AMD is the loss of central vision. Of course the black patch moves with the focus.
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Well, a bit of a downer today. I am 74 years old, have wet AMD in my right eye for which I have had 27 injections so far. But the problem there is that from an accident on Good Friday 1977, the cornea is deeply scarred causing very blurred vision.
So for 44 years I have relied on my left eye to live a normal life - until five years ago when I went to the eye hospital because my then optician said I had cataracts. The consultant there tutted and said, "Who told you you have cataracts?"
"Yes, slightly, but your main problem is macular degeneration."
My heart sank because my mother had this, so I knew what was coming. This is when the injections for the wet AMD in the right eye started. But the left eye has dry AMD, there's no treatment available but it does usually progress only slowly.
And so life went on. I was still able to drive and because I am a carer for three people who rely on me in their different ways, that was good. It got to the stage where I was getting new spectacles about every year to maintain the sharpest vision possible in the left eye.
Over the last few months, I was aware that things weren't as good as they had been. I can still read a number plate at 20 metres when the light is right but I was not completely happy about it.
So today I went to my trusted optician at my local Specsavers who is well clued up about macular degeneration. She told me that my main problem now was the cataracts that had deteriorated.
How much longer will I be driving?
"Yes, because I don't have a spare eye in case it goes wrong."
"You would get a marked improvement in your left eye vision, but as with everything, there is a slight risk. About 1 in 1000 goes wrong and then you would be left with severely impaired vision. As for spectacles, there is nothing I can do to improve your vision with new lenses. It's as good as it gets the way things are."
We discussed this for a while. I decided that perhaps the trigger would be when I could no longer drive - then it might be worth taking the 999/1000 chance.
She said, "You are just above the legal threshold to drive at the moment, but take it steady."
I told her was aware of this (I am a police trained advanced driver) and that I tend to stick to about 50 mph except perhaps on motorways where coming across a cyclist dressed all in black is much less likely.
So there we are. I will discuss this with the consultant at my next eye hospital appointment in May. Until then I have some thinking to do...
It was a while since my post and also since my last visit to the eye clinic and in the meantime the lockdown had been imposed. I was due on 4th June for a further visit and possibly a further injection of Eylea. Was the appointment still going to be kept? When I phoned I received the reassuring, "All macular appointments are still running."
So with hand sanitizer in my pocket I drove to the clinic with my wife, who would have to drive me home. In the car park we put on our face masks and went into the clinic, rubbing our hands with our get as we entered. There was a plastic screen round the reception desk and a tape barrier in front of it. They asked my wife to leave because they wanted a few people as possible in the clinic. So she went back to wait in the car.
After about a twenty minute wait I was taken into the little operating room. I was told my 'wet' right eye was still dry, no leakage, so I would get an injection and then return after fifteen weeks, which would mean mid September.
After that it was all normal. I was asked to remove my face mask and then my eye area was wiped, the covering put on and loads of drops put in until I couldn't feel the clinician pressing my eye. In with eyelid clip and the injection. In and out quickly as usual. There once more was my private lava lamp, the clip and covering removed, eye area cleaned and that was it. I had a black circle at the bottom of my vision which I knew to be an air bubble at the top of my eye (The brain inverts the retinal image remember) so I wasn't worried. They are common.
My wife drove me home (she hates driving my car) and by the time we got home the lava lamp had dispersed. My eye was sore later so before bed I took a paracetamol and slept well. I am writing this the following morning and it is still tender but that will pass. I am just thankful for the NHS and its continuing care in this Covid crisis.
I went to the eye hospital on 27 November 2018 for a regular appointment. Straight into retinal photography for my retinas to be photographed. I hope they were smiling! From there to the sight test. My damaged right eye (it has corneal damage remember) was pretty hopeless as usual but this time I wasn't allowed to use the pinhole which made it even less good. My left eye was slightly better than last time. This is the third visit in a row that has seen an improvement in my left eye which has dry macular degeneration.
Then lots of drops and off to the consultant. He confirmed that my dry left eye had improved vision and while not perfect with a few little bumps, the retina looked good enough. Then he said that my wet right eye was now dry! No sign at all of those nasty stray blood vessels. He said that a cataract operation might improve my vision, but they weren't bad enough at the moment. The level of cataract is the same in both eyes and still classified as mild. He decide to give me an Eylea injection in the right eye and then he would see me again in 12 weeks. Then it was along the corridor for the injection, my 19th, which was pretty normal. My lava lamp was back a a couple of black floaters. By morning they had gone and as I sit and type this vision is as it was and only a slight soreness in the right eye from the injection.
