Retinal Vein Occlusion

Posted by ashby1947 @ashby1947, Fri, Jun 21 8:13am

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!

@ashby1947, I was diagnosed with BRVO (Branch Retinal Vein Occlusion) nearly 5 years ago. I receive regularly scheduled injections for the inflamation that occurs when blood seepsfrom the vein and causes blood to puddle inside the eye. I understand your anxiety, however, I want to stress that the retina specialist is highly skilled and will perform specialized imaging scans to see what is going on inside your eye.
Here are discussions where other members are sharing their experiences. I invite you to tread thru them, and join in anywhere.

Slow degradation of my vision. Seeing a retina specialist
https://connect.mayoclinic.org/discussion/after-a-slow-degradation-of-my-vision-especially-close-as-in-computer/

Central retinal artery occlusion
https://connect.mayoclinic.org/discussion/central-retinal-artery-occlusion/

Ashby1947, I hope that you can feel some comfort in knowing that you are not alone. Please let me know how I can help you as you prepare for the appointment.

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@rosemarya

@ashby1947, I was diagnosed with BRVO (Branch Retinal Vein Occlusion) nearly 5 years ago. I receive regularly scheduled injections for the inflamation that occurs when blood seepsfrom the vein and causes blood to puddle inside the eye. I understand your anxiety, however, I want to stress that the retina specialist is highly skilled and will perform specialized imaging scans to see what is going on inside your eye.
Here are discussions where other members are sharing their experiences. I invite you to tread thru them, and join in anywhere.

Slow degradation of my vision. Seeing a retina specialist
https://connect.mayoclinic.org/discussion/after-a-slow-degradation-of-my-vision-especially-close-as-in-computer/

Central retinal artery occlusion
https://connect.mayoclinic.org/discussion/central-retinal-artery-occlusion/

Ashby1947, I hope that you can feel some comfort in knowing that you are not alone. Please let me know how I can help you as you prepare for the appointment.

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Rosemary, thank you very much for your supportive and informative post. I saw the retinal specialist yesterday and have been diagnosed with central retinal vein occlusion (CRVO). He gave me an injection of Avastin, and I am very hopeful that I will regain some of the lost eyesight. I will be having injections on a monthly basis for awhile, and then we will know more. Right now, I'm feeling quite positive and confident. Well….. the eye is a little uncomfortable after the procedure, but that will be better in another day or so. The links were interesting and reassuring. Do you know why you developed BRVO? I have had glaucoma since I was 35, and the doc said that is a significant factor in the occlusion. HBP is also a culprit. I've had problems in the past; however, my BP is well under control now.

I believe a lot of people live with this, and I hope anyone who is experiencing CRVO to contribute to the conversation for information and support.

Thank you again.

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@ashby1947, You must be relieved to have this behind you. Did the doctor give you any indication of whether your vision will be affected long term as a result of the occlusion? With my BRVO, the vision in my affected eye (right) will be permanent. In my situation the hope is to prevent any further damage to the vision. The injections have accomplished this for me, and my vision has remained stable. I have not needed new lenses for the last several years. I do have a cloudy donut shape if I try to look out of just my right eye, but my left eye compensates for it. My Retina Doctor had to intervene to get my Lucentis approved by my insurance because it is for low vision.
They don't know what brought on my BRVO, but blame it on the physical arrangement of my veins in the rear of my eye. I am a transplant recipient, and I asked if it was related to that, and they said that it wasn't.
I now take eye drops nightly. My eye pressure and my blood pressure are under control, so that is a happy thing for me.
My doctor said that when he began medical training, he would never have imagined that there would be a treatment (injection meds) that has saved vision for so many people. The problem that he sees is that many people do not want to keep up with their scheduled treatments.

Be careful not to touch your eye afterwards. I once scratched my cornea. An eye patch for 24 hrs was all that it needed.

