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TOPIC: Refractive Lens Exchange (RLE)

MHRA Yellow Card Scheme 05 Apr 2019 17:42 #1

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There's currently much discussion on the new MBEF Fb group* concerning horrific visual problems members have suffered as a result of refractive lens exchange (RLE/NLR) - including blindness!

And with adverse incidents escalating, I thought it timely to advise people unaware of the facility to report their issues via the Yellow Card Scheme on the MHRA website :kiss:

You will need your lens ID, which should have been given to you at the time of surgery, but if not, contact the provider and ask for the ID card to be emailed to you asap - one per eye.


yellowcard.mhra.gov.uk

Please note that there is no cost for lens ID cards.

*Visit www.facebook.com/groups/MBEFoundation/ to join.
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Refractive Lens Exchange (RLE) 16 Mar 2019 07:56 #2

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I booked a consultation at Optical Express in St . Vincent street in Glasgow in 2017 to enquire if I would be suitable for laser treatment as I only wore reading glasses and I kept losing them. They were so friendly and helpful....lovely bunch ; or so I thought....oblivious that this was the beginning of their sales tactics) After tests they said I was unsuitable for laser surgery but ....surprise surprise as I only had glasses for reading I would be an ideal candidate for lens replacement. They said it would really improve my eyesight and I wouldn’t need to wear glasses again. I didn't feel my my eyesight was too bad but I was getting frustrated at having to take my glasses on and off and on and off - especially at restaurants for menus etc (when I had forgot them) - but this issue seems oh so trivial now. They gave me documents to sign and I was to return with them a week later for surgery. I looked through them but didn’t really understand what I was really consenting to. I should have asked more questions and researched OE's capabilities. At this point, I only had the T&Cs to inform me. The staff at the clinic made this procedure sound as simple as having a haircut. It was going to be fantastic (their words) as I was going to be one of the first to have these premium lenses.

I was very quickly called to pay for my treatment and the whole process felt very rushed. Although I had been given written T&Cs, the complications of this surgery was never explained to me in person and any question I asked was made to sound so trivial - like it would never happen to me. No one explained that starbursts/halos/ghosting could last forever and could take up my whole eyesight.

At no time before surgery was I informed of any risks. It might sound naive now but I trusted that this was a common minor procedure.if someone had sat and gone through risks etc I know for a fact i would not have gone ahead. For example......I didn’t have a clue what even dry eyes were. I certainly do now unfortunately.

They painted a rosy picture of a simple operation, minor surgery, a quick procedure that would change my life.....it certainly did, but not for the better. They also said I could choose a pair of sunglasses half price. Wow!! Their hindsight was better than mine. I most certainly need them.

The surgeon called me by telephone and asked me if I had any concerns, I said it concerned me the thought of halos etc. He asked me if I’d ever had a floater in my eye and said the halos, starbursts etc were just like floaters.....if I ignored them I wouldn’t see them. I trusted that he was telling me the truth. How wrong was I. Blatant lies.

I didn’t speak the surgeon on the day of surgery.

Prior to the surgery my apparent astigmatism was never mentioned. During surgery the surgeon put 2 incisions in my eyes without discussing with me before or after surgery. It was only when having a consultation with an independent ophthalmologist surgeon that this was disclosed to me.

Post treatment is where I feel the negligence started to show. I immediately knew there was something wrong with my eyes. I called OE as I was so concerned and they reassured me that it was normal to feel this way but it would not take me long to adjust. I continued with hope after their reassurance. They were wrong.

The first time it really hit home hard was when I tried to go out driving at night. I had been advised by OE that this should now be safe to do so and I should carry on my normal duties. I couldn't believe it - I couldn't see! I was in floods of tears and I was frightened - all my eyes were showing me were circles and bursts of huge bright lights the sizes of houses! It was only a traffic light. The lights from streetlamps, traffic lights, cars - they were all filling my vision and I could not see. It's the most frightened and terrified I have ever been in my life. This is when I knew for definite that something was not normal. To date I am still unable to drive in the dark.

In addition to this, I had been suffering from severe dry eyes and blurred vision. From dusk onwards I have circle effects/moving circle/bubble constantly coming towards my eyes which is really distressing. I now understand that this is a reflection of my multifocal lens.