The continuing improvement in both retinas is good news of course. I can carry on driving (although I try to keep to daylight). I am still on my AREDS2 tablets of course but I have to note that the improvement in the scores for my dry left eye started when I began taking the 25mg of Sildenafil each day. Although most widely known as Viagra, remember that Sildenafil was originally developed as treatment for heart and strokes to improve blood flow. Improved blood flow to other organs was an unexpected (but very profitable) side effect. I'm not complaining!
It's been an interesting few weeks with regard to macular degeneration. First there was a small study in the USA that indicated that regular small doses of sildenafil (ie Viagra) had a beneficial effect on dry macular degeneration. Some participants found the decline in vision stopped and some even experienced an improvement. So guess who started taking a daily 25mg of sildenafil! And of course it has a beneficial side effect! Lol
Then there was the news that Avastin would be approved for the treatment of wet AMD in the UK. It is apparently equally as effective as Eylea and Lucentis, the manufacturers of these had opposed the use of Avastin. But I was shocked at the cost of these drugs to the National Health Service (NHS).. Each injection of Eylea costs over £800 ($1070) and Lucentis costs over £500 ($670) a time. Avastin costs just £28 ($37) a time. I have now had many Eylea injections into my 'wet' right eye. There is no way I could have afforded these so thank you, NHS!
I went to the eye hospital yesterday for another injection yesterday into my wet right eye but of course they also do an eye test. My score for my dry left eye, the one I use as my right has corneal damage, showed a 10% improvement, lifting me well clear of the legal driving threshold here in the UK. Is that a normal random variation - or is it the sildenafil? With no obvious adverse effects of it, I will keep taking the sildenafil.
I noted that when I was being prepared for the injection, that they were still using Eylea. It seems there are still some legal loose ends to be tied up before Avastin can be used. And even then it will be clinical decision made for each patient rather than solely on the basis of cost. Don't you just love the NHS?
So then I got my injection, quick and almost painless and there once more was my private lava lamp again. It faded quickly though and within a couple of hours vision was normal.
Back again at the end of November.
It's been a while since I updated about my macular degeneration, but it's time to catch up, especially as there is some good news to share.
This has been an interesting week as far as my macular condition is concerned. On Tuesday I saw the consultant. They took all the usual photographs of my retinas, as well of course as testing my eyesight. My dry AMD left Eye has not deteriorated which is good because that is the one I use. I am still well above the level required to drive. Keep taking the AREDS2 tablets.
In one sense, there was even better news for my right eye. This is the one with wet AMD, but also corneal scarring from an accident many years ago. Therefore it is not one I use much, but the idea of treating it for wet AMD is so that a corneal transplant may become available in the future if my left eye gets too bad. The good news with the right eye is that the injections of Eylea have been working, and there is now no fluid behind the right retina. The consultant wanted to order one more injection of Eylea and then wait for a whole 10 weeks before seeing me again. So that is good progress. I had the injection this morning. (Saturday 20 January 2018)
Of course, should I experience problems in the meantime, or my eyesight gets worse, then I can go straight back to the eye hospital and they will see me immediately. Thank God (well, the Labour Party actually) for the National Health Service, and long may it survive.
My trip to the eye hospital went well, I think. I had the retinal photography done first and then an eye test as usual. My right eye, the one with wet AMD, was about the same, in other words I could read few letters, but this time with the pinhole I got a bit further down the chart, about half way. This is because of the corneal scarring from the accident 40 years ago.
My left eye, the one with dry AMD, seemed slightly improved, I read more letters than before. Still well better than the level required for driving, thank goodness. Then loads of drops to numb the eye before the pressure test which was normal and then more drops to dilate my pupils.
Then I saw the doctor who was pleased with the results, and decided to take me from injections in my right eye every six week to every eight.
I asked him about lampalizumab which could be a treatment for dry AMD. He knew about it but said it was early days to see if it was effective. He said a treatment for dry AMD was the Holy Grail for eye medicine.
So I'm back next week for an Eylea injection. My dilated pupils had a hard job coping with the bright sun on my wife's white car, my son's white front door - in fact with anything at all bright. As I write, about eight hours later, it's settling down a bit. I should be able to drive tomorrow.
Time for another update. After the monthly series of injections, I went yesterday to see the doctor at the eye hospital. The photography of my right retina (the one with wet AMD) showed that the injections had worked and the stray blood vessel had gone, leaving a flat retina. So the injections are now every six weeks for a time.
The left eye (dry AMD) hasn't changed. No sign of wet AMD there, and the macula looks the same. Still above driving level. So back on mid-summer day for the first of a series of six-weekly injections.