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@ashby1947 Good morning, I am Carol, a retired teacher, and it is my husband who has this eye condition. The onset followed the symptoms to the letter. He had his yearly eye exam already scheduled and when he had to read the chart, he discovered he could not see it. Once all the basic tests were done, the specialist started running more tests, and that's when the retinal vein occlusion appeared to be the problem. The doctor showed us the eye behavior in real time: the movement and the veins and the retina. The blood had pooled and the veins were like a tangled web. They would seep more blood into the pool putting pressure on the retina and causing his sight to be affected. The doctor told us that in layman's term it is called an "eye stroke." Treatment is eye injections every six weeks. He puts no other meds in his eye. Unfortunately, our doctor told us that the damage from blood pooling would never be able to repair itself. The injections try to hold the damage in check. He has the injections every six weeks and will for the rest of his life. Our doctor's approach seems different from Rosemary's. So, I suppose it depends on the individual. Our doctor wants nothing put in the eye except the injections—no drops, no patches, no other medicines, just the injections. My husband had an injection two weeks ago and the doctor was pleased. The eye is stable and the injections are doing what they are supposed to do. The one thing my husband is careful about is touching or rubbing his eye.
I hope you have success with your treatments.
Carol

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@retiredteacher

@ashby1947 Good morning, I am Carol, a retired teacher, and it is my husband who has this eye condition. The onset followed the symptoms to the letter. He had his yearly eye exam already scheduled and when he had to read the chart, he discovered he could not see it. Once all the basic tests were done, the specialist started running more tests, and that's when the retinal vein occlusion appeared to be the problem. The doctor showed us the eye behavior in real time: the movement and the veins and the retina. The blood had pooled and the veins were like a tangled web. They would seep more blood into the pool putting pressure on the retina and causing his sight to be affected. The doctor told us that in layman's term it is called an "eye stroke." Treatment is eye injections every six weeks. He puts no other meds in his eye. Unfortunately, our doctor told us that the damage from blood pooling would never be able to repair itself. The injections try to hold the damage in check. He has the injections every six weeks and will for the rest of his life. Our doctor's approach seems different from Rosemary's. So, I suppose it depends on the individual. Our doctor wants nothing put in the eye except the injections—no drops, no patches, no other medicines, just the injections. My husband had an injection two weeks ago and the doctor was pleased. The eye is stable and the injections are doing what they are supposed to do. The one thing my husband is careful about is touching or rubbing his eye.
I hope you have success with your treatments.
Carol

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Hi Carol – Thank you for your thoughtful reply. I'm glad your husband's situation is stable. Did the doctor provide any reason for the retinal vein occlusion? Is it branch or central vein occlusion? My CRVO is due to a combination of glaucoma and HPB. My cardiologist thinks it's more the glaucoma since my BP is under control. However, I have had serious heart issues in the past, so who knows. It is what it is. My Retinal specialist was quite optimistic about me regaining sight in the affected eye. He said it would take time, but I expect most of the vision to return. Interesting, each case is so different. I have dry eyes and the doc said it was fine to use drops, gels, and a warm mast for my meibomian glands.

How is your husband dealing with the loss of vision? How does it affect his balance, his ability to read, use the computer, walk with confidence, etc? I have prism corrective lenses for reading and computer for the diplopia I developed after tube shunt surgery; however, I cannot wear those for walking around. The disorientation plus the loss of vision is a challenge…….

I am so grateful that I found this Mayo Clinic Connect site and have the opportunity to share experiences and information with others who are dealing with challenges. It was quite by accident….. I was walking into Mayo Jacksonville and noticed a monitor board mentioned this service. I believe that when we're open, the universe sends messages……
Sue

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@ashby1947

Hi Carol – Thank you for your thoughtful reply. I'm glad your husband's situation is stable. Did the doctor provide any reason for the retinal vein occlusion? Is it branch or central vein occlusion? My CRVO is due to a combination of glaucoma and HPB. My cardiologist thinks it's more the glaucoma since my BP is under control. However, I have had serious heart issues in the past, so who knows. It is what it is. My Retinal specialist was quite optimistic about me regaining sight in the affected eye. He said it would take time, but I expect most of the vision to return. Interesting, each case is so different. I have dry eyes and the doc said it was fine to use drops, gels, and a warm mast for my meibomian glands.

