One-eyed AMD

[bel9mex]

I actually have AMD in both eyes but left eye caught early so can see relatively well there. But right eye, after 40 injections over 7 years decided to go rogue and I have very little sights in right eye. Am now having problems with being somewhat one-eyed, such as when pouring into a glass, etc. Can anyone offer advice?

[Getwell89]

What do you mean, “ Going rogue” with your right eye injections? Did you stop those injections after 7 years? I have been tempted to stop my injections for my right eye after 8 years now. My vision is slowly slipping in my right eye, and I dread going to get this injection. It is only when I read these comments on this site that I decide to stick with going for the injection.

Perhaps you just might resume your injection routine and hope some of your sight is restored. Best to you. I hope you do well.

[bel9mex in reply to Getwell89]

What I meant was that, after 7 years, right eyesight appeared to finally be stabilized (not great, but stable). Then, just over a few months, the eyesight deteriorated drastically and it was clear that further injections would no longer help. Meanwhile, left eye - caught earlier - has had about 20 injections but has now been stable for about 4 years, so that is now my saviour! Getting back to your reply, do not stop the injections!!! If they manage to save the eyesight in your right eye, it is worth it, believe me! Don't give up yet.

[Getwell89 in reply to bel9mex]

Hello, bel9mex,

Thank you for your encouraging words! I always feel like quitting because I get nervous and worked up before I go for my appointment. But I know deep down that I must get these injections. It’s just that this last time I had the worst eye test ever, plus my eye was so bloodshot for two weeks.

Now I am back to normal with my eye looking clear. And I will go back for my next appointment. I know that having caring words sent your way does a lot to encourage one to go ahead and face something difficult.

Thank you for the encouragement and best to you with your health!

[bel9mex in reply to Getwell89]

For what it's worth, I had bad reactions to my first few injections but I then had another doctor for the injections and had no bad reactions afterthat! I am now convinced that a lot of that has to do with the doctor doing the injections and how he/she does it! I don't know if my personal experience helps or not. To be honest, I was always terrified of injections of any sort when growing up and the idea of one in my eyes was beyond horrific! But I knew it was necessary to save my sight. In the end, my right eye was caught too late (I think) but the injections have saved left eye, so eyesight - while not perfect - is now my saviour.

[Melene in reply to Getwell89]

No way would I go rogue, too much at stake.

[Becky_MacularSociety Partner]

Good Morning bel9mex,

It is important to look at your environment, do you have enough lighting in areas where you perform tasks (like the kitchen)

Here is our lighting booklet for more information:

macularsociety.org/sites/de...

And our booklet on daily living skills:

macularsociety.org/sites/de...

There is support available from the sensory team, the sensory team are part of Adult Services.

They deal with individuals with a hearing or sight impairment. Individuals can self-refer to them and ask them to attend the home and conduct a needs assessment. They look at aspects such as the lighting and cooking, and will often provide low vision aids that can help, like a liquid level indicator to help you with pouring into a glass etc.

Contact your local authorities to get in touch with the sensory team

Local blind societies have resource centers where it is possible to try out low vision aids which may help around the home also, you can google "local low vision center...." then your area to find out their details or email or call us for details

Best Wishes

Becky

The Macular Society

Advice and Information Service

[e-mail]

0300 3030 111

[bel9mex in reply to Becky_MacularSociety]

Thank you for the info. To be honest, I have all that info already. What I wanted to do was to see if anyone else was in the same predicament as me : many people, including my mother, lose their sight in both eyes. While I have wet AMD in both eyes, the left eye was caught early and now seems stable, whereas right eye has now gone into full-blown AMD, so I have very little sight there, and I find myself having to deal with being somewhat one-eyed!

[JJnan]

Hi bel9mex, my situation is very similar, both eyes, injections for 5 and half yrs is one eye, scarring meant I had to stop having injections last March,

still have inj in other eye....I had to contact concern team as I had to beg for appointments and always couple weeks late then, this went on for some time before i made that decision as like most i hate complaining,

since my 'concern '....I have a different consultant who immediately started monthly injections (not 8-12 weeks) ....wether this was due to them looking at my notes I don't know but I know have an appointment sent out for correct time, first thing he asked was why they stopped inj...

but for now looks like their looking after other eye ....I get what you mean about pouring etc, I wish you all the best xxx

[bel9mex in reply to JJnan]

How lovely to hear from someone who has this same "one-eyed" AMD problem! So much info and advice seems to be geared to people who lose most of their sight in both eyes (and I do so sympathize as losing sight in my right eye has been a real "eye opener" - pun intended!) But confronting being one-eyed is not easy either.

[PatMc50 in reply to JJnan]

I have been having injections in left eye every month for over 2yrs due to wet AMD. Have dry AMD in right. I occasionally have to push for an appointment due to backlog. It has taken until 3mths ago for my left eye to show that the leakage had reduced. Now because of this they are talking about lenthening the time between injections if my next scan, due 3d Mar, shows similar improvement. I don't think this is enough time to lengthen time between injections. Think if they suggest it I will stand up for myself like you and complain! Thank you for giving me the courage to stand up for myself!