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!

@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.

Jump to this post

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

REPLY

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.

REPLY

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?

REPLY

@stephenam Good morning and welcome to Connect. I am Carol @retired teacher. My husband is the patient with the retinal eye occlusion. He has BRVO. His problem is a result of high blood pressure. The veins became tangled and swollen and blurred his left eye. This came on gradually. We went to our ophthalmologist and had all the tests run, and one showed the interwoven veins, swelling, and the blood puddling that was causing his eye distress. The eye dr. explained to both of us what had happened and what needed to be done to help clear the problem as much as possible. He has Branch Retinal Vein Occlusion. This called for eye injections to help clear the blood and relax the veins. The dr. started with Avastin. My husband had no problems with the injection or the medicine. He had this treatment every three weeks, and the blood began to be absorbed and the veins were not as tight. But, the dr. said he would probably need the injections every two weeks for three months. He did this and there was improvement but not enough after five months, so the dr. changed the injection to Eylea. He has been having this injection med for over a year because it really works so well. The blood pool is dissolved and he sees very well. He is now having the injection every six weeks. The eye dr. told us he could reach a time when he would not need the injections or he might have to have them as a regular part of his health care. We have been extremely pleased with the results from Eylea. My husband has never had any side effects from the procedure or Eylea. I am not familiar with Ozurdex, so I cannot address that medicine. I did research it, and I hope we will stay with Eylea. Have you researched Ozurdex? I understand your hesitation with a relatively inexperienced eye dr. Is there another choice in your area? I researched this situation before we went the first time so that we would know the terms and suggestions from the eye dr. Are you in a place where you have more than one eye doctor? Could you go to another doctor to see what he would do for you?
Carol

REPLY

@stephenam, I also have BRVO and am receiving treatments for it. I get routine injections of Lucentis. My specialist said that if I was not having good results with that particular medication then he would consider changing it. I am very pleased and comfortable with my provider. I have to admit that I do stress when there is a resident assigned to give my injection. But that has proven to be an unfounded fear because the residents are good there, too.
@retiredteacher has provided one of the best explanations of the process that I have found. I believe that you have a right to be comfortable with who is treating you, and a right to know the reason for the particular medicine. I have a girlfriend who us only comfortable with 1 of the 6 retina specialists in this particular practice, so she chooses to drive extra miles to the home office to be treared by him. You are not alone.
I send you my hopes and thoughtss.

REPLY
@stephenam

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.

Jump to this post

Hi, @stephenam – you mentioned in a previous post that the retina specialist at your eye doctor's office wanted to give your eye a shot of aflibercept (Eyelea) and then dexamethasone (Ozurdex). What have you decided about going forward with this treatment?

REPLY

Hi. I am going through that right now. Needles at retinoligist, to relieve pressure from glaucoma. Not horrible actually. Had one laser surgery to remove cataracts. Discovered damage in tge eye and niw i can see perfectly with half my pupil. Very distressing. But I have spoken with many people who have successful treatment and I remain optimistic. Perhaps they can repair it. Good luck to you.

REPLY
@ecg0

Hi. I am going through that right now. Needles at retinoligist, to relieve pressure from glaucoma. Not horrible actually. Had one laser surgery to remove cataracts. Discovered damage in tge eye and niw i can see perfectly with half my pupil. Very distressing. But I have spoken with many people who have successful treatment and I remain optimistic. Perhaps they can repair it. Good luck to you.

Jump to this post

@ecg0, Welcome to Mayo Connect. We are a group of patients who support each other as we share our own experiences. I can see that you have already learned the value of talking to others who have had similar concerns about treatments. I like to think of it as getting it from the patient's perspective.
What kind of treatment are you going thru right now?

REPLY
Please sign in or register to post a reply.
  Request Appointment