Over the next few months, I attended more appointments that I can count at this stage, to no avail. Every time I went to OE they told me that it was normal and to give my brain time to adjust. They would give me eye drops to help with the dry eyes. Even things like OE telling me I can no longer use eye drops with steroids as it could damage my eyes, then ordering me eye drops with steroids in them... if I didn't know what to look for on the bottle, I wouldn't have known and who knows what damage could have been done. All the while, I had nothing to even slightly relieve any symptoms.

Time passed, I have not improved.

I continuously asked for options as to why this has happened, how it could have happened and what to do to rectify the issue. It was, and is destroying my ability to lead a normal life. No one seemed concerned.

Through constant persistence, I managed to get OE to acknowledge I had a serious issue with dry eyes. OE initially booked me in for punctual plugs, but I had heard of lipiFlow and asked them if they would be willing to try this. Their initial answer was no because of the cost (I have this answer in an email). I asked them what kind of dry eyes I have as the treatment given should depend on that. After all the appointments I have had concerning my eyes, they did not know. I then asked to be booked in for an assessment. They then advised that I had both types of dry eyes but would only be willing to try punctual plugs because of the cost.


At the moment I have severe dry eyes, posterior capsule opcafication , posterior vitreous detachment , cloudy vision, ghosting, halos, starbursts, halos, blurryness, floaters and light sensitivity. I’ve had to change the bulbs in my house, I also sit in the dark at work as I can’t bear the lighting and when shopping I constantly feel as if a torch is shining into my eyes with the lights. I cry most days as I find having between having the gel moving in front of my eyes and the constant dryness so distressing. I really don't know how they can sleep at night knowing that this surgery causes all these symptoms.

I am now a stage where they have offered me YAG laser treatment. I have no confidence in OE to perform this treatment as they have left me with worse eyesight than before my surgery.

I genuinely feel they were just trying anything to keep me quiet and "hope" that it works.

I cannot believe they are allowed to put people through this torture - I am tormented every day with the thought of opening my eyes as I know I won't be able to see normally.

I feel coerced, misinformed and poorly treated in regards to my whole experience with OE.

On one of my visits I was told that they try to get you booked into the clinic ASAP after your consultation so you don’t change your mind.


I have spent the last year so distressed because of something I am not convinced I needed, something that has complications far beyond what was explained, something that may not even have been what was originally explained to me.

I feel I have to explain my situation better so people can have an understanding of how these people have genuinely ruined my life as I knew it.


If you offered me a million pounds or my eyesight back to where it was before optical expressed ruined it....I would take my eyesight in a jiffy.

It makes me so sad to think that’s my precious sight had gone by these people who have no morals. It’s all about the money,

Any reputable firm would not have provided surgery to someone who didn’t need it. If they had said at any point I would still need reading glasses after surgery, there’s no way I would have even considered it. Why would I spend £6000 to be back to where I was before surgery with all these
additional problems.’

Cataract surgery 08 Mar 2019 11:48 #3

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Hello, new poster here. I realise I'm probably not in the target audience for this forum but I'll ask anyway

I found this site while researching cataract surgery & obviously I'm now concerned with the issues that are raised. My situation is that I'm 59 & need cataract surgery - it's not a vanity thing as I now have limited vision in one eye & severe myopia in the other. While I have been accepted for NHS treatment of the cataract they will not treat the second eye, nor will they correct my astigmatism with a toric lens implant. Hence I'm being forced down the private route.

The essence of my question is how do I find & select where to go? I have had a couple of consultations & quotes, one with a Professor at [redacted] & the other with a consultant surgeon at [redacted]. Both time I saw the surgeon for 25 minutes or so, neither have said they can guarantee perfect vision & I've made it clear i don't want multifocal or monovision lenses.

What more should I do give myself the best chance of success? Are there any sites like this where there is unbiased advice?
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admin: To be clear, you are not being 'forced down the private route', this is entirely your own decision. And if you don't need cataract surgery in your second eye, and can see with prescription glasses, then your best chance of success is to leave well alone.