How is your husband dealing with the loss of vision? How does it affect his balance, his ability to read, use the computer, walk with confidence, etc? I have prism corrective lenses for reading and computer for the diplopia I developed after tube shunt surgery; however, I cannot wear those for walking around. The disorientation plus the loss of vision is a challenge…….

I am so grateful that I found this Mayo Clinic Connect site and have the opportunity to share experiences and information with others who are dealing with challenges. It was quite by accident….. I was walking into Mayo Jacksonville and noticed a monitor board mentioned this service. I believe that when we're open, the universe sends messages……
Sue

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@ashby1947, Sue, I am so glad to hear from you. I must admit that I was hurried when I answered you previously and was not as clear as I should have been. "Haste makes waste." as they say.
My husband has BRVO. The doctor believes the reason the stroke occurred is a result of heart problems. He has battled high blood pressure and eventually high cholesterol since he was a teen; he is 78 years old now. He had a heart attack and a replacement aorta in 2011 and has to see his cardiologist and heart surgeon once a year. He has hospital check tests twice a year, and his meds are adjusted accordingly if need be. He is not blind in his stroke eye; we were lucky to catch it in time and has 20/40 in his stroke eye and 20/30 in his right eye, so his vision is good for a 78 year old man. He reads, emails, and pays bills on his computer, and drives—-does anything he wants, and the eye is not a problem. At first the doctor used Avastin, which worked for about six months, but it produced less and less progress so the doctor changed to Eylea ($2000.00 a procedure!) The insurance would not cover that but it is the med that is getting the job done. He had an appointment two weeks ago and his eye is doing well. The blood pool is basically dry and the swelling and veins are as normal as can be for this condition. He will have to have the injections for the rest of his life. But we have to do what it takes.
I am glad you found Mayo Connect also. It is a wonderful place to get information and share experiences with people who understand and sympathize with the medical problems we all have. I found Mayo Connect when I was diagnosed with diabetes three years ago. I knew nothing about the disease, but with the information and cyber friends on Connect, I have learned a wealth of knowledge about my disease. I changed the foods my husband and I eat since heart and diabetes diets are similar. We do what we can as seniors to stay as well as we can and we basically are in good health for people our age.
If you have other questions or information from your experience, please feel free to ask and share; we are all open to learning everything we can about staying well.
Carol, @retiredteacher

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I have been getting Lucentis injections since 2014. My doctors are trying to find the best spacing for me. Last fall I was on 8 week intervals for total of 4 injections. Right now, I have not had an injection since January, and I will have my next appointment in early August. Doctor will do the scans again to see what is happening. I hope that I don't need another injection. In my specific situation, the hope is that the blood will seek new path and not pool inside my eye. I once went almost a year, without the injection, but then the bleed started again. I always go into my appointment expecting the injection.

@ashby1947, i have found that a cool washcloth over my eyes and an afternoon nap are always my treat on the days when I get the injection. I agree with you, @retiredteacher, aging does bring its share of changes. Has your doctor's office talked to you about a drug discount? There is a chronic disease fund that helps me and others at my doctors office to pay some of the injection drug cost.
We all have so much to learn. I'm glad that we can connect across the miles and support each other.

