Retinal Vein Occlusion

Posted by ashby1947 @ashby1947, Jun 21, 2019

I've just been diagnosed with Retinal Vein Occlusion by the Ophthomologist who treats my glaucoma. I see the Retinal Specialist in four days and have been put on Prednisone every two hours to reduce the inflammation. I don't really know what I will be dealing with - central or branch - nor the extent of the damage. My symptom was sudden blurriness over a period of about 3 weeks. In December, 2018 I had tube shunt surgery in my affected (left) eye which was successful in reducing the pressure; however, it left me with diplopia. Corrective (prism) lenses were helping until this blurriness occurred. This post is premature because I don't know exactly what I'm dealing with. However, my anxiety level is moderately high, and I would appreciate any comments from people who have dealt with this and gone through the process. Thank you!

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Hello,
My 53 yr old husband was diagnosed with BRVO this year. He is healthy otherwise, but has a recent history (2 yrs ago) of massive lung blood clots of unknown origin. One day he noticed that his color perception changed and on the following day his vision became blurry in the left eye. We went to the eye ER and he was diagnosed with BRVO. He has been gettin Eyelea injections, now, 10 weeks apart. The eye is healing extremely well and his vision is fabulous. The retina specialist thinks that he will have to have these injections for life. However, my husband finds these injections extremely uncomfortable, followed by 2-3 day of eye pain and redness. Considering how well his eye is healing, I am hoping that he could get the injection on an as needed basis at some point. We plan to discuss it at the next visit in December. Does anyone have any experience with the as needed injections and required follow up? Thank you.

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@mopi, I have been on-the-road and am happy that I opted to opted to open your message tonight!
I was diagnosed with a BRVO quite a few years ago. I did not have any underlying conditions before my BRVO diagnosis. It came on suddenly one night as I saw sparkling lights during the night with my eyes closed. In the morning I called PCP, who sent me to opthamologist, who got me in to see retina specialist next day. I was amazed at the tests and scans that were performed to make the diagnosis and prescribe treatment. I had injections at regular intervals for (I'm guessing) 4-5 years. My scans along with the specialist's visual exam of my eye and retina, eventually showed that my leaking vein had stopped leaking and I was temporarily taken off injection and checked routinely until my doctor team said that I didn't need the injections anymore - unless the leakage began again. He released me to my opthamologist, who keeps a close watch for any reoccurrence. I have not needed an injection for @ 4 years. My eye doctor says I'm fortunate that I did not loose all of vision in my left eye. I don't know how common or rare it is to get off the injections.

I found the injections to be uncomfortable, but not painful. The retina doctors who treated me were amazing. I learned that it was best for me to get the shot early in the morning, and to spend the rest of the day doing nothing, except lying down with a cool wash cloth in a darkened room. My eyes were dilated, so I couldn't see anyway. I always took a tylenol before the office visit, and again in the afternoon. My biggest 'problem' was the floaters and the dark specks that floated across my field of vision for a few days. My girlfriend, also getting injections, used to laugh about swatting imaginary bugs when we had those black specks.
I have partial vision in the left eye. It is like looking thru a blurry grey cheerio. My right eye compensates.

Let me know if I can try to answer any questions. Let me know what your husband finds out in December 🤍

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@rosemarya

@mopi, I have been on-the-road and am happy that I opted to opted to open your message tonight!
I was diagnosed with a BRVO quite a few years ago. I did not have any underlying conditions before my BRVO diagnosis. It came on suddenly one night as I saw sparkling lights during the night with my eyes closed. In the morning I called PCP, who sent me to opthamologist, who got me in to see retina specialist next day. I was amazed at the tests and scans that were performed to make the diagnosis and prescribe treatment. I had injections at regular intervals for (I'm guessing) 4-5 years. My scans along with the specialist's visual exam of my eye and retina, eventually showed that my leaking vein had stopped leaking and I was temporarily taken off injection and checked routinely until my doctor team said that I didn't need the injections anymore - unless the leakage began again. He released me to my opthamologist, who keeps a close watch for any reoccurrence. I have not needed an injection for @ 4 years. My eye doctor says I'm fortunate that I did not loose all of vision in my left eye. I don't know how common or rare it is to get off the injections.

I found the injections to be uncomfortable, but not painful. The retina doctors who treated me were amazing. I learned that it was best for me to get the shot early in the morning, and to spend the rest of the day doing nothing, except lying down with a cool wash cloth in a darkened room. My eyes were dilated, so I couldn't see anyway. I always took a tylenol before the office visit, and again in the afternoon. My biggest 'problem' was the floaters and the dark specks that floated across my field of vision for a few days. My girlfriend, also getting injections, used to laugh about swatting imaginary bugs when we had those black specks.
I have partial vision in the left eye. It is like looking thru a blurry grey cheerio. My right eye compensates.

Let me know if I can try to answer any questions. Let me know what your husband finds out in December 🤍

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Rosemary,

Thank you so much for the reply!

At the last visit, my husband still had small amount of residual blood in the retina, but MUCH less than 10 wks ago. Since he is improving so quickly, I am hopeful that eventually he will be able to stop the injections.

I will keep you posted!

How often do you see your ophthalmologist?

