My baby is only 7 years old and I'm a single mom.? Thank you for any help or insight you can give! And I appreciate all your posts more than you can know! Jenny from Michigan |
开云体育Jenny So sorry to hear about your situation.? Seems to me you should see a neuro ophthalmologist immediately.? You need to go to Emerg.? Don't want things to get any worse.? The swelling has to be reduced. . -------- Original message -------- From: Jenny Dillon <Jennydillon814@...> Date: 2023-04-12 8:55 PM (GMT-05:00) Subject: [NAION] Swelling not improving Hello! I'm so happy to have found this group, although not happy it has to exist! I've found relief in reading all the old posts, if just to be able to relate! I am 37 and really struggling with the diagnosis! About a month and a half ago I had blurred vision in my left eye. I originally thought it must be an aura migraine since I struggle with migraines and my neurologist agreed. After it didn't go away she sent me to an ophthalmologist and after many many tests and nights at hospital this was the diagnosis. I do have autoimmune issues and sleep apnea. As well as I was on propranolol for my migraines.? I just visited the ophthalmologist again today to see how I'm doing. He ran out of the room and came back saying that based on the tests and images my optic nerve swelling is WORSE than it was a month ago. He wants me to come back tomorrow morning to see the retinal specialist and for a possible procedure or shot to reduce swelling. Has anyone had this issue? I'm really confused with why my eye is still having issues. I'm also terrified of losing my vision in my other eye. My baby is only 7 years old and I'm a single mom.? Thank you for any help or insight you can give! And I appreciate all your posts more than you can know! Jenny from Michigan |
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Hi Jenny I also had my event around yours . My right eye affected some central vision left peripheral is mostly gone. I also have sleep apnea and before the event I wasn’t using the mask all night. I now do. It really seems like there are a lot of NAION patients with sleep apnea so seems like it is a contributing factor. Do you wear your mask all night.? sending you a hug ?Lisa On Wed, Apr 12, 2023 at 8:56 PM Jenny Dillon <Jennydillon814@...> wrote:
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The ophthalmologist I saw today is neuro ophthalmologist and he consulted with other doctors. They are all seeing me tomorrow morning at 8:30am. I'm very grateful to have not been admitted until then. I think that is the soonest they would see me either way if I was in the hospital or out patient.? On Wed, Apr 12, 2023, 9:01 PM Caroline Hastings- D'Cruz <carolinehdcruz@...> wrote:
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I try very hard to wear the mask 100%. Sometimes I will fall asleep to take a nap and forget. Or if I have a cold it is hard to wear because I use the nose pieces. So I might need to get a full mask for when I am sick. I think my episode might have happened then.? My sleep doctor saw me after my event and had scheduled me for another sleep study to make sure my cpap is working for me and there are no issues.? On Wed, Apr 12, 2023, 9:03 PM Lisa f <Lisabieznieks@...> wrote:
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Hi Jenny,
I'm Paul from Connecticut; i'm 58 years old and I lost the vision in my right eye to NAION last August-I have a hiatal hernia, but not sleep apnea; in fact, I have issues in both eyes that started in an atypical fashion. ?I noticed problems while trying to read bible passages at church-it was as though someone was erasing words off the page. ?My vision rapidly declined in my right eye over a period of 6 weeks-it is now 20/800. ?As for my left eye, the pupil is dilated-driving at night is annoying (it feels like everyone is using their high beams)-it was while driving at night that I first noticed this issue. ?I have boarderline A1C readings and a blood sugar level of 105-total cholesterol is 250. ?My ophthalmologist told me if this happened right in front of him there was nothing he could do about it, then he retired 3 months later; it took me almost 5 months to be seen by a neuro-opthalmologist who confirmed the diagnosis of NAION. ?I do have peripheral vision in my right eye and can read a visual chart if I hold it in my hand. ?I'm wondering if glasses could help by magnifying my peripheral field. ?Keeping you in my prayers! |
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Best wishes.? I will be thinking of you. On Wed, Apr 12, 2023, 9:05 PM Jenny Dillon, <Jennydillon814@...> wrote:
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Hi there lovely. Sending you biggest hugs. We’re you given steroids to reduce the swelling? I was put on a drip of steroids and then 2 weeks of steroid tablets. My nerve swelling reduced but I am left with some blurriness. At t he same time, I had a detached retina and needed that operated on. I had it all! I like you, had sleep apnea and now use a CPA machine so make sure you do something g about that as it is a risk factor. Keep in touch and let us know how you are doing. Peace and love
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I was never given steroids and can't help but to think that would help this swelling. I guess I will know more tomorrow. It seems like most doctors don't know much about what to do with this. I just don't want my vision to get worse! Everyone is so sweet and supportive in here!! It really helps to have people that understand.? On Wed, Apr 12, 2023, 10:56 PM Chiarina Blake <jc.blake2@...> wrote: Hi there lovely. Sending you biggest hugs. We’re you given steroids to reduce the swelling? I was put on a drip of steroids and then 2 weeks of steroid tablets. My nerve swelling reduced but I am left with some blurriness. At t he same time, I had a detached retina and needed that operated on. I had it all! I like you, had sleep apnea and now use a CPA machine so make sure you do something g about that as it is a risk factor. Keep in touch and let us know how you are doing. Peace and love? |
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My doctor stated that several studies actually found that steroids worsened this condition. ?I did find online such studies myself.