Given that this site warns against unnecessary refractive surgery - lens exchange or laser - I doubt that any damaged patient will advise you differently, and as two surgeons have told you they can't guarantee perfect vision I am amazed that you are still considering risking your healthy eye
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Refractive Lens Exchange (RLE) - Everything is blurred! 01 Mar 2019 15:21 #4

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I also asked the same question about why he had not had surgery himself, to which he seemed quite irritated, and gave me the same answer as yours, before moving quickly on. In retrospect, there were so many clues that I was being taken for a ride on this, but I was just too trusting. I had also asked one of their optometrists why ophthalmologists all seem to wear glasses, and his bizarre reply was that they like wearing glasses!
I should have smelled a rat, and still beat myself up daily for not doing so.

A Roberts wrote: Hi

Too cut a long story short, I had NLR at the Bristol clinic on 11th October 2018 and returned the following day to have the second eye done by Doctor Alex George. It was extremely busy and the surgeon was operating on 22 patients in the same day! I was very nervous and asked Doctor Alex George why he had not had surgery, and he had said that his prescription wasn't suitable!

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Explant at Moorfields NHS 27 Feb 2019 13:13 #5

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Hi Carl, they did not tell me they wanted to go for different lenses in each eye (for 'blended vision') until after the surgery when I started complaining. I have since read that blended vision is likely to have a poor outcome in certain types of people, like me (I am a doctor). At a follow up appointment, the surgeon even volunteered to me that doctors are well known to have high levels of perfectionism, something about which I was already aware. I have read that high levels of perfectionism are a contra-indication (relative or absolute) to this procedure, which is why in America, perfectionism is specifically assessed to vet patients before treatment. Before the operation, when I asked how multifocal lens treatment works, I was only told about the internal lens construction with a rough sketch of the construction, which is actually pretty irrelevant to a patient. The crucial blending principle (with substantially different focal length lenses in each eye) was omitted from discussion, until after the surgery had taken place and I had started to complain. I gather my astigmatism also made their choice of available multifocal lenses very limited, which again was not explained to me before the operation.

It is interesting what you say about a greasy thumb print. That is how how my left eye feels. I have been describing it as looking through cellophane, but looking through a greasy thumb print is just as descriptive. Overall, my binocular distance vision is uncomfortable, and my binocular near vision uncomfortable and weak. The spectacle lens I now wear in front of that eye makes distance vision somewhat more comfortable, but 'somewhat' is not much. My near vision is also a mess and my close up activities and pastimes (reading and painting), of which I made them aware before the surgery, have also been significantly hampered as a result of the 'dirty' magnification lens in the left eye, and blurry near vision in the other.
I feel my right multifocal lens seems OK and in focus from about arms length, just like with your monofocal and I would be happy just to have the left lens exchanged, for the same type of multifocal lens as in the right eye, although I see what you are saying. It would mean wearing reading glasses, but since the operation, I need them anyway (I did not before), so that is now impossible to rectify. Lens exchange has never been offered. isn't it a highly risky procedure? That worries me - a lot. If I did go for lens exchange, I would definitely want someone who has a lot of experience doing it.

Another description I have about why my vision now feels so uncomfortable is that the left lens has given me a horrible background sensation of 'pressure', or carrying a 'dead weight' in my vision, even when I am not looking at anything in particular. It's a horrible sensation, which I realise comes from having only one focused eye. When I wore contact lenses, and only had one contact lens in, I always hated this same feeling, which some people apparently do not mind too much. If it had been explained to me that multifocal lenses are intended to achieve focus at a full range of distances by relying on one focused eye and one non-focused eye, I would have run a mile before having this procedure, since I would have known it was not right for me. But these things were never explained to me. I think they do not want to tell potential customers, because they know it would put off many from having the procedure. It is interesting that you have pointed out that they did not inform us in the consent form that a lens in front of the eye may not correct the problem. As I said the lens I have only 'somewhat' corrects the problem, making things a little better but still poor even with it.

Explant at Moorfields NHS 26 Feb 2019 18:48 #6

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Hi Tony,

I'd say a bit beyond arm's length. I'm typing this on a laptop with a 13" screen and right-eye only I can't quite see well enough to write, but 1.5d reading glasses make that fine. With both eyes (without glasses) its sort of alright to type, but the thing about the right eye is it's now shown up just how bad the left eye is. It's not just about focus (as you'll know) the multifocal lenses have always been like having a greasy thumbprint on my eye. Over the past year or so though it's got to the point where nothing is sharp at any distance with that eye, and I still don't understand why. I'd assumed it was clouding of the posterior capsule requiring a YAG capsulotomy but apparently, this is not the case.

