proliferative diabetic retinopathy - need help please :(

I am beaten. Sad and have no words to explain my feelings. This June I was diagnosed with severe PDR. High risk proliferative diabetic retinopathy. It all happened after I tightened my a1c control in a year. Went from 10 to 4.8 mmol. I felt great. Everything was going well. Until one day in June I noticed an empty spot in middle of my right eye. It was very weird. Long storey short. Here I am now. 2 months in. 2 laser sessions in each eye; 2 Avastin shot in each and honestly I don’t see an improvement. At least I don’t feel it. I have a ‘dangly floater - string ‘ from from top of my eyes to bottom. Doctor is aware of it as well.

I am tired of the whole thing. I test my eye every second and can’t keep doing that :(. So sad how you get control of your sickness then your told things got worse. It’s like if you quit smoking and then a year later you get Lung cancer. :(

Any words from the world here?
Has any one experienced this ?
Does it get worst when treatment starts and then better after ?
Will I go blind now and it’s a done deal? Just looking for anything here My vision is dark /blurry when I wake up but gets better through the day. Not sure if anyone has his through this as well?
Will the empty spot in vision go away ?

Thank you all

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Are you going to a retina specialist or ophthalmologist ?

I had laser treatments in 1980s, and first vitrectomy in 1986 (with hospital stay), then other eye in 2004 (office 1hr procedure).
Both eyes healed well, but took some time. My left eye was first, and have limited vision, but right eye was done with more modern equipment and recovered quicker.

Call your doctor and get answers for what you are seeing.

Maybe if you sleep in upright positive (recliner?), you will get less change overnight. I recall going from dark to bright light took much longer to adjust, for example from movie theater to outdoors. But I recall several weeks for mine to settle after the procedures.

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Thank you so much for your reply. I am seeing a retina specialist. Glad things worked out for you and happy to hear you are doing well.

if you don’t mind me asking. Did you also have proliferative diabetic retinopathy?
Is you visual acuity good now after these years of treatments?
How many laser treatments have you had? any injections?
Are people still able to drive after a few laser treatments have been applied?

really appreciate your time.

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I also had eye injections of Avastin but it did not help at all. I had leaking right at the center of the retina, a dangerous area, but the Dr did not think it was caused by retinopathy, maybe because my a1c was very low (I don’t know!). Finally, the retina specialist gave me injections of Eylea which began to work immediately. Last injection was more than a year ago. I now have mild retinopathy and now (after the Eylea injections) I have a floater, too, which apparently is a side effect of Eylea. My visual acuity is still good, 20/25 or around there but it has gotten a bit worse since the injections. My Dr does not recommend doing anything about the floater. He says that they sometimes go away on their own. I had this one for about a year. Good luck getting medical attention.

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Mike Hoskins of Diabetes Mine is dealing with eye problems and maybe his posts will be helpful for you.

And an older post by Mike:

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if you don’t mind me asking. Did you also have proliferative diabetic retinopathy?
Yes. Was scheduled to have laser, but equipment problems postponed for several months. This was mid 80s, after 20 years T1D. Soon after laser, left eye became very cloudy, and then they recommended vitrectomy, but to wait 6 months. (Later told by new dr that was bad advice!) After vitrectomy, took several months to settle and for my eyes to focus together. About 3 months later I could drive without seeing double!

Is you visual acuity good now after these years of treatments?
My vision in left eye still not great, but right eye basically stable the last 25 years. I pass driver license test based on right eye vision. Left eye helps with depth perception, and my brain is used to it!!

How many laser treatments have you had? any injections?
No injections, they weren’t used until more recently. Most laser done in 85-95,and was significant, with older technology. Only minor “spot” laser a few times in past years.

Are people still able to drive after a few laser treatments have been applied?

My driving was limited after initial bleeds and delays due to equipment failures, and after vitrectomies. But still drive today.

With modern equipment today, and avastin (not available in my early days), and newer diabetes tools, loss of sight is greatly reduced, and prevented for those that do regular eye doctor appointments.

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Thank you again – excuse my ignorance. how does a recliner help with such situation?
What change happens overnight?

Thanks,

My doctor suggested it, as there was still “stuff” settling and re-absorbing after the procedures. Keeping more upright (recliner) helped.

