The Beginning of Diabetic Retinopathy

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I went to the eye doctor this morning for my annual check up. I didn’t go to my usual doctor, but to a doctor at the diabetes clinic. I decided to go there since I always end up waiting for at least an hour in my regular doctor’s office. And since I didn’t feel like I had anything to worry about having had no signs of diabetic retinopathy before, I didn’t feel like wasting half my day.

 My Dilated Eye - Diabetic Retinopathy?I got to the clinic at 9:00 a.m., on time for my appointment, and had drops put in my eyes. I waited for 20 minutes and then went into the doctor’s office.

The doctor was in his early 40’s, tall, thin with a long ponytail. Not at all like my regular doctor. He greeted me, asked me a few questions and told me to sit down in front of the contraption used to look inside my head. 

I put my chin in the chinrest and the doctor peered into my eyes, shining a bright light. He looked around for what seemed to be a long time. It felt uncomfortable, almost painful.

After shining the light into both of my eyes, he examined them one at a time. I really wanted to close my eye. I kept blinking trying to keep it open; looking in the direction the doctor had instructed me to. Then he moved to the other side again shining the light.

“You have the start of diabetic damage in your eyes,” he said to me as he got up from his chair behind the machine.  There was no gentleness about it, no cushioning the blow.

“Really?” I replied (like an idiot).  I was stunned by the news, and totally unprepared for it.

“How long have you had diabetes?” the doctor asked.

“A little over 10 years,” I said.

“Hmm,” he said shaking his head in a knowing way as if I was on schedule for diabetic retinopathy.

“You should come more often, every six months,” he said.

“Okay,” I said as I got my stuff and headed towards the door.

As I walked out of the office and down the corridor I felt the pressure in my chest building. I felt like I wanted to cry. I had the feeling of unfairness, the kind my children have when they feel wronged. Diabetic retinopathy, me? I work so hard. I do everything right, well at least I try… My A1c is good.

I’ll go to my regular doctor for a second opinion. Just 14 months ago he told me things were great and gave me a clean bill of eye health. Maybe this doctor is wrong.  Hopefully. 

The decision to get another opinion didn’t make me feel any better. I walked home, a short 10-minute walk, with my pupils dilated, not seeing very clearly, kind of in a daze.

When I got home Jess asked me how it was. “Not the best,” I said.

“Why? What happened?”

“The doctor said he can see signs of diabetes damage in my eyes, the beginning of diabetic retinopathy”

“That doesn’t make sense,” she said. “Last year the doctor said everything was great. You should get a second opinion. Go to your regular doctor.”

I imagine I will get a second opinion. Maybe I’ll go to a retina specialist. But I have a feeling it won’t change much.  I mean, what are the chances a doctor would see retinopathy that wasn’t there? Diabetes isn’t fair. 

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Comments (11)

  1. Scully at

    This is what I’m talking about. :( I wrote something about this awhile ago. About how sometimes even the well managed diabetics suffer complications and it’s simply NOT FAIR! keeping a good A1C and a way healthier than normal lifestyle certainly helps but it doesn’t save us from complications.  

    Not fair indeed, totally and completely NOT EFFING FAIR!    I’m sorry. :( 

  2. I’m with Jess — second opinion.
    Coincidentally, I had my annual appointment with an ophthalmologist yesterday. I usually get more detail than you did with the comment on ‘start of diabetic damage’ — what does that even mean? What’s their baseline for that? Has he compared it to previous images taken of your retina? What’s the degree of damage, etc.? And, if you do have a start, it would be treated.
    Btw, I have a normal abnormality in my eye that can look like a problem to someone who doesn’t do the complete exam: the photographs of the retina, the vision field test, and the dilated eye exam that you had.

    I would be upset, too, if I heard what you did, but it also sounds like you had a cursory exam and should go to someone who can give you a deeper profile of your eyes. You have had a great A1C for your whole time with diabetes — this doesn’t all add up to me.