Why did they use two different multifocal lenses on you? That just seems crazy. Getting used to them when they're the same is hard enough, getting used to two different types/specifications just sounds downright impossible. Got to say, the guy who did my right eye was exceptional (Sasha will give you his name :) ) but perhaps, more importantly, he also has a lot of experience of removing these things.

I've been staring at my phone a lot over the past couple of days, not because there's anything interesting on it but because with reading glasses the screen is so damn sharp - to my right eye at least. The other thing about multifocal lenses is that sticking another lens in front of them really does not work - 1.5 over my right eye makes reading crisp and clear, but over my left eye it doesn't make any difference whatsoever. THEY DO NOT TELL YOU THAT IN THE SO-CALLED INFORMED CONSENT FORMS EITHER! (Apologies for shouting).

I'm back at Moorfields on Thursday for my three-week service. Hope we're also going to talk about getting the other of these damned things exchanged. Wishing you the very best of luck mate - Carl.

Explant at Moorfields NHS 25 Feb 2019 19:48 #7

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How far away is the focal point with your new monofocal lens?

I've got an awful multifocal in my left eye, and a different mulifocal in my right eye, which on its own feel fine (with the left eye shut). But the 'blended vision' thing is horrible. If I had known they were doing 'blended vision', I would have run a mile. But they withheld that information from me, omitting it it when I asked the surgeon to explain how the multifocal lenses worked.

I had a second opinion, who told me it was too risky to replace the bad multifocal lens in the left eye.

Explant at Moorfields NHS 17 Feb 2019 15:56 #8

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So I'm feeling quite sanguine about not being a case study in the Mail on Sunday today, despite Russell, their very nice photographer, turning up at my place of work and us having to fend off security guards from the adjacent company just to get a bit of greenery in-shot. I'm pretty sure the choice not to include my story was essentially down to my not actually owning a pink shirt to wear for the photo shoot. Sartorially challenged - shame on me :)

Anyway; the timing of the article (which seemed very watered down from the draft Thea Jourdan read over the phone; lawyers I guess) was from my perspective amazingly coincidental because just last week I went to Moorfields Eye Hospital (and I must be clear that it was the NHS side) to have a Lentis M-Plus multifocal IOL replaced with a monofocal lens. This was a somewhat risky exercise, as I'd had the multifocal lenses implanted by the dreaded Optical Express in 2013, so the risk of scarring/adhesion was not inconsiderable. I was actually quietly terrified by the prospect of the operation because there was the very real chance the lens would not come out. But last Wednesday I duly arrived at Moorfields at some ungodly hour of the morning ready to be sedated and to have Mr [admin edit] of External Diseases (I have no idea why the department is called this) make a couple of small incisions in my eye and attempt to cut up the old lens and replace it with a new one. Again, for the avoidance of doubt, this operation was about getting rid of the LENTIS M-PLUS (expensive) multifocal lens and replacing it with a 'cheap' NHS monofocal lens.

And again, to be pretty damned clear, this was the best decision I've ever made.

Within 36 hours the difference in the quality of vision between my left eye, which still has the multifocal lens, and the right eye was extraordinary. Improved contrast, tone, depth of colour (which I had not even realised was reduced) and a general sense of sharpness about my eyesight which I had thought lost six years ago. This is no longer simply an opinion; having a multifocal lens in one eye and a monofocal lens in the other now allows me to make a side-by-side comparison between the two technologies, and simply emphasises just how inferior visual quality from the multifocal lens is when compared to the monofocal. Hopefully, I will be able to have the left lens replaced in the next few months. I've said it before and I will say it here again; in my experience, the Lentis M-Plus lens is not fit to be implanted into a human being.

Sure, I need reading glasses. I stopped by Vision Express in Walton on Thames (I mention them just because I'm always slagging off optical companies, but this particular branch has been consistently excellent so credit where credit's due) yesterday and picked up a perfectly serviceable pair of ready-readers for fifteen quid, but even with a 1.5 dioptre prescription, the quality of vision at near-distance is much improved.

After six years of hell inflicted by Optical Express, thanks to the NHS the eyesight in my right eye is now freakin' delicious.

There's another thing; it's impressionistic and obviously subjective, but since the operation, I just feel better in myself. I'm starting to wonder if the reduced light levels and reduced contrast, as well as under-saturated colours, actually have a psychologically depressive effect - if you have mfIOLs and are reading this, do you find this to be the case?