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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I'm so sorry to hear this story too Jenny.
Although there's contradictory advice around it - steroids seem to have worked for me.? Others say steroids can worsen vision - I just don't know.
I lost sight in my left eye Aug 22 - was put on IV steroids and then very high reducing dose of them for 2 months.?? The vision didn't remain stable and I lost about 60-70% central vision.
??? Have managed to kinda stay working and still driving with my one good eye.
Obviously TERRIFIED of losing it in the good remaining eye.
Happened to have a scheduled check up on March 20 with my neural opthamologist and they found the good eye optic nerve was apparently very swollen. I had no symptoms whatsoever - like most of us - and felt utterly sick and thought here it comes.
He put me on high dose steroids immediately and took me in as an inpatient to rule out other things - was in hosp for nearly 2 weeks.?? All tests have come back negative but the steroids DID TAKE THE optic nerve SWELLING DOWN.?? I still have good vision in
my other eye -holding on to each day as a miracle.
They don't understand where the inflammation is coming from but are going to do further localised eye scans with dyes to see if it's around the eye.?? Otherwise, I don't know what the future will be - they say long term steroids isn't good but I'm not sure
what other option I have.??? I just thank everything and everyone that the swelling reacted to the steroids and seems out of danger - for now!
Good luck!? Let us know what they say!
From: [email protected] <[email protected]> on behalf of Jenny Dillon <Jennydillon814@...>
Sent: 13 April 2023 4:14 AM To: [email protected] <[email protected]> Subject: Re: [NAION] Swelling not improving ?
I was never given steroids and can't help but to think that would help this swelling. I guess I will know more tomorrow. It seems like most doctors don't know much about what to do with this. I just don't want my vision to get worse! Everyone is so sweet
and supportive in here!! It really helps to have people that understand.?
On Wed, Apr 12, 2023, 10:56 PM Chiarina Blake <jc.blake2@...> wrote:
Hi there lovely. Sending you biggest hugs. We’re you given steroids to reduce the swelling? I was put on a drip of steroids and then 2 weeks of steroid tablets. My nerve swelling reduced but I am left with some blurriness. At t he same time, I had a detached retina and needed that operated on. I had it all! I like you, had sleep apnea and now use a CPA machine so make sure you do something g about that as it is a risk factor. Keep in touch and let us know how you are doing. Peace and love? |
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Oh wow!! I'm so happy for you that the swelling went down in that eye!!!? I'm here at the hospital now! So so nervous! On Thu, Apr 13, 2023, 9:00 AM Andrea Zemmel <Andreazed91@...> wrote:
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You're in the best place.?? Don't be nervous - hit that swelling with steroids - you've just gotta give it a go! ? Just for info - they started me on 80mg daily for 2 weeks and then down to 60mg reducing..... ? good luck hunny?
From: [email protected] <[email protected]> on behalf of Jenny Dillon <Jennydillon814@...>
Sent: 13 April 2023 2:01 PM To: [email protected] <[email protected]> Subject: Re: [NAION] Swelling not improving ?
Oh wow!! I'm so happy for you that the swelling went down in that eye!!!?
I'm here at the hospital now! So so nervous!
On Thu, Apr 13, 2023, 9:00 AM Andrea Zemmel <Andreazed91@...> wrote:
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Where are you located hun? Have they done an MRI and Cat scan on your head yet? Please push them to do more for you. Steroid treatment is important to reduce the swelling? On Thu, 13 Apr 2023 at 1:14 pm, Jenny Dillon <Jennydillon814@...> wrote:
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Hi Andrea, your were lucky for them to have caught the swelling! After episode 1, my NO said no steroids and still did not give them after my 2nd episode 2 weeks later (when I could have been on steroids from the first episode). I have pretty much lost all central vision in my second eye but regained most of it in my first. I will always wonder if steroids could have helped the outcome of my second or prevented the event.
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Caroline J
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