Coping with diabetes eye diseases

Hi, I have proliferative diabetic retinopathy, and have undergone several laser surgeries. Can you please share your experience and how you cope as you go through this? The laser surgery can hurt at times. Anyone experienced with injections, vitrectomy, etc. Where do you go for help if you lose your vision? Who could help? Planning ahead. I was informed that they can keep me going for sometime. The question is how do I keep myself motivated as I go through this. My hga1c is 6.2 and I’ve had T1D for over 30 years. Thanks for the help ahead of time!

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If you continue to maintain good A1Cs and avoid extended time with bg over 200, you can likely stop any further progression.

I have T1D for 55+ years, but poor control in early years with older insulins and no bg testing. Have had many laser treatments, vitrectomys, cateract surgeries, but remain stable past 30 years since using pump and lowering my A1C.

If needed there are many low vision aid products, @Jen has experience with several, with low vision not due to diabetes.

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This has never happened to me, but my friend who is dealing with visual impairment recommends this group. He says there are a lot of diabetics on there. They might know more about the specifics.

MM1 is right, Jen knows a ton!

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I’ve had type 1 for 50 years. My left eye had laser many years ago and never leaked again. I still see some lines and things but it has been stable. My "good’ ey went a few years ago. I’ve had laser three times and injections two or three times. The last episode was 2018. It seems ok. Again I see some little lines and things since the laser. My side vision has suffered a bit. The worst thing now is cataracts.I am trying to be brave enough to get them done. That I am more fearful of than all the rest. Vitrectomy has never been needed or suggested to me. There is a very good book out, “Diabetic Eye Disease” I believe is the title. The author was very helpful. Dr. Chous. But it’s looking like it has a publication date of 2003 so…

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I’ve had injections in my right eye several times over the course of 1+ years a few years ago. It did help with the most severe issues according to my doctor and I’ve not needed an injection since then as my eyes have stabilized. I get examined every 6 months now as opposed to monthly when I had the issues.

I agree with @MM1 that tight control will really help stabilize the condition and limit further damage.

Thanks for sharing! :grinning: Helps me to keep going through this.

I’ll look into it. Thanks.

Hi @Laura_S, Thanks for sharing. I’ve had cataract surgery in both eyes and didn’t have any problems and it doesn’t cause any pain. Good luck.

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This all started after I went on the pump and my control improved from 7 to 6.2 for several years. Yes, excellent control helps, and I hope it will stabilize, too.

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In my case, I switched to pump from older NPH and Regular insulin, and A1C had been over 10 for awhile. With pump I also started carb counting and matching pump bolus to food carbs. I had a rapid drop to lower A1C. Many others did the same, and they saw a pattern of more rapid eye complications for those doing a fast drop. Your case of 7 to 6.2 would not cause the same effect on eyes.

But others reading this, be sure to work with doctor to slowly drop A1C if starting at much higher numbers. There are studies that suggest this will reduce progression of eye and other complications if you have had high bg for long time before reduction.

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Same here. My eye issues arose shortly after going on OmniPod. I’ve read that rapid improvement in BGs can in fact cause eye issues like this. I’m not sure if this applies to you though. Your pre pump and after pump a1c diff is not dramatic. Mine wasn’t either. But, like MM, I had poor control during earlier years.

Hah, just seeing your response. Totally agree with you! Thanks for adding more clarity to this issue of rapid drop.

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When I had my last leak in 2018, my husband was diagnosed with a tumor behind his eye. We joked we each had opposing eyes not functioning at the time (it’s always taken me a long time to be able to see well enough to drive again.) We got through it, and eventually here it is going to be my turn to do the cataract surgery first. ':wink:

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Hi Janine,
I am 79 and have had T1D for over 66 years. Thankfully, the only complication I have had is retinopathy. Over 40 years ago I had extensive laser treatment in both eyes. My eyes were OK after that. I assume that the retinopathy resulted from not great control during high school and college. Also, there were not very effective monitoring methods back then. I have been on a Medtronic pump for over 25 years (currently a 630) and have been using a CGM (Dexcom 6) for about a year. My AIC’s run right around 6. Most of my problems relate to lows, hardly ever highs. About a year ago I was found to have some swelling around the macular of my left eye. The retina specialist to who I was referred recommended injections. They started with Lucentis, but after 4 injections there was no improvement. They changed to Eylea and there has been some decrease in the swelling after 4 injections. The doctor said that if I did not continue treatment the improvement would disappear. He gave me three choices: continue with the Eylea shots, laser or steroids. The shots appear to be the most successful treatment; they all have side effects, some more serious than others. I guess some patients choose one of the other treatment because they do not want an injection in their eye. The one second of discomfort is far superior to me than the laser pain. I start my second round of Eylea tomorrow. Hope this helps.

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I also had several injections of Eylea which resolved my eye issues. I do think it was responsible for the eye floater in my right eye, as floaters are said to be a side effect of Eylea. The eye improvement is worth the side effect!

Good luck with your injections @Barry4 !

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I have had the avastin eyeball injection several times and it has worked on bringing down the swelling. I had the lasers too and that was generally horrible. I refuse to have them again. The shots are not nearly as bad and they numb your eye totally with a gel and there’s some pain when that wears off but would much rather have that than the lasers. I have had T1 for 45 yrs and had cataract surgery on one eye and now, have to go thru a secondary cataract laser surgery which I am assured is not painful and relatively quick. My control needs to get better. It’s been a bad year for that. Best wishes…

Yesterday, 12 days post cataract surgery, I woke with zero vision in treated eye. I had been doing fine. Ended up emergency visit to find out I have a vitreous bleed . I will follow up with retina guy monday to access. I am T1 50 years and had been doing great . In th past, many lasers . As others shared, this were result of bad insulins, no glucose monitoring , etc.
Anyone have thoughts or history with vitreous bleeds?
Thanks

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So sorry to hear this.

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thanks Marilyn,
I will ride this wave calmly. We are master surfers!

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Hi @lisa_c1:
I’m so sorry this happened to you. You have to be tough to live with diabetes. My thoughts are with you as you overcome the retinal bleed. I’ve been informed that if I have a bleed to keep my head up and to rest until hopefully I can get into see the vitreo-retinal surgeon asap. I was told to stay calm (how easy to say). There are things they can do. That doesn’t mean I’d like it one bit.
Take care! I know you’re not alone. It doesn’t only happen to people with T1D.
Janine