If you are thinking about multifocal lenses, just be aware that having them implanted is a risk. Even the Mail on Sunday's research suggested that one in twenty recipients have problems, an absolutely scandalous statistic in surgical terms. Even if the operation goes smoothly you may not be able to adapt to them, and there is no way to tell in advance whether they will be good for you or not (but in my experience, probably not). You will be taking a leap in the dark; it's up to you, but be aware of the risk.

And to [admin edit] and the surgeons and staff of Mackellar Ward at Moorfields eye Hospital - thank you, you are all just completely amazing!
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admin: Apologies Carl, but your surgeon sells laser and RLE in the private sector and I will not promote his services on my site, hence my edits. I am however happy to gve his name to anyone attending MEH for NHS treatment :kiss:

Refractive Lens Exchange (RLE) - Everything is blurred! 18 Jan 2019 17:09 #9

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Hi

I wonder whether you would be able to help me please, enclosed is a brief overview of my story!

I was lured in by Optical Express and their advertisements of laser treatment at £1500 per eye, however that turned out to be £6000, as I was not suitable for laser, and was advised that I would need lens replacement. I was given the hard sell and was called every couple of days by staff, and agreed to surgery. The original price was £6500, however as I work on the hospital wards, a £500 discount was offered, bringing the total to £6000.

I was advised that the “worst case scenario” would be that I might need +1 reading glasses in a dimly lit restaurant, which I accepted. I was told that I would not need glasses or contact lenses again, however this was only verbal.
I was informed that in less than 2% of patients, they might need a “simple” laser top up too “fine tune” the results.

Too cut a long story short, I had NLR at the Bristol clinic on 11th October 2018 and returned the following day to have the second eye done by Doctor Alex George. It was extremely busy and the surgeon was operating on 22 patients in the same day! I was very nervous and asked Doctor Alex George why he had not had surgery, and he had said that his prescription wasn't suitable!

I returned home and saw the Optician and I explained that it was like looking through cling film. I was told that there was a membrane covering my right eye, and to give it another week. I returned the following week, and the "membrane" had dissolved, however my eyesight still remained the same. As the weeks came and went my depression started to kick in. my vision blurred ,I could only see what was right in front of me, it was difficult for me to work, as working on the wards, I could not see patients faces, driving during the day was difficult as despite being told that I had reached the driving standard, I could not read the road signs, but was kept being told to remain patient, as they needed to heal, and it should all settle by day 90. In desperation I spoke to Colin Berry who tried to reassure me that he would help,and made an appointment for me to see my local optician. I was then advised that I had settled short sighted with an astigmatism, (this being a new condition) which resulted from surgery. I was informed that it would most likely settle on its own, and not to worry. However they would order me a pair of glasses and some contact lenses to help. After chasing them for 2 weeks, I was informed that they had not been ordered, but was given a pair of lenses from the shelf (although I was told that they were not my exact prescription, but they would help), they didn't, and I removed them the following day.

My vision has been blurred for the last 3 months and I have had nothing to help me with this, although I was told that I had reached the driving standard, I was shocked as I said that I couldn’t see properly, I couldn’t read the road signs; I was told everything was okay. One day when attempting to drive I damaged my car along the curb, as I couldn’t see it clearly. My work has been very difficult, as I cannot see people’s faces clearly, unless they are stood right in front of me.

The 90 days of waiting has now elapsed, and I have been informed that as I was in the unlucky 2% of patients, I am now suitable for "simple laser top up" on my right eye only, however the consent paperwork I have been given, is not what I was led to believe: it reads that there is a strong possibility that my eyesight could be made worse, they will be using an unlicensed product in my eye, complications may arise, and there is a strong possibility that I will need glasses! I have been lied to and misled, as this would not be a simple “top up” procedure. Obviously I have not signed to agree to accept all the very negative outcomes, however I am left with being short sighted, blurred vision, an astigmatism and I am still not able to drive at night, which I paid £6000 for. This is all the result of surgery, I now need glasses or contact lenses to try and rectify this, the whole reason for having the surgery was to not wear glasses!

I am really not sure what to do, and wondered whether you have encountered something similar and your advice?

Many thanks
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admin: Colin Berry should have referred you to