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There’s plenty of evidence that a rapid tightening of control can, paradoxically, worsen diabetic retinopathy. It’s often called “early worsening.” One of the early major studies was published in 1982, and the 1987 Diabetes Control and Complications Trial found that DR worsened among participants when a higher A1c was reduced during the first six months of the trial through intensive insulin therapy. This is what happened to me when I started looking after myself better. My A1c went down, my daily control was much tighter, and bang, I got bleeds and was told I had proliferative retinopathy.

But the good news is that it generally stabilizes after that, given some combination of laser treatments or Avastin or similar injections. I was treated for probably three years or so, and had a vitrectomy in 2001 because coagulated blood didn’t re-absorb. There has been no retinopathy in my eyes for a good 20 years. And treatment is much more sophisticated now than it was 20 years ago!

Here are two articles, a 1985 study and a comprehensive review from 2018.

https://dom-pubs.onlinelibrary.wiley.com/doi/full/10.1111/dom.13538

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Agree, and what happened to me.
I was also started on insulin pump and no longer using NPH+Reg, which resulted in accelerated path to lower BGs and A1Cs.

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Thank you. Glad you are doing well.
Is your vision okay now ? Any major issues ? Seriously damage ?

Thanks for all your comments.

I believe this was the case with me, too. Only after a year or so after finally taking control and reduced my a1c, I had urgent eye care needs!! Ironic, yes.

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I have often wondered about this. My eyes are good bot after my 30 year anniversary my retinal photograph was tagged with some blood vessel growth. They said not to worry but sometimes new vessels bleed more than old ones. So anyway I really tightened up from mid 6 a1c down to 5. And most of my life I was around 7.
I Often wonder if I should just stay in the 7 range if that’s what my bodily likes.
I have orthostatic hypotension since I got better control bit no one can explain it. So I feel like I’ll pass out when I stand up fast.
I take no meds other than insulin.
I need to get in and have my retinal photos taken again but I hate going in with all the covid stuff. I also hate the stress around waiting for results.

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Hmm, I have this, too. I’ve never thought that it could be related to improved blood glucose control, so interesting idea. I’m not 100% sure mine coincided with better control but I’ve had it for a number of years. I also have low BP in general, but the dizziness caused when standing up is not just regular low BP!

I know ophthalmology appts can’t be done virtually! I had one in early Sept in Manhattan. They were very careful with PPE and actually they streamlined the whole experience so as to have as little human contact as possible, such as checking in remotely, no waiting in the lobby, etc. Much quicker than the usual appt.

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Yes to be fair. I have never tolerated ace inhibitors because they made me have low pressure and I felt like I was choking so I saw no purpose in them. My bp was always borderline at the doctor but low at home. I did a 24 hour pressure monitor and my average was 115/70.
When I stand up and check it it will be 110/55.
So I really need t be careful. I still don’t know why.

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Same here. I asked my Dr recently about ACE inhibitors, thinking it might be good for the kidneys, but she advised not to take them since my BP was on the low side, typically 100/60. She said ACE inhibitors could make the BP too low.

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Does anyone have any experience with vitrous hemmrage black dangley floater (from bleeding)? they are so annoying … do they go away over time? thanks

Those dangly floaters are usually coagulated blood, and in the vast majority of cases they’ll eventually get reabsorbed and vanish. Rarely, they don’t, though, and so routine surgery called a vitrectomy is done to remove the “dirty” vitreous gel and replace it with saline. Most vitrectomies these days go off without a hitch, but they can have complications: they can speed up development of cataract (easily dealt with) and they sometimes result in a detached retina, which unfortunately often means more surgery. The more surgeries you have, the more your vision can be compromised.

But, again, in most cases, the blood clears and vision is normal.

My vision is fine now. I did eventually lose the vision in the eye I originally had a vitrectomy in, but that loss was only very distantly linked to diabetes.

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@PDR_T2 - PDR is always a concern, and it’s been discussed on multiple threads on this site. Try searching the site (click on Magnifying Glass at top right of page) for terms like vitrectomy

Here’s a Thread that covers a lot:

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so happy for you guys. Glad to hear positive news. Don’t stress it. you are doing well … just keep an eye on it :slight_smile:

Was your eye issues prolifratove if you don’t mind me asking? Thanks,