When I was first treated for retinopathy about ten years ago with vitrectomies and injections, I was advised that had the issue arisen ten years earlier, I would probably be blind by then. Npmedical science has made a lot of progress in recent years.
I had lasers about ten years ago, (about 20 years into T1 DM) and was stable after that. Now, itās progressed a bit and Iām currently getting monthly Eyelea (?) at $3,500 a pop (thank God for insurance).
Interestingly, the retinal photographs did not show the progression but a Fluorescine angiogram did.
I note that my acuity is dropping which I hope these injections help.
I really wish you with all my heart to get all better very soon! How was your a1c the last 10 years?
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I spoke too soon when I said that I hadnāt had any signs of retinopathy in the last 40 yrs. Yesterday my eye suddenly filled with blood. This morning I had laser surgery. It is between a micro and macro aneurysm. I suppose I shouldnāt be so surprised after 62 yrs as a type 1, but I thought my non diabetic A1cās for almost 20 yrs, would save me.
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Yikes. I feel like thatās my worst fear.
I have my eyes checked every year even though they tell me I can go 2 years.
My sugars are good right now but years of 7.0 a1c probably has some cumulative effect.
Iāll be lucky to make it to my 64 year diabetes anniversary. I will be 85 at that point.
I never imagined living to 60 let alone living well. For 60 years.
Please let us know how your eyes heal.
Hoping you make a complete recovery
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Sorry to read this, Marilyn! Like you, I have placed a lot of weight on good blood glucose levels for most of my time with diabetes as being able to protect me from complications. Unfortunately, all good blood sugars can do is reduce our risk of complications, not eliminate that risk.
Youāre doing the best you can with managing your glucose. Take comfort in that fact and know that you will manage whatever comes your way.
Iāve had a threat to my eyesight arise in the last year, although it is not retinopathy. The surface of my left retina has wrinkled and distorted my vision. This condition is called epiretinal membrane or macular pucker. I donāt know that itās related to being diabetic as my brother-in-law also lives with this and he is not diabetic. I wasnāt even aware of this condition until I received a diagnosis.
Do your research, discover practices and doctors who can help, and then enjoy your life for the happiness it can give.
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Thanks Terry. I am shocked to suddenly have retinopathy. I feel like I need to wake up from a bad dream. I feel like I did when I suddenly needed 2 heart stents after being a diabetic for 51 yrs with only minor complications.
I just was reading a little bit about wrinkled retinas yesterday. I too had never heard of that condition. I hope that you are pleased with the care you are getting for them. Has your vision returned to normal or is that even possible?
I guess we never know what can hit us out of the blue. The challenge is to have faith that all will be well.
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No matter what happens to each of us, we all get to pick the frame that we put it in. That makes all the difference. Life is not fair and it makes no sense to spend any energy or attention demanding fairness.
I think you can take hope in the fact that your retinopathy took a long time to show up. It seems to me that progression to a more serious state would take a long time. Iāve read so many accounts here of people who retained their eyesight decades after undergoing many treatment procedures.
The only treatment I know to fix an epiretinal membrane is a vitrectomy that includes flattening out the wrinkled tissue that lives on top of the retina. The retina specialist I consulted with said that she wouldnāt operate on anyone who has 20/25 eyesight. That stopped me from looking for a second opinion.
My vision is slightly distorted but Iām always aware of it and I donāt think it will get any better. I can see a waviness in horizontal lines like a window sill. Reading is more difficult and slower now. But I do have functional eyesight!
While I was always worried about my eyesight and kidneys, this more obscure diagnosis underlines the fact that we often worry about the wrong things. Worrying should wait until reality shows up and only then to the extent that it motivates you to take pragmatic counter-action or adjust your attitude to properly reframe the event.
Sorry for the bad luck, Marilyn. You can handle this!
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Iām a little confused by the terms. I need to say I know very little about eyes and retinopathy.
Maybe if I understood the terms better.
Marilyn said she had a bleed. Is that the same as retinopathy ?
I thought that if you have a bleed you could starve off part of the retina. But if you act fast, you can prevent retinal damage.
So I know the retina is a flat region of nerves sensitive to light.
Is that the only part that bleeds. I always assumed bleeds were inside the eye not always involving the retina.
Or are bleeds and retinopathy the same thing?
Sometimes, but not always. You can have retinopathy and not bleed and eyes can bleed for many reasons other than retinopathy. I had two terrible ones where both my eyes filled with blood . I watched them black out, like someone was pulling a blanket up over my eyes, while standing in the middle of the school cafeteria line. Was one of the must terrifying experiences of my whole life. Turned out it had nothing to do with my diabetes, but rather something very near-sighted people are prone to. Basically the vitreous shrinks and pulls away from the blood vessels at the back of the eye. Itās totally normal and usually happens without any notice, but sometimes happens more radically with lots of blood like in my case. I was completely blind until the blood dissipated, then vision was back to normal. No lasting damage and the doctor didnāt actually do anything to treat it. Looking back, I do wonder if maybe I was really high and dehydrated and my diabetes was actually an influence, if not the direct cause.
Retinopathy can most definitely cause vision damage, but itās not like springing a leak breaks that section of the eye. More often youāre left with a temporary stain in your vision like an ink blot. You may see a wispy shadow on the inside of you eye with dark, dense areas where the blood is compact and more translucent areas as it spreads out. You may eventually just be left with a sort of haze in your eye. You can see through it, but not perfectly, like itās a smoky day (anyone who lives near wildfires knows what I mean). It can take months for all the blood to break down and stop obstructing your vision, but when it does, all things can go back to normal. It doesnāt necessarily mean permanent damage.