  3. I hope your second opinion shows nothing but it definitely wouldn’t hurt to get one.  I would also recommend seeing a retina specialist if you have one in your area.  That is where I was sent last year when my ophthalmologist saw a spot near my macular.  It turns out the spot was from leaking vessels.  Very minor because they caught it early and with one treatment it’s been stable for a year.  It started within just 8 months.  But I’ve also had diabetes for 30 years.  The best thing you can do is keep up with the appointments – if they recommend every 6 months I would definitely do that.  And I wish you the best!    

  4. Sheri Z at

    Definitely worth a second opinion and more info.  I’ve had retinopathy for years.  Type 1 for 30+.  Suffered a vitreous hemorrhage in my eye out of nowhere last year. It was horrible and I really thought I was going blind.  My A1c was decent and my eyes had been checked within the year.  Eyes are scary!  Do everything you can to protect them.  Sounds like this guy just didnt have any bedside manner.   If he says he is “starting to see something”….he might just be trying to scare you.  I’ve met doctors like that.  But…maybe its worth it.   Good luck with this.  

  5. I’m sorry you got slammed with that news, Mike. Not something we ever want to hear.
    Yes, I’d also want to make sure this fill-in doc is correct by getting a 2nd opinion, even from someone more along the lines of a retina specialist who sees these things. That’s what I did, actually and my eye doc recommended that in times when he’s seen early retinopathy.
    The first time I ever heard… was pretty much the same as you described. Being totally unprepared, after hearing for so long that all was OK. But who knows why and how it happens. Getting tighter “control” actually helped and it dissipated a couple times, but did return about a year ago.
    Anyhow, good luck on your end. Hope the 2nd opinion yields a different finding. Best your way.

  6. Catherine at

    Ugh, ugh, ugh. This has truly been a crappy couple weeks for you, Mike. I’m with everyone on the second opinion, and on asking for more detail on what he’s basing his diagnosis on. Knowing how well you take care of yourself, this doesn’t add up. I’m really sorry.

  7. Michael Aviad at

    Hi Everyone, thanks for you supportive comments. I’ve decided to get a second opinion, probably from a retina specialist but it’s going to take me a while to get to it.
    I have bigger fish to fry this month and I doubt waiting will make any difference. 

  8. keith at

    That’s where forum’s like this are really important for our own care & quest for knowledge & info. I can’t imagine a doctor just giving out the info & seemingly nothing more than ‘ya all come back now. 
    Do wonder what the damage looks like
     
     
     

  9. Karen H at

    It isn’t fair, and you should get a second opinion. But just in case it was an accurate diagnosis? Don’t despair. I was also crushed when they found “minimal background retinopathy” in my eyes. I sobbed leaving the office and all the way back to work. But when I got back to a computer, everything I found basically said eye damage isn’t a matter of IF, it’s a matter of WHEN. I’d been at it for more than 15 years at that point, and the percentage of T1 diabetic veterans with some sort of eye damage was well over 50% for that duration of the disease.

    It’s terrible, and it’s not fair, but you’re absolutely not alone. 

  10. Timmie at

    I totally don’t believe the matter of WHEN.  My doctor told me not to deal with diabetes by different milestones of the things that could happen to me.  Best advice I’ve ever gotten. He said that doctors often will tell patients “well, you’ve had diabetes for this long, that’s when this terrible thing will start happening.” Complete BS and laziness on their part, I believe.
    Good luck and stay posititve.  I’ve had the eye scare once, too, but resulted in nothing.  Bet the same for you!

  11. Danie at

    Great read! I can really relate to your situation. I also have had the news of some changes and I am waiting on a second opinion.
    Initial reaction was of shock and then logic, after all a second opinion may just bring nothing to light!
    If either of us need treatment then we should be thankful that it was detected very early on and treatment can be done :)
    I’ll keep my fingers crossed for you also, GOOD LUCK!
    Best Wishes,
    Danie.

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