Experience of retinal vein (branch) occlus... - Macular Society

Macular Society

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Experience of retinal vein (branch) occlusion?

rosyG profile image
5 Replies

Hi,

I have AMD but this week discovered I have a clot in a branch retinal vein. I have looked this up and have repeat appointments at St George's but would be grateful to hear from anyone who has experienced this-

many thanks

RosyG

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rosyG
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andy1955 profile image
andy1955Macular Society

Hi Rosy,

The Macular Society have a factsheet about 'Retinal Vein Occlusion' which can be sent to you if you email a request to help@macularsociety.org

You can also call our helpline on 0300 30 30 111 (9.00am to 5.00pm Monday to Friday) to request a copy.

I should also mention that we have a network of support groups where you can meet others as well; our helpline can tell you where your nearest group is.

Best wishes

Helpline

Macular Society

Hi rosyg, I was diagnosed with macular branch retinal vein occlusion at the end of Jan after a variety of investigations(didnt find out for a while due to useless locum!). Anyway, saw a nice consultant last week and he explained the blockage caused a bleed and a buld up of waste products in the eye. This was causing macular oedema and puckering at the fovea - so central vision probs but not really noticeable with both eyes open, just thought needed specs changing. When close good eye though its obvious!

Having Lucentis injectiions x3. First one seems to be working as oedema much reduced. They cant say whether will need more than 3 until all done and reviewed. The hope is that the body will find a new pathway on its own once the backlog is cleared.

Its also known as a stroke in the eye, but as things go, its not as serious as a stroke elsewhere eg brain or heart and not as bad a retinal Artery occlusion. Dont know how it sits with your AMD though sorry.

Consultant told me high cholesterol, high BP, diabetes, being overweight all risk factors but not to worry about the other eye (im not diabetic and chol/bp controlled) as chances are unquantifiable.

Hope this is useful info, good luck x

rosyG profile image
rosyG in reply to

Many thanks for all this information. It's good to hear the injections are working well for you. I'd be grateful if you would post progress - it's good to hear from someone with similar experience.

Will do rosyG. Not feeling alone is a big help i agree. Had my 2nd inj recently which went much better than the 1st one (posted on that separately). Probably wont have another check now until after the 3rd one but i'm optimistic, even if I need more they do seem to work and now I've had a painfree inj i'm not living in dread ! As far as seeing goes I havent seen any improvement yet but of course there is still some oedema, time will tell. Hope you are doing ok x

rosyG profile image
rosyG

That's very good to hear- I hope the third one also makes a lot of difference.

I'm waiting to see what is said at the end of April when I have another appointment

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