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Macular Society
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Severe macular oedema

A few months ago, I thought that I needed new spectacles so I went to an optometrist who immediately referred me to an ophthalmologist telling me that I had retinal bleeding in the right eye. The opthamologist diagnosed me to have a macular oedema consequent upon a retinal vein blockage and gave me an eye injection. This improved my ( then only slight visual problem in that eye) almost immediately but I subsequently could not then have a second injection a month later as is the normal protocol ( long irrelevant story as to why not - involving an "around the World" trip. ) - this second injection being programmed at the ophthalmologists office for next week , basically 9 weeks after the first injection . This has proved to be a very poor decision (by me) and now I have severe macular oedema - so thick that the Doctor could not get a reading on his "machine" . His shocked look on his face and his statement that "you have a LOT of liquid there!!) said it all. So now I have basically no forward vision from my right eye - although I do have side vision. My left eye is good - but my overall vision is being affected by the right side and I have found it better to place a black tape over the right eye spectacle glass. This reduces the amount of forward distortion I have but allows me to have reasonable peripheral vision on both sides.

I am wondering if there is anyone here who has a good eye and a bad eye - what do you do to cope with this situation. ? Any other comments on my current situation please?

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Hi bazza, luckily my eyes aren't so badly affected ( I just get headaches and eye strain) so I can't help you with how to cope with the kind of difference you currently have.

I do however have macular oedema following branch retinal vein occlusion. I'm in year 3 of treatment.

Don't despair yet. There is every chance the next two Lucentis inj will do the trick.

I had them bring my vision back from a big grey blob on more than one occasion.

They will give you more inj as you need them, aiming to lengthen time between.

Best of luck going forward, this is a great support forum, let us know how you get on.

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Dear Bazza1234,

Please contact us on the Macular Society helpline for discussion.

The Macular Society helpline is open 9am – 5pm Monday to Friday on 0300 3030 111.

Alternately, you can contact us via:

help@macularsociety.org

Kind regards,

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Unfortunately, I am in Australia :(

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I have left eye AMD.Just had 1st injection.evertything

Went well.no probs. My right eye seems to have eliminated effects of bad eye .from double vision? to right eye taking over which my opti ian told me "the brain takes over and ignores the bad eye "

Hope you feel better soon.

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Bazza, they ( Mac Soc) are pretty quick answering email. Not quite as good as a phone chat but better than nothing?

I would have thought there'd be an Aussie group to support people with sight impairment? If not, you could start one!

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Dear Bazza1234,

You can still contact us!

We will try to think of any helpful suggestions where we can.

Kind regards,

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Hi Bazza I have a similar issue as a result of treatment with a radioactive plaque which caused the unwanted side effect of cystoid macular oedema. This is treated with anti-VEGF injections however, the sight in the eye remains compromised. Like you, I have found that the limited vision in that eye has an adverse effect on my overall vision. Despite 6/5 vision in the good eye my close vision in particular is compromised. I struggle mightily to read.

For many people the brain compensates after a period of time and ignores the “mush” from the problem eye but it does not happen for us all. I know a number of people with the problem.

Have you allowed a few months for your brain to adjust? If this fails then the best method seems to do as you have already done and partially or wholly cover the affected eye.

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hi Bazza,

I agree with eyesright- I have the same problem and when they tried to move me , at first, to 6 weeks, the oedema returned, so they then extended it more slowly. The injections then worked and I am now having 10 weekly injections but may have to revert to 8. It is a trial and error situation. I should ask your doctor about whether covering your eye is the right thing to do as it may prevent the adjustment that is needed.

Let us know how you get on....

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I went to my local Optometrist ( he was VERY good) and have ordered a set of specs with only one assisted eyeglass in them (the other one is plain glass). Hoping that they will give me the best vision that I can have with only one eye . In the meantime, I start injections in my bad eye on Thursday.

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