Blind and Visually Impaired Community
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Proliferative diabetic retinopathy long haulers (self.Blind)
submitted by tatiemimi
I previously posted this on the T2 diabetes subreddit but received no responses. Wondering if anyone has been dealing with proliferative diabetic retinopathy for a long time, as in 5, 10, or 20 years? I received a Dx almost two years ago and wonder how people fare on the long-term. Thanks in advance for sharing your experiences!
niamhweking 2 points 1y ago
Can I hijack slightly and ask if D2 gets treated with diet, weightloss and lifestyle change, will the eye problem improve or does it just halt the deterioration?
tatiemimi [OP] 2 points 1y ago
I think, in a way, that’s the question I’m trying to get answered here, i.e. are there any meaningful interventions that can halt the disease at this stage or is blindness inevitable once you’re diagnosed with PDR regardless of lifestyle changes, etc. The only thing that the doctors have told me is to keep my A1C in check. They haven’t said what difference that will make since the new vessel growth can still happen when you’re well-controlled, particularly if you’ve been diabetic for a long time.
gunfart 3 points 1y ago
My doctors told me that I would not be able to stop it, the damage was already done and the only thing I could do at that point was slow it down with a vitrectomy and laser photocoagulation. I opted in for the photocoagulation because needles in my eyeballs freaked me the fuck out.
gunfart 2 points 1y ago
I was diagnosed with PDR about six years ago, when I was 30. My doctor told me that if I did not get it taken care of by the age of 35, I would be completely blind. I am now 36, and Doctor was absolutely right. It took about two years to start seeing minor changes, then everything went downhill pretty fast. My right eye went first, and slowly followed by the left a few years later.
tatiemimi [OP] 2 points 1y ago
Thanks for your reply! What exactly does that mean “take care of it”? My understanding is that since PDR is the final stage of the disease, that blindness is just a matter of time. Was the doctor implying that there was something you could do before 35 that would have prevented blindness?
blazblu82 2 points 1y ago
I've been at it for going on 3 years. So far, the prognosis hasn't been encouraging. I'm down one eye and the other isn't in great shape. Already has signs of tractional and vitreol detachments, blind spots and other garbage I get to put up with. The available treatment options aren't encouraging, either. Dr wants to do shots, but the shots themselves pose risks of detachment. Like with anything else, the sooner DR is detected and treated, the better the outcome. Mine was caught too late in the game and none of the treatments are going to help long term. I'm 39 years old, if that matters any.
tatiemimi [OP] 2 points 1y ago
Yep, I hear you. I had one Avastin shot in my left eye a few weeks post Dx and it just made the hemorrhage I had worse and I ended up having a vitrectomy a couple of weeks after that. Going in for laser on the right eye later this week.
blazblu82 3 points 1y ago
I won't do anymore surgeries unless it's a must. Lost right eye to a vitrecomy last year. Left eye has a coloboma which increases the risk of another failed surgery. Pretty much at the point of Dr watching my eye progress.
Interesting-Ad-5322 1 points 1y ago
I hope things get better for you. What are the causes of blind spots ? I have some in center vision and no one seems to have the exact answer to what is causing them.
blazblu82 1 points 1y ago
The coloboma is the cause for the largest blind spot. It's near the center. The others are at the bottom edge and caused by detachments.
xmachinaxxx 2 points 1y ago
Good question. I became legally blind from it only a little over 3 years ago myself. I hope you get some responses!
tatiemimi [OP] 3 points 1y ago
Thanks for your response! What was the length of time between your diagnosis/onset of noticeable symptoms and legal blindness, if you don’t mind my asking?
xmachinaxxx 3 points 1y ago
My onset of noticeable symptoms to officially being deemed legally blind took less than a year. I have great control of my sugars now but I still get retinal hemorrhages.
I was 40 yrs old and in a DKA coma in 2018 and that’s when it started. I don’t know how to paste it here but in my post history from a few months ago in the diabetes sub, I explained what happened if you want to read it.
I was 40 yrs old and in a DKA coma in 2018 and that’s when it started. I don’t know how to paste it here but in my post history from a few months ago in the diabetes sub, I explained what happened if you want to read it.
tatiemimi [OP] 3 points 1y ago
I found your thread! Thanks for sharing and sorry about your ordeal. There is such a range of experiences with this. I’m not sure if it makes me feel better or worse that everyone’s experience is so different, LOL.
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