So, I have Proliferative Diabetic Retinopathy in my right eye, and severe NPDR in my left eye. I went to see a retinologist and he recommended I get intra-vitreal injections (Anti-VEGF) as soon as possible to avoid any disruptions in vision/worsening of vision. My eye story started in Dec 2018 when I coughed violently from bad sickness and the next day woke up with a big fat black blotch in my vision (right eye). So of course I went to go see the retinologist.
Late Dec 2018: Saw the retinologist, says I should get Anti-VEGF injections asap. I decided to wait to see if improving BGs can heal my eye itself (since past years a1c has been 10s/11s, now 7s (following Bernstein since mid 2018). *Goal a1C is 5s.
Early Jan 2019: Saw another retinologist who proposed I can control blood sugars better and it can possible heal itself. I decided to work on improving average BG to try to self heal my eyes.
Late Jan 2019: Some blurriness occurred, new to me, scared me, I went and saw the 1st retinologist, who again recommended antiVEGF.
April 2019: 1st retinologist says start antiVEGF asap, I said āLetās wait a few more months.ā He said my anatomy is getting slightly worse.
June 2019: I scheduled a visit with his this Friday (6/21/19) to start eye injections.
Honestly, I donāt want to get the injections because of 3 things:
You canāt stop once you start. If you do, vision typically gets worse off than when you started.
Thereās a slight risk of infection, even more a smaller risk of an infection (b-something) that causes complete blindness in that eye).
Thereās no guarantee that it will work at all anyways.
I really donāt mind visiting the doctors, Iām used to it, but I just donāt want an invasive procedure done that may jeopardize the health of my eye (or am I crazy?)
Also, my endo (AMAZING ENDO, keto supporter, low carb advocate, etc.) recommended me the get the injections without even thinking about it. She said āsave your vision!ā
Any thought, anyone who has had this? Anyone who has lived with and REVERSED PDR/SNPDR with control BGs alone???
Whoops, forgot to mention:
The big black blotch in my vision (retinal boat hemorrhage) has almost completely gone away on its own. Itās turned into this furry/floater-y type thing blanket over my right eye in the center/upper right.
Seems thatās a good sign, that my body is getting rid of it slowly but surelyā¦?
Also A1C was in the 9s, now in the 7s from last Dec.
Hi Trevor @ketoeater, I can understand your hesitation and reservation about receiving, what in my opinion is, proper and recommended therapy for helping you encounter total blindness; yes, every procedure carries risk. You are not experiencing anything I have not experienced over the years and last month I read two lines with my right eye that I never before was able to read.
Some background: in November 1966 [after six years of ignoring MY diabetes] I was diagnosed with ādiabetic retinopathyā the worldās leading cause of adult blindness. I was offered two options to ātotal blindness within two yearsā, they were 1) removal of pituitary gland to slow down vision loss, and 2) volunteer as a guinea-pig for treatment under a modified weapons grade ruby LASER - a process called āPhoto Coagulationā. I accepted all the risks of never-before-used LASER in favor of being able to see and 53 years later Iām still reading, driving and doing anything I want. Yes, Iāve had thousands of LASER burns on my both retina over the years.
Fast forward to November 2018. shortly after lunch on a Tuesday while riding my bike to the gym for a usual two hour work-out, I noticed a small āfloaterā in my right eye so I returned home; by supper-time I couldnāt see anything with that eye. I notified the ophthalmologist and decided to wait a week before examination - still no clearing or ability to see. At that time we decided upon injections of Avastin [in the eye] every eight weeks - by late January I was given permission to resume driving and by late May when my OD vision gained the two lines we decided to space the injections at twelve week intervals.
Improving your glucose management will probably not in itself fix your retinopathy - based on my experience. Over a recent 20 year period I maintained HbA1c between 5.9 and 6.1 with only two exceptions. My suggestion, keep asking questions and if needed take the risk. Each of us is different and just because my results have been positive doesnāt guarantee anything for you or anyone else. GOOD LUCK!
Thank you for this. I really appreciate it. I actually secretly hoped you would answer, seeing as you are one of the more experienced ones of us!
I will probably go ahead with the injections, as they seem to be doing very well in the past 5 years. Rates of success are in the 90%s, so thatās great!
Trevor I got retinopathy in the form of wet maclear degeneration in both eyes directly related to being T1D. Now my vision went from 20/30 ish to 20/400. To give frame of reference I went from reading glasses to I couldnāt see my own face in bathroom mirror, when I leaned in I had to have my nose touch the glass before I saw me. Very scary. It happened over 6 month timeframe. Iāve been taking injections nearly monthly for about 4 yrs.
itās worth it!! No problems at all other than some red eye for a few days. The injections suck but itās well worth it. Iām almost back to driving again. Good sugar control helps a lot. Me 5.7 to 6.0. I consciously raised it to help stop night drops. I have 20/40 in my right eve and about 20/70 in my left eye. Iām waiting for stabilization to be approved to drive!
Itās worth it, some pain, but worth it!
Charlie
I accompanied my husband for monthly shots in his eyes for 10 yrs. they helped enormously. I was a little freaked at the thought of poking a needle in his eye, but he said it really didnāt hurt, and he would have done it even if it did. I encourage you to go with this program.
