Doctor, Doctor, It Hurts When I Do This

Hi, it’s Linda (Sue calls me Lin).  I’m hijacking Sue’s journal. I need to vent. Did the title grab you?  It’s the first line to a joke that ends with the doctor saying “Then don’t do that!”

First, I do not have AMD.  My dad had it so my risk is higher than ‘normal’ so I’m concerned about developing it in the future.  I’m here because of and for Sue. And now for you.

I went for my annual eye exam with the doctor who has been doing mine for 25 years.  He’s a great guy, a great doctor.  He helped me through a tough time last year when I had cataract surgery & developed PVDs (Posterior Vitreous Detachment) in both eyes which is common.  I also have some crazy thing on my corneas called map dot fingerprint dystrophy.

I’d gone to my appointment armed with a printed page from our website to give to him with the hope he’d eventually take a look at it, maybe even post it on their website.  Granted, he was busy but in the past, even when he was busy, he took the time to talk to me.   After the exam was over, after he told me that my macula was healthy, he asked how I was doing.  I started “My friend of 40 years who is my age has AMD and a few months ago her vision became so bad that she had to quit working and driving.”  He stopped me with “I don’t want to hear about that [AMD]..it scares me!  My mother went blind from glaucoma from the shots!” I didn’t know what else to say but “I’m sorry about your mother’s vision.”

OK, I was not there to be checked or treated for AMD.  He had other patients after me.  I decided not to leave the website paper with him.  Maybe if I didn’t know now what I do about the disease his reaction wouldn’t have bothered me but it did.  I’d looked at his rack of brochures & the only one on macular degeneration was from the company that makes the AREDS/AREDS2 supplements that many doctors recommend (I have LOTS more about supplements in another post; I’m working on expanding it, actually).  What’s up with that? Are there no other handouts? Since the supplement company is making money from what the doctor recommends, I’m sure they sent him the brochures for free.

As I drove home, I kept thinking about why his reaction bothered me so much. I figured it out. When I started to do research for Sue and for this website, I kept hearing about the visits people had with their eye doctors when they first got an AMD diagnosis.  Here are just a few statements with a brief comment from me in brackets:

  • “He told me that it would progress slowly, maybe take 10 years to get worse so don’t worry about it.” [every person’s case is different & there is no definite time frame.]
  • “There are vitamins that you can get that are expensive but buy the cheaper ones.” [The subject of vitamins is more complicated than just going by price.]
  • “Take these ‘eye vitamins’ and also take a senior formula multivitamin.” [TOO much of some vitamins/nutrients CAN be harmful!]
  • “She didn’t tell me much, she just said that it’s an age thing.” [Even though AMD is more common as we age, many people get it when they are much younger; some people never get it.]

My eye doctor actually said to me today “you don’t have macular degeneration…yet.” Is he saying that I will eventually get it?  I know better, thank goodness.

Basically, patients are getting little to no information and downright inaccurate information from their eye doctors.   By navigating our website, you will find that we explain why each of statements are just not correct!

Which brings up the ‘head in the sand’ issue.  My eye doctor voiced his fear of the disease & I believe that he was doing that to me as Linda, not to me as his patient.  I hope that for his patients who DO have AMD, he is supportive & will refer them to someone who can educate them if he chooses not to do so.   But to know that HE is afraid of AMD wasn’t very comforting.

At least in the US, people are coming out of their eye doctor’s office thinking:

  • “I have nothing to worry about because my doctor said not to worry”
  • “This is too scary, I’m not going to think about it”
  • “I am so confused, where do I go to get more information?”

I’m guessing that many of you had that last one and that’s why you are here!

So tell us what YOU were told when you first got your diagnosis? Just leave a comment below.

Next: good stuff cheap

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4 thoughts on “Doctor, Doctor, It Hurts When I Do This”

  1. “You do have a lot of moderate-sized drusen, but don’t worry, they are in the arches so they won’t worsen your AMD.” Oh, yeah? Then why did I lose another line on the eye chart last time? Eh? Answer me that, Doc.

    1. Hi Nona, Linda here. I hope that you did ask your doctor that. I think sometimes we hold back those important questions.

  2. It was a Sunday in the fall about 6:30 am or so and I was eating a quick bowl of Cheerios with milk in the kitchen. I was going to try to make it to early church. I looked across the room, could not see properly, and thought I’d somehow spilled milk over part of my glasses. Took off my glasses. No, no milk on glasses. So I squinted and looked out of one eye, then the other. My right eye had a large grayish white foggy opaque spot that looked like a sombrero or a flying saucer. I was living alone, was scared to death, so I drove myself to the emergency room with one eye okay and seeing well. ER tested me for two minutes or so for stroke, triage style, smiled when I said I’d driven myself, then put me in a room to wait. I overheard aides or nurses talking about hysterical blindness. The ER doctor came back and said, “I can’t see anything.” I told him, “That’s the problem. I can’t see anything either.” I was so frustrated. They didn’t believe I couldn’t see out of that eye. A friendly male aide/nurse came in and cheerily said I’d be watching football with no problems that afternoon. Then they just kept asking if I could see and made me stay and wait and wait. “I still can see only around the edges,” I told them. ER personnel kept waiting for the blindness to go away and kept me sitting on an examining table. After a long time, the doctor came back, seemed then to believe me, and gave me the name of a specialist to see on Monday. I drove home scared and slowly, but I had one good eye, so no problems. On Monday that particular doctor said she could see nothing, but took me very seriously and told me to go to a retina specialist and that he was expecting me that day and not to fail to go. It was way across town. He told me I had had a stroke in my eye, he thought, but I had better get an Avastin shot right away in my good eye. (He did lots of testing first, almost an entire afternoon of it.) He said my blind spot cut diagonally across the macula and I was lucky. I could have lost the entire macula vision. Later, he kept telling me to continue with the shots or I could go blind. I didn’t believe him, as another doctor disagreed and said we could wait and see and then get laser surgery if it was needed. I hated the Avastin shot, darn fool me, so I waited and eventually, a year or two later, saw less and less out of my “good eye.”

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