On March 1st I was driven to the eye hospital for another session about my Macular degeneration; dry in my 'good' left eye, wet in my corneally damaged right eye, but this time with a doctor to assess progress. After an eye test which showed the vision in my left was still good (given enough light) and once again confirmed I can see little through the damaged cornea of the right eye, I had drops in my eyes to dilate the pupils and then into the Retinal Photography room. The same pleasant Irish guy did the job. He did comment about a bit of fluid under the right retina. Then back to the Macular Unit to see the doctor. A different one this time. He was pleased with the vision in the left eye, but concerned about re-appearance of fluid under the right retina. I had been on Eylea injections in the right eye every two months, but he ordered me back on to monthly injections to try to control the fluid build up. He wanted one done as quickly as possible to start the monthly series, so an appointment was books for the next available slot. I told him I was taking a lot of lutein, 10mg three times a day. He said that was good. Perhaps that's why the left eye (fingers crossed) seems to have stabilised.
So it was on 7 March I was once again driven to the eye hospital, by my son this time. The eye test was done again and this time I read one extra letter with the left eye. With the right, everything a blur as it has been for the past forty years since my accident. More drops and then into a small treatment room. The usual checks to make I was the right person. I did point out that my file would be the one with "Wimp" written across the top! I've always hated things near my eyes so this is a bit of a torment. Loads more drops, both anaesthetic and antiseptic. Face wiped with iodine swab, a cover put across my face leaving just the right eye exposed. What looks like a spatula used to lift my eyelids with a clip is put in to keep my eye wide open. Told to look hard left, slight sting as the needle penetrates the inner eyeball and then the fluid is there, floating around inside my eye and the needle is gone. Swiftly the clip and cover is removed and it's over. I think the whole thing takes about ten minutes. Unpleasant but if it works it's worth it.
Back again in early April for a repeat performance.
Who knows what the future holds? At the moment with a few minimal adaptations my life is normal. I prefer not to drive in the dark now, but if the road is well lit, and especially if it's a road I know, it's OK. I am more susceptible to glare now so night driving in the rain calls for extra caution.
I'll do an update next month.
My trip to the eye infirmary today was much the same as before. I had an eye test of both eyes, and I was told my left eye had actually read one more letter than last time! Keep taking the lutein! Of course with corneal damage, the right eye sees not a lot anyway. Then into the operating theatre and onto the reclining chair that has replaced the table. When I commented on this, saying I preferred the table, they pointed that that many of the patients have mobility problems, and the chair is easier. One ends up lying almost prone anyway. The iodine swab and the cover, and the awkward bit of getting in the clamp that holds the eyelids apart. Loads more drops and a prod: "Can you feel that?" Luckily no, so then the needle. The anaesthetic drops stop one feeling it enter the eye, but it is felt as it goes right through because the drops don't numb the inside of the eyeball. But by the time one feels that, the bubbles of fluid are there (the built in lava lamp effect) and the needle is out.
So back home, looking at bubbles and tenderly rubbing eye, hoping the soreness wears off by the morning.
Back on 1 March 2017 to see the consultant and a battery of tests no doubt to look at the retinas of both eyes to see how things are going.
I saw a plea online for people over 50 to take part in a study on the relationship between dark adaptation and dry macular degeneration. Which is why I ended up on a train to London this morning. Taking part in a research study at City University. The nearest tube station was Angel, after that it all went wrong. The map they had sent me was out of date because Angel station, on the surface anyway, has moved, but their map had it in the old place. It took me an hour and an escort in the end to find it m- a ten minute walk from Angel!
Long day but interesting. The hypothesis is that how well the eye adapts to the dark can be a marker for early signs of macular degeneration enabling earlier diagnosis and maybe in the future, treatment. Interesting battery of tests, involving being in the dark, except for a little red light, all the time and then being tested on a machine that flashed a bright light in my eye, and then I had to press a button when I detected another much dimmer light. The sequence as repeated several times. I also gave an account of how I felt poor lighting affected my eyesight. One good thing though was that my left eye was tested at 20-20 vision - in good light of course. They weren't interested in my 'wet' right eye.
No immediate benefit to my eyes, but hopefully help toward earlier diagnosis which will be good if a treatment for dry AMD is found. I have been taking lutein at the rate of 30 mg a day since diagnosis. The left, dry, eye seems to have stabilised, and 20-20 vision was a real pick-me-up. For the time being anyway. The right, wet, Eye is receiving injections but I cannot tell what improvement there might be because the cornea is badly damaged on that eye from an accident years ago, and their study is restricted to dry AMD.
I got a teatime train back home. I am due back for a follow up in January.
I attended the Eye Infirmary on 2nd November 2016. As usual, I was given an eye test before going in for my injection. Of course the right eye test is inconclusive because of the old corneal damage, but the left eye, the one with dry macular degeneration, shows no further decline which is great news. Of course I live day to day on this, but if it stays on this plateau I will be happy.