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I am very happy to report that after only one injection for CRVO, my far vision is 20/20! down from 20/100 at my appt last month. I did have another injection yesterday, Avastin, and will have a third in another month. We will then determine the need for future injections and frequency. I am blessed! I am a huge believer in affirmations, and found these two helpful: "I willingly forgive. I breathe life into my vision and see with compassion and understanding." "I see with love and tenderness." I hope this finds all my Connect friends well. Sue

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@ashby1947 Wonderful news! That is truly terrific. You are blessed. We never know, but have to try. I hope Avastin continues to work and be the injection that keeps the eye improving and stable.
So happy for you.
Carol

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@ashby1947

I am very happy to report that after only one injection for CRVO, my far vision is 20/20! down from 20/100 at my appt last month. I did have another injection yesterday, Avastin, and will have a third in another month. We will then determine the need for future injections and frequency. I am blessed! I am a huge believer in affirmations, and found these two helpful: "I willingly forgive. I breathe life into my vision and see with compassion and understanding." "I see with love and tenderness." I hope this finds all my Connect friends well. Sue

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@ashby1947 I'm so happy for you to have such good results. Its a joy on here when we hear positive news as this

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I am celebrating that I did not need an injection this morning!! I did need to have my eyes dilated, however. I have an appointment scheduled in 3 months, unless I notice a change in my vision. Then I just call and the doctor will see me early.
I feel blessed that I have not needed one in Jan,May, or today. I am also a little apprehensive because once before I went 9 months without needing treatment, then I had to start the sequence again.

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@rosemarya This is terrific news! I am so glad you don't have to have the injection again. My husband is at the doctor's now to get his injection. Unless there has been a miracle, the ophthalmologist said hubbie would need these the rest of his life. He started with every three weeks, then to every six, and this is the first time he's tried eight weeks. He'll see if he can continue the eight or has to go back to six. I hope the report is good too. As far as we know, the treatment for my husband cannot be stopped. I think it's because of the high blood pressure issue. But, we'll take what we can get and hope things remain stable.
Carol

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@rosemarya

I am celebrating that I did not need an injection this morning!! I did need to have my eyes dilated, however. I have an appointment scheduled in 3 months, unless I notice a change in my vision. Then I just call and the doctor will see me early.
I feel blessed that I have not needed one in Jan,May, or today. I am also a little apprehensive because once before I went 9 months without needing treatment, then I had to start the sequence again.

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I am so happy to hear that you are progressing well. Why is it that you do not need the shots? This is all new to me and I'm trying to understand while coping. Right now, the coping seems to be winning the fight for my time. Sigh. While my CRVO appears to be progressing in the right direction (see the doc for another shot in 2 weeks), my diplopia continues to wrestle with my life. I am pretty dogged and determined when it comes to matters of health, and I have continued to search and find helpful resources. However, I have had to DIG. None of my docs was able to suggest community resources. I am fortunate to live in JAX, FL where there are many resources, and I have worked with an excellent optometrist who specializes in low vision. She has referred me to another low vision specialist for some exercises to work with the muscles. Getting some occupational therapy to help with ADLs is a possibility. We have to keep working and take responsibility for our own health. Happy day to everyone! Sue

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My eye doctor's office's brand new (and only) retina specialist wanted to give my eye a shot of Eylea & then Ozurdex. But I have been getting Atorvastin(sp?) shots for about 3 years. I said I wanted to check it out first. Does anyone know about these drugs? The brand new specialist has only been practicing on his own for a few months, previously worked in a hospital clinic at the tail end of his education so I don't have a lot of confidence in him.

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Hi @stephenam and welcome to Connect. You may have noticed I moved your post to this existing discussion on retinal vein occlusions so you can connect with others who have similar experiences. Simply click VIEW & REPLY in your email notification to get to your post.

That must be so confusing to have another drug suggested from the new retina specialist that you don't have any experience with.

Here's some more information on Eylea (aflibercept) from the American Academy of Ophthalmology: https://www.aao.org/eye-health/drugs/what-is-eylea

Ozurdex (Dexamethasone): https://www.mayoclinic.org/drugs-supplements/dexamethasone-intraocular-route/description/drg-20073080

I'd like to introduce @retiredteacher as she has mentioned that her husband has used Eylea in the past and can share her knowledge and experience with this drug.

What has your research found about these medications? You mentioned your lack of confidence in your new specialist, have you brought it up to the lead doctor, or general eye doctor you work with at that practice?

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