I donāt actually know at what point permanent damage does come intro play. It seems like such a foreign concept to me because Iāve had a whole lot of bleeds over the years that have resolved themselves on their own without damage. Vision goes back to normal. My vision has barely changed at all throughout my adult life. The doc always says I donāt need new glasses, my current prescription is fine (or āgood enoughā). Peripheral is unchanged, etc ā¦ If I buy new glasses, itās for a fun change of pace, not because I have to. Even with the current big bleed Iām under treatment for, which really scared me, theyāve told me my vision hasnāt changed but is just blocked and will go back to normal when all the blood breaks down.
I havenāt gotten the lasering done yet, and the doctor tells me that sometimes it restores vision loss but mostly itās to prevent future loss. Iām always like, āwhat loss??ā. I know I canāt take it for granted, though, and that diabetes can and does cause blindnessā¦ But it doesnāt seem to happen as easily as many think it does.
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Friday my eye suddenly was filled with lines, blotches, squiggles and thousands of tiny little dots. I figured that I had a retina detachment or retinopathy. 40 yrs ago, when still urine testing, I had some bright flashing in my eyes, and found that I had the beginnings of retinopathy. I got my glucose levels down a lot, and my eyes cleared up. Ophthalmologists have always been amazed that I had no signs of having diabetes. No flashing of light this time just blood.
My vision is still 20/20. I had laser treatment yesterday which took about 5 minutes and on the 31st, he will ablate the source. As of today, I am still looking through the blood. I expect that this procedure will take care of the problem, and my eyes will be fine. I am grateful that this has happened to me at 70 rather than years ago.
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I have never been diagnosed with any retina issues. But I have floaters that started appearing in my 30 s.
They look like hairs with little blotches on them. I only see them when I look at the sky or a white wall.
They tend to settle lower and lower but then new ones appear.
Iāve never had anyone explain what they are or if itās a sign that there is another issue, or possibly an old bleed.
Everyone just says they are normal,but itās disconcerting.
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Thatās what I most commonly see, too. The hairy spot. Itās something I find really hard to describe, and that I ātooā have always thought of as āfloatersā. I was recently corrected, though, that floaters refers to something else. They sure seem to āfloatā around to me! Theyāre not usually disruptive, just annoying, and I donāt often notice them unless I close the other eye and look for them.
The last couple of years I have had a great many floaters in my right eye, which are difficult to ignore when reading, writing on my iPad, or in the car on a sunny day. I guess there is something that can be done surgically about them, but up till now, I have decided to just tolerate them. I say floaters, but they are more like spider webs.
I have seen an ophthalmologist and a retina specialist about this problem.
The blood in my left eye looks somewhat the same except, there are thousands of tiny dots and many more lines and squiggles.
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I have a floater in my right eye which appeared after several monthly injections of Eylea. I read that floaters are a side effect of Eylea. My Dr told me not to worry that floaters eventually dissipate. Mine hasnāt but Iāve gotten used to it despite it blocking the central view, sort of seems like there is a gnat in my eye!. Cāest la vie.
@Marilyn6 I hope your eye is healing well and that the blood has dissipated. Thank goodness you took quick action to resolve it!
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Yudge. I remember this Marilyn. Hard to just be patient and wait. Itās so darn up in your face (!) and unhinging. Really glad you reached out.
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Iām sorry to hear that. My brother was diagnosed with NDPR 5 years ago. At the time, his doctor advised him to undergo laser treatment. Because, in the long run, laser treatment can prevent or postpone vision loss. The treatment was very effective, and one important point to remember is that the sooner the condition is identified, it becomes easier to treat and save the vision. This is based on my own personal experience. It is preferable that you seek medical advice.
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I was diagnosed with retinopathy back in June of 2020. I keep my A1C down but that doesnāt always help me. I think stress is BIG factor in my retinopathy. I also was diagnosed with severe retinopathy and I have had laser and eyelea shots. The eyelea shots work for me but are only temporary so that sometimes brings on severe depression. I no longer drive and sometimes feel like a burden though people have been kind to me. I kick myself for getting this incurable disease. Yes diabetes runs in my family but no one I know of has had retinopathy. I just found out from my attorney I also have glaucoma. Yes my attorney not my Doctor told me. I am also afraid of going blind. Itās scary. I feel for everyone who is suffering. Thanks for listening.
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I share some of your concerns. Getting Eyelea monthly and had a few rounds of laser. I donāt like the sharp needles in the eyes but I REALLY dislike the lasers!
I have been better with management since getting Dexcom a year and a half ago. A1C used to be around 8-8.5 and has improved to 6.3-6.5. Time in range us 80-90%. Tandem pump helps too, with nights now being way better than before!
Six months ago I got a vitreous hemorrhage and am mostly unable to see out of one eye. My ophthalmologist has been encouraging āit should resolveā but now that it hasnāt, I have an upcoming appointment to consider vitrectomy which Iām not too thrilled about but would like to get my vision back.
Heās also very optimistic, recently saying: āwith lasers and injections, none of my patients have become functionally blindā. So thereās that.
I agree that stress probably makes things worse. Blood pressure possibly as well.
But this is my only complication thus far after 30 yrs of IDDM. I NEED TO BE GRATEFUL TO BE ALIVE.
But that doesnāt prevent me from being pissed off about the diabetes.
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Donāt do that! No one, including you, chose to become diabetic. You can blame it on fate but that is a fruitless exercise, too. Better to spend your time educating yourself about your health concerns and making real world choices that can improve your health.
Cut yourself loose from all that blame and guilt. It is a dead end that will never resolve until you choose to resolve it. You may need some talk therapy and reading to help in that exercise but it is definitely worth the effort. Peer support is another great tool in your kit. Good luck!
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