Then into the operating room. The operating table had gone and in its place was a chair, rather like a dentist's chair. (I had been to the dentist that morning for a check up - what a day.) This chair fully reclined. I will never get used to having things shoved in my eye and they put the clamp on my eyelids to stop it shutting. Anaesthetic applied of course, lots of drops and antibiotic fluid.
"Look down," she said. "Sharp scratch," she said and then I could see the fluid in my eyeball. Slightly sore but it was done.
The fluid wore off much more quickly this time, within an hour vision was back to normal. Either my eye is getting used to Eylea or the dose is smaller than the initial injections. But the eye remained sore, feeling like you've got dust in the eye, for quite a while.
Back again on 28 December. Merry Christmas and Happy New year!
I decided to go to an optician (Specsavers, actually) to if anything could be done to sharpen up my vision. I was seen by an excellent lady who understood my position perfectly. She discussed at length my needs and tested me thoroughly. I ended up with a new pair of varifocals which did improve matters. (I've had varifocals for many years so I did not need to adjust that way). I can now drive with much more confidence. She also gave me a pair of reading glasses, with the same prescription as the bottom of the varifocals. These make reading very comfortable, and somehow, all the double vision has gone with both pairs! I use the reading glasses for the computer at a distance of about 30cm from the screen, and everything is sharp again. I've turned off the magnifier bar.
I have been taking Visionace for some time which has 4mg of lutein, one a day. But I've dropped that now in favour MacuLEH, a formulation developed by the London Eye Hospital (@EyeExpertUK) based on the results of a study called AREDS2. This has 10mg of lutein per tablet, and I'm taking three a day. Quite a jump! Let's hope it staves off the evil day.
According to the consultant at the Eye Hospital, things are stable at the moment, and my Eylea injections in the right eye are now to be every two months. The next is on 1st September, when one again for a few hours I will have my own private lava lamp!
On Thursday I went along to the eye hospital with my dear wife for another injection. I suppose I should be used to it by now but that doesn't seem to be the case, I was still nervous. I was surprised that there was no retinal photography this time, and they didn't seem interested in my left eye, the seeing one that has the dry macular degeneration. When I did the sight test before going into the operating theatre, the person wasn't even going to test my left eye, but I insisted, because I want a standardised, empirical measurement of how the left eye is seeing. Rather important for driving! As it turns out, the left eye is still well above the driving level. The test for the right eye of course was pathetic because of the corneal scarring and really not much use in assessing how the retina is doing.
The into the theatre for the injection. Iodine wipe of my face then a mask over the face, covering all except the right eye. Lots and lots of drops, anaesthetic and antibiotic, and then they put the spring in to keep my eye wide open, I don't feel that, but I know it's there and I actually saw it this time as it was put in. Very disconcerting. A nurse comes and holds my clenched hands on my waist. More drops and then the nurse practitioner says "Look down and to the left - sharp scratch." Although the outside of the eye is numb, the inside isn't and there is a sharpness as the fluid comes in, which of course I see. But it's quick and the needle is gone. Then it's wipe away the tears (literally) and get up, viewing the world with the lava lamp effect. It's no good shutting my right eye to blank it out because it's inside my eye! But I can see well enough anyway with the left. Make an appointment for the next one on October 31st.
I am driven home and try to relax. My eye is sore, as though there is grit in it, all evening, and in the end I went to bed early. The next day it was still sore but the fluid has dispersed and by Saturday, vision was quite normal again (for me, anyway) and the right eye was only a bit tender.
Some will have noticed I tweet about macular disease. Some bad news. My left eye (the one I use) got suddenly worse mid June(2016) to the point where things are doubled or blurred. Karen took me to the eye hospital A&E on a Monday morning where they did tests. The retinal scans showed that the dry AMD has spread in my left eye. This means my vision is no longer good enough to drive. I'm not making any decisions in a rush but I'm not driving, for the time being anyway.
Some small good news is that the retina with wet AMD in the right eye is much improved after two injections, but of course I can't see with that one anyway because of the corneal damage from the accident in 1977. But it could open the way for a corneal transplant at some point in the future. Whether that would give me enough vision in my right eye drive again is far from certain though. I have an appointment for a third injection in the right eye in July, but it could be the consultant, after receiving the report from A&E, will call me in before that to look at the left eye. But as no treatment is available for dry AMD, there may be no point.
I am using a magnifying glass to look at the screen to check what I am typing. The computer is quite difficult to use so I will have to start looking into the accessibility options in Windows. I will try to continue to post. If you want to help, please buy the book!
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