Anyone else dealing with Macular Edema? I was diagnosed a week ago in my left eye. I elected to start the injection procedure immediately. It wasn’t as bad as I thought it would be. Didn’t even feel the injection and only had minor irritation for a few hours after (felt like sand in my eye). I must have the procedure every 4 weeks for he next 3 months and who knows how often after that. I’ve heard some people getting laser and some going the injection route. I would appreciate any insight from anyone who has had either laser or injections. What should I expect? How often will I need to have it done? According to my Ophthalmologist, I’ll be a patient for life. I’ve managed to maintain an A1C in the 4.8-5.5 range for the last two years. Unfortunately, all the years of not taking care of myself finally caught up to me. Thanks!
@DuckFiabetes, sorry to hear you got that dx 
My son is the T1D in the family, so we don’t have direct experience. However, shortly after he was diagnosed, I got into a long evening discussion with a very opinionated eye surgeon, who directed me to this article, which, he says, reflects his exact feelings: Review of ophtalmology on DME
Some of what the guy told me:
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the injections are for life. The interval of time at which you use them is very important – precision counts.
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there is a big difference between the different chemicals involved: one may not work while the other does
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Combining laser with injections works better than just injections
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laser is most appropriate on non-center-involving edema
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there are different schools on how to use laser that make a BIG difference: don’t let your surgeon decide, discuss it with him and research it
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there are violent opinions about steroids; he is violently against them and thinks they should never be used.
All of this is second-hand. The guy felt that many of the people in the field were either misinformed or making poor decisions, and was telling me that he thought patients should really involve themselves in the decision about what to use.
Absolutely great!
[EDIT] Forgot to mention – aflibercept (great reviews in that article) is now released in the US.
Thank you so much for the info. I truly appreciate it! I lived 20+ years in burnout. No testing. No doctor visits. No A1c’s. Now my eye is paying for it. Please don’t let that happen to your son. Get him involved with other T1’s. I never met another T1 until a few years ago. Best thing to ever happen to me. Peer to peer support is amazing. Thanks again!
OMG, @DuckFiabetes - this makes me shudder, I am so sorry![quote=“DuckFiabetes, post:3, topic:980”]
I never met another T1 until a few years ago. Best thing to ever happen to me. Peer to peer support is amazing.
[/quote]
It is! It has made a world of difference to us!
I don’t have any real relevant experiences to compare to… but a quote I’ve read many times and have taken to heart in my researching of complications…
“retinopathy has a long memory”
So the fact that your eyes may be showing some damage now doesn’t necessarily mean that you’re currently on a path towards a life filled with complications, it may just mean that 8-10 years ago you were… and now that you’re tightly controlled it may be likely that 8-10 years from now nothing will have progressed. Please keep us posted how this goes…
Also, just curious, did they recommend you start (or change) an aspirin regimen at this point? Or let me know if they do when you see your regular doc next…
Thanks Sam! No one has mentioned aspirin to me. I’ll ask in 3 weeks when I go back. I’ll keep you posted.
I’m not suggesting you push for it either, or resist it either… I’m just curious because it seems to be a conflicted subject with eye health with 2 potentially equally valid schools of thought… either thin the blood to increase the flow even if it might increase bleeding, or keep the blood thick, avoid bleeding at all costs, blood flow be damned… I don’t have a strong opinion either way just find the debate interesting…
@duckfiabetes - sorry to pick up an old thread but was interested to know how your eyes are doing now with trearment - I was 35yrs with bad control (8 or 9)and no eye checks I just got an eye exam for the first time in 6yrs and they miraculously didn’t find anything but I was also told
- if you rapidly improve your blood control which I have done - from 8.5 to 5 in 6 months - that t can sometimes speed up eye damage for the first 1-3 yrs so I need to consider exams now every 3 months and may develop it
- the eye will remember the bad control for 10yrs anyway so I could develop it anyway even if my control stays at 5
I was interested to understand were you told otherwise ?
I have very low blood pressure which possibly was what went in my favor
I have experienced diabetic macular edema and the injections to arrest it. I have experienced what appears to be complete reversal, scans have shown my eye to be free of edema for over two years. Treatment with injections can be intimidating but they are not as frightening as they seem. I have included a link to a post I made three years ago at TuDiabetes after my first injection with Lucentis. Cross My Heart and Hope.