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I was diagnosed with "arterial occlusion of the R eye". I just googled it to see if it is BRVO and it was confirmed. Does anyone know if this is accurate info?
This is just one of many eye Dx's for me. I have AMD, Scarring on the Corneas from Severe Dry Eye, Chronic Diplopia and a Vestibular Disorder [Abnormal SVV tilts to the R], leaving me with an abnormal perception to the R, which feeds into a neurological involuntary movement disorder. I was also told I had a pulverized nerve in one of my eyes, but it was never explained so that I understood it, so that may not mean much. And, as with many seniors, I had cataracts removed from both eyes. Hey, I'm a mess! 😉🤣And, that's just the eyes!! 🤣
As is common with me, I never received any treatment for the arterial occlusion, so I don't know if it was very mild, or what. Another case of Drs leaving you in the dark.
P

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@pkh3381

I was diagnosed with "arterial occlusion of the R eye". I just googled it to see if it is BRVO and it was confirmed. Does anyone know if this is accurate info?
This is just one of many eye Dx's for me. I have AMD, Scarring on the Corneas from Severe Dry Eye, Chronic Diplopia and a Vestibular Disorder [Abnormal SVV tilts to the R], leaving me with an abnormal perception to the R, which feeds into a neurological involuntary movement disorder. I was also told I had a pulverized nerve in one of my eyes, but it was never explained so that I understood it, so that may not mean much. And, as with many seniors, I had cataracts removed from both eyes. Hey, I'm a mess! 😉🤣And, that's just the eyes!! 🤣
As is common with me, I never received any treatment for the arterial occlusion, so I don't know if it was very mild, or what. Another case of Drs leaving you in the dark.
P

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Hi,

Sorry about your eye problems...

BRVO stands for brachial retinal vein occlusion. If you have arterial occlusion, that is CRAO, central retinal artery occlusion.

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@mopi

Hi,

Sorry about your eye problems...

BRVO stands for brachial retinal vein occlusion. If you have arterial occlusion, that is CRAO, central retinal artery occlusion.

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Oh, thank you very much for that information! I will look it up and update my "diagnosed conditions list", which is way too long! LOL! 🤣😉 I appreciate you sharing your knowledge with me!
P

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My vision started dimming a few weeks back and I was having floaters and black dots across my vision. I had an appointment with my heme/onc (Smoldering Myeloma) and told him about my eyes. He pretty much blew me off (he's no longer my heme/onc) as it wasn't cancer related and I called an opthamologist right after this appointment. He saw me immediately, diagosed CRVO in my left eye, and referred me to a retina specialist. I had my first anti-VEGF injection a few days ago and will get another in about a month, with more probably every month as needed. I have Smoldering Myeloma and an autoimmune disorder although an exact cause isn't known. I don't have any of the usual suspects.

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@richardab

My vision started dimming a few weeks back and I was having floaters and black dots across my vision. I had an appointment with my heme/onc (Smoldering Myeloma) and told him about my eyes. He pretty much blew me off (he's no longer my heme/onc) as it wasn't cancer related and I called an opthamologist right after this appointment. He saw me immediately, diagosed CRVO in my left eye, and referred me to a retina specialist. I had my first anti-VEGF injection a few days ago and will get another in about a month, with more probably every month as needed. I have Smoldering Myeloma and an autoimmune disorder although an exact cause isn't known. I don't have any of the usual suspects.

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@richardab, When I noticed odd lights in my vision, I contacted my PCP. He sent me to my Opthamologist who sent me to the Retina specialist who saw me the next day. My diagnosis was BRVO (Branch Retinal Vein Occlusion). I also had injections monthly/6 weeks apart for a while, then they were spaced further apart, then they were weekly, further apart ...as indicated by the retina scans that he used. The good part for me is that eventually my condition stabilized and the blood leakage stopped. I am still checked by my opthamologist and will be sent back to retina specualist when/if there is a change.
As for my vision, I have a blurry spot in the vision of my affected eye. My other eye (says opthamologist) is compensating for the damage.
I am immunosuppressed due to organ transplant, but that has been ruled out as a cause. The retina doctor said that it looks to be a physical factor related to way the veins are arranged in the rear of my eye,
I found it helpful to take a tylenol and to lie down with a cool wash cloth over my eyes when I got home from the appointment. I was not allowed to drive home and had to bring a driver (husband). How did your first injection go for you?

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@rosemarya

@richardab, When I noticed odd lights in my vision, I contacted my PCP. He sent me to my Opthamologist who sent me to the Retina specialist who saw me the next day. My diagnosis was BRVO (Branch Retinal Vein Occlusion). I also had injections monthly/6 weeks apart for a while, then they were spaced further apart, then they were weekly, further apart ...as indicated by the retina scans that he used. The good part for me is that eventually my condition stabilized and the blood leakage stopped. I am still checked by my opthamologist and will be sent back to retina specualist when/if there is a change.
As for my vision, I have a blurry spot in the vision of my affected eye. My other eye (says opthamologist) is compensating for the damage.
I am immunosuppressed due to organ transplant, but that has been ruled out as a cause. The retina doctor said that it looks to be a physical factor related to way the veins are arranged in the rear of my eye,
I found it helpful to take a tylenol and to lie down with a cool wash cloth over my eyes when I got home from the appointment. I was not allowed to drive home and had to bring a driver (husband). How did your first injection go for you?

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Hi Rosemary, My blood pressure spiked the first time the retina specialist said that was the prescribed treatment but he waited a week to do the first one, I read up on it, and it really wasn't too bad. I drove home myself. For about 24 hours it did feel like someone put a burning poker in my eye. Drops definitely helped. He didn't promise my vision would return to normal but said it might improve appreciably. We'll see, still lots of dimness and bluriness, a few floaters.
Thank you.
Richard

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