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retinopathy misdiagnosis!!

poohtiggy

Well-Known Member
How can a so called "expert" give such misleading information? I had my first retinopathy check this July following type 2 diagnosis.I was told I already had early signs of diabetic damage to my right eye and I must have been undiagnosed diabetic for some time. I have been worried sick as I have already lost the sight of my left eye because of a retinal bleed and today I had to go for a hospital check up with my (left eye) consultant. I mentioned my diabetes and my worry about damage to my right eye as confirmed at my retinal screening and was shocked to hear him say "you do NOT have any damage to that eye" Apparently, what the 'retinopathy test' had shown was a scar that he said had probably been there for many years if not from birth. I thought the people who do these retinopathy tests were specialists? How could somebody make such a mistake, cause so much worry and call themselves a specialist in eye screening. I'm so relieved I don't have a problem but also am so angry that I have had so much worry for for all this time. I am losing trust in the so called "professionals" Anyone else had a similar problem or is it just my bad luck 'again'
 
Such a shame to put you through all this worry, at least you can now rest easy knowing that you've had it checked at the Ophthalmology clinic.
 
noblehead said:
Such a shame to put you through all this worry, at least you can now rest easy knowing that you've had it checked at the Ophthalmology clinic.
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Thanks Noblehead, I'm sure I'm not the only one to have such an experience. Already being blind in one eye I have coped with but the thought of complete blindness was very scary
 
I can sympathise here.

My annual sight check for the last two years has reported that I have slight retinopathy but when I go to the opticians for an eye test I have told him this but he says there is nothing in either eye.

Who do you believe is a question I have asked myself for the last two years.
 
I have always been led to believe that the annual check is performed with superior equipment than is used at the regular opticians. However the person using the equipment has to be able to interpret what they see accurately for either to be worth while.
 
JayCee - a quick question for you
when you go for the annual sight check do they put drops in your eyes to enable the doctor to look at the back of your eyes. ?
also -- have you had retinal photographs of your eyes done -- these tell the true story.

your optician will most likely not be able to "see" what they can with the drops in
 
I usually go for my scan then ~2 weeks later, I get the "there have been changes" letter with an appointment 6-8 weeks down the line, whereupon I attend a mid-day appointment with my usual eye doc who says "no change there, Fergus!"
Don't know if he means "no eye changes" or "screening are still c*cking up!"
 
 
Hi Poohtiggy,
This is an error that needs sorting out by your hospital. Your retinopathy team have not given you a clear descriptive diagnosis and that has caused you concern. I know what a worry sight loss can be as I already have eye problems (cataracts. glaucoma and retinal membranes causing tensions in one retina).
I have had superb care from my ophthalmic team over the last 18 months but now am newly diagnosed with Type II diabetes and my diabetic nurse says I must go for a retinopathy check. The appointment is next week. It will be interesting to see what they say!
Hope you are encouraged by the Forum's support and feeling better about things?
Val
 
I asked my optician about the equipment used and was told it's exactly the same.
 
Hi and thank you for your reply. The specialist I see at the hospital has nothing to do with my Retinopathy check I see him as I lost my sight in one eye due to a bleed at the back of the eye,very complicated! However he did put my mind at ease last week by saying what had shown up was a scar. I am still angry with Specsavers as the woman who did my screening actually said that I had damage to my eye due to diabetese. I have a very good specialist at the hospital who assured me it is a scar and nothing worse and prefer to take his word over an Optician. I am no longer worried about it but will not be going to Specsavers for my next eye test or Retinopathy screening. Welcome to the forum, you will get lots of help and advice here, it's very scary when you are first diagnosed, we have all been there but I'm sure you will feel differently once it all becomes clearer to you.
 
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CarbsRok said:
I asked my optician about the equipment used and was told it's exactly the same.
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Hi, what I was told was that the person doing the screening is specially trained. They take the pictures and forward them to an eye specialist who checks them in more detail.
 
poohtiggy said:
Hi, what I was told was that the person doing the screening is specially trained. They take the pictures and forward them to an eye specialist who checks them in more detail.
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So does that mean then that the opticians have all this fancy equipment and can't use it properly? Now very confused I am.
 
CarbsRok said:
So does that mean then that the opticians have all this fancy equipment and can't use it properly? Now very confused I am.
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Not at all, the equipment is the same but certain opticians are specially trained what to look for. It is a more in depth test as they actually take photographs of the back of the eye which makes it possible for them to note any damage, the photographs are then sent to the specialist who makes a final diagnosis. What upset me was the fact that the optician told me there was damage when in fact she should have kept her mouth shut and let the specialist decide, that is an independent specialist and not the one usually seen at clinics. She caused four months of needless worry for me and Retinopathy is scary enough without opticians adding more
 
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Hi Pohtiggy, I had the opposite to you. 3 opticians and 3 surgeons said no diabetic eye damage at all but one so called specialist ophthalmologist insisted I had sight threatening retinopathy and wanted to laser my eyes then and there before I had cataract surgery as the surgery would rupture the blood vessels I refused point blank to let her touch my eyes as had seen my own optician 6 weeks before and no damage. She had a complete hissy over the fact I refused her offer to blind me. Top surgeon looked at the scans said no damage and said any tom **** or harry could operate on my eyes. He did the first surgery fantastic result (Cataracts) Another surgeon did the 2nd op same result and no eye damage before or after the surgery.
I then went to vision express for eye test once eyes settled and sort out my glasses, no damage to be seen anywhere. They couldn't sort the varifocals out so asked for money back went to spec savers who did a complete retest and took photos again and they had a very good look and yet again no damage could be found. One year down the line I have full vision with no problems.
 
That is such good news, glad your cataract surgery was a success it's amazing isn't it? I had a good experience one time at vision express followed by a bad one. Have been with Specsavers the past five years and one optician actually spotted the problem in my left eye and sent me direct to hospital, sadly it was too late and I lost my sight. However, my recent experience has made me think it's a lottery and you get a good one or a not so good one, but that makes having a test very risky!
 
Thanks, it's scary isn't it? You would think they would just do their part and leave the result to a specialist. Anyway I am satisfied now a consultant has told me I have nothing to worry about at present, such a relief
 
I was told a decade ago by an optician that They suspected something was wrong with one of my eyes and they wrote to my gp to get me in with the eye clinic at the hospital as an emergency.

Nothing was wrong.

A decade on and still absolutely nothing wrong. Perfect everything. Did have mild background retinopathy listed on nhs results for a couple years but this has not been listed since I got my pump 4.5 years ago.

I have reduced the swings in my bg levels, and still once in a while go massively high due to a set or pump failure. However, those once in a while huge swings have undoubtedly been over ridden by keeping my BG levels under the 2.8 SD on the pump.
 
Hi Poohtiggy,
We all seem to have had different experiences with the standard of retinopathy screening. Mine has been arranged at my local hospital, Wycombe General, where I see the Ophthalmic consultant and her team at a regular clinic. I have had retinal screens (in great colours) already, helping the consultant to diagnose and demonstrate to me the problems in my eyes.

The pictures are transmitted from the screening machine direct to the consultant.
On Wednesday I shall keep quiet and just see how the retinopathy screening process works and what problems the people there can tell me about!
 
I have my eyes checked once a year by my optician and then in November by the screening folk at the Dr's surgery, just had it done all clear I'm happy to say "Your test result showed that you have no active retinopathy. This means you are at very little risk of sight-threatening diabetic retinopathy at this time"
 
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