BRVO and macular edema. Has anyone's cleared up?

I have BRVO and macular edema. I have a light grey "cloud" shaped like a "v" in the upper middle of my vision, starting right at the center of the amsler grid.

After my first Avastin shot, the cloud became lighter, and dissipated slightly. My retinal specialist said he noticed some of the blood had been absorbed.

After my second shot the cloud moved higher, and seemed to break up more, but after a couple of weeks it's back as bad as it was the first time.

The grid lines are also still wavy from the edema.

I see the MD again Monday and will prob get another Avastin shot, and after that, Eylea.

My question is, has ANYONE had their vision return to what it was? I'm very disappointed with the process and the fuzziness really affects my vision, it makes me almost dizzy.

Thanks in advance.

13 Replies

  • Hi enopmar, I have same conditions but still having inj (19 Lucentis now 2 eyelea, 3rd to come), Although my experience so far has been similar to yours there's a chap who has achieved stability and I believe improvement. His wife posted for them, look for posts by "smilers" (I think, or something similar). His story has been a great help to me and I have hope because of it.

    Without the inj I know I would not have any useful sight in my bad eye so at this point I'm sticking with it as it has brought me back from the big fuzzy many times. I would say though, if you have the grey fuzzy returning between inj it's important you get the inj regularly and you should ring your clinic if they are leaving you longer than 5 weeks for review. I have had 2 emergency appts due to this.

    No one has been able to tell me why my oedema persists but they do say stress is a contributing factor.

    Best of luck to you going forward.

  • I have stress! I do think that is a contributing factor. My last shot will have been 5 weeks, they scheduled me for 4 but I had to change it because of another appointment. I will be sure to keep my appointments in regular in the future, thanks for the advice.

  • My condition is macular oedema but with v similar symptoms to yours. I lost all vision to the "greying out" but regained it after my first Avastin shot. I now have Lucentis which works even better, 64 to date. Although my vision is not back to 6/6 that is due to irreparable radiation damage.

    I know of several people who regained full vision after anti-VEGF shots. However, we must remember that it is different for each and everyone of us.

  • I find Eyesright's post interesting as you seem to have had lots of injections before Eyelea

    I've just had my first injection so can't answer the question posted but I have found studies where 58% patients given Eyelea have had improved eye sight so am crossing my fingers!!

    Do people think a long term treatment plan is needed for BRVO oedema?

  • Hi rosyg, as rennatk says we are all different. I think most people with brvo macular oedema probably get sorted pretty quickly (based on my clinic puzzled reaction to my own situation). Don't lose heart x

  • I just was put on some medication for blood pressure after having had that checked out.

  • I went to my retinal specialist this morning and as I suspected my vision has got worse. The edema got a lot worse and he said there were more white dots (?) on my retina, something he'd never mentioned before. I saw the scan and the edema had looked like a small circle inside the macula, today it looked a lot bigger and like a pimple popping out of the macula. I was alarmed.

    Instead of Avastin, I had a shot of Eylea today about 3 hours ago. Vision still milky as usual after a shot, and a huge black air bubble, which I am sure will go away soon.

    Problem here is we do not know i my insurance will cover the injection, and it costs $1,800, plus I have applied to the drug company to get it cheaper. Today he used a sample and said if they do not cover he will continue to use samples.

    Oh I also started high blood pressure meds on friday and watching my salt intake which is hard!!!

    Keeping my fingers crossed.

  • hi Enopmar

    Very sorry to hear your vision has got worse.Very good that they are making sure you can have Eyelea regardless. I am new to the injections, only having had one Eyelea injection so far- due for more soon- but I found one study that said Eyelea is slightly more effective than some others so hopefully you will get some improvement I think my sight has improved very slightly after this first injection.

    Do let us know how you get on

  • Hello from the Smilers, my hubbie has BRVO and suffered a massive bleed during a long flight. He had had a nasty bout of flu and took advantage of his tubes clearing at altitude and blow his nose with huge success, or so he thought! He had had pretty high blood pressure in the past which was well controlled and his chloresterol had been creeping! He had a very stressful job for many years to add to his mix. Mr S estimated approx 90% vision loss in one eye at the start of his journey, 3 weeks later when we returned to the UK, his optician asked how long he'd had no vision in that eye and referred him on. He had his first Eylea injection and improved to 70%. The improvement continued to around 90%. He had 2 more Eylea injections due to ongoing small bleeds but with no marked improvement. On a subsequent follow up, opaqueness could clearly be seen and so a 4th Eylea injection was done. At the next follow up the small bleed remained and so the Consultant decided to try Laser Treatment to try to stop the bleed. At that appointment, the Consultant reported less fluid and the planned Laser Treatment was cancelled.

    From the onset due to the size of the bleed, the Consultant had confirmed Mr S would never regain full vision, to 90% vision currently we are thankful and hopeful. The upshot of all of this is everyone's journey is different but we continue to find this Forum is a great support. We are now focused on sorting out what does help and so, good reading lighting, have changed specs (verifocals with reaction lens), avoiding night driving particularly on unlit roads etc. The next review is 3rd March so time will tell.

    Good luck to you all on your journey.

    Mr & Mrs Smiler

  • Do you mean your husband has 90 % of his vision now? Great results if so and very heartening for us just starting our injections

  • Yes confirmed Rosy it's usually around 90%. His vision is really good when reading, more problematic in the distance.

  • A week after getting my first shot of Eylea, the blobs on the grid have gotten a lot smaller. I hope they remain this way, as I've had my vision clear up after a shot only to get worse. Keeping fingers crossed.

  • I've had several injections of Avastin over nearly a year and any improvements have been modest and very temporary. I'm leaning toward discontinuing the injections due to the unknown affect these chemicals have on endothelial tissues - the tissues that line blood vessels. I'd hate to be risking serious injury for a temporary and mild improvement in vision.

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