Can retinopathy ever be controlled?
I have retinopathy in both eyes after 27 years of type 1 diabetes. My retina specialist has been working for two years to get the situation under control. I have had multiple laser treatments in both eyes, multiple injections in both eyes and a vitrectomy in one eye. The eye bleeds just never end. I'm now on a regimen of injections every three months to keep the new blood vessels at bay. The doctor says he hopes to one day get them under control, but you can't prove it by me. Anyone else dealing with this situation, years of on-going eye bleeds? I feel like I'm the only one. Very frightening and frustrating.
Replies to This Discussion
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Permalink Reply by Spock on -
I had a real struggle with this in the late 80's. I found an amazing doctor. It was so hard. Over 18 months, I had multiple laser treatments and one that I call THE RED LASER, which was awful.
After 20 some years, I still have threads in my vision. The ability to see from my left eye is diminished. I can still drive, read, all the things I need.
I found they would bleed after lasers and if I could just relax, it would be OK.
What about the credentials of your doctor? Maybe look at a research hospital? a specialist on retinopathy?
In my many years, retinopathy scared, and still scares me to my soul.
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Permalink Reply by Annabella on -
After years of side effects free diabetes I developed Retinopathy in my left eye in the mid-80s. I had laser treatments for several years I think the last one was in 1994. Since then my BG control has improved & now the eye doc tells me there is no sign of a re-occurance, & I have never had any problems with the right eye. I do see an eye doc annually & she keeps a close eye out for any signs in the right eye. So yes it can clear up or stabilise, it did for me.
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Permalink Reply by MegaMinxX on -
I see a pattern here. I also have retinopathy, and had laser treatments in mid-1980s and also vitrectomy surgery on my left eye. Since then have had only 3 additional small laser treatments. I get occasional floaters that last a few days to a couple weeks.
One thing I was told was to sleep with my head elevated (higher than my heart), which I've done for years. Also to avoid heavy lifting or straining, that can lead to more bleeds.
I agree with Spock, that you may want to seek another doctor for a second opinion.
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Permalink Reply by Spock on
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YOUR FLOATERS GO AWAY? My world would rock for that. I have had floaters since the original diagnosis. Doc says they absorb, but mine have not. No new leaks, but floaters have been part of my day to day life a long time!
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Permalink Reply by MegaMinxX on
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Spock - YES ! my floaters go away ! I do have what I call 'molecules' that float around, but they are like tiny tiny bubbles, most noticeable when there is bright light.
Sorry that yours have not absorbed. When I do get them, it drives me nuts !
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Permalink Reply by Cinderfella on -
I double checked my doctor's bio. I'm confident that I'm seeing one of the best in the area. He's a diabetic retinopathy specials and has affiliations with Harvard Medical School and Mass. Eye and Ear Infirmary. I'm fearing that its just me. I have always had the worst luck with diabetes. None of it has ever come easy. Sounds like your situation has been brought under relative control. Hopefully that chance still exists for me. I see the doctor again on Friday. Thanks for your input.
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Permalink Reply by Mishi on -
I have had D for 43 coming up to 44 years this year,Last year i had to have lazer done on my left eyes so count my self lucky in all my years that i went that long with out treatment for my retinas.I hope things get better for you and you are able to enjoy more Stability and your retina specialist sounds if he is good at his job.
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Permalink Reply by Terrie on -
I had PDR in my left eye, in the 80's, after 22 years with Diabetes. I had the laser treatments but did not need any injections(except for the freezing) or
Vitrectomy. I am thankful that I could get my sugars in a more stable area, as my Ophthalmalogist suggested. I have had no more retinal issues. Since I continue aging and still have Diabetes, I do get a bit nervous when I go for my eye tests every 6 months.Those are helpful ideas from Mega. I've slept with double pillows for about 18 years because of ra neck pain. Good wishes to you for an easier journey and recovery.
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Permalink Reply by Equestrian on -
The retinopathy will go into remission if you can keep tighter control of blood sugars. If you are not on a pump nor a CGM, try to obtain them. Test, make corrections, and limit carb intake until you see improvement. From a diabetic going on 48 years who was uncontrolled for 30 of those years, control can be had with commitment and persistence. Don't give up.
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Permalink Reply by jims on
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After 30+ years, when I got my blood sugar under control and took my metformin and looked after my health, my retina's cleaned up and the hemoraghes cleaned up and left.
That is Blood glucose under 155 average or lower - A1C 7 and under.
It is critical to get the dam glucose down. At elevated levels it rots out your blood system piping making it soft and jelly like and rotting attached organs. You are at risk for nasty stroke.
Been there done that - do not let this go on.
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Permalink Reply by Cinderfella on
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I'm curious as to what people are considering to be tight control. I have run between an A1c of 6.2 to 6.4 consistently for the past five years. I'm on MDI, I test often and correct often. It's damn hard for me to achieve this, but I've thought I was doing pretty good.
What kind of control have other folks had who have posted here and had their retinopathy gotten under control. Can anyone share?
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Permalink Reply by MegaMinxX on
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Cinderfella - it's not just the A1C by itself, but also how long you stay in the higher range. If you also have many lows, it can average out to a good A1C. I think low 6s are excellent for MDI !
When I first had laser and vitrectomy in 1980s, I was still on MDI, didn't know about carb counting, and used NPH+Regular. My A1C was 8-9, and my retinopathy/bleeding became stable during that time. You are certainly doing much better than I, so I wouldn't say A1C is the only factor.
I know you said you have a great doctor, but a second opinion might still be an option. I have found some doctors are more conservative in their approach and decide what they think is best. Others might be more likely to describe alternatives, pros/cons/risks, and let the patient be involved in the decision.
Maybe you could discuss that with your doctor - eg, what are the risks of more aggressive treatments to stop the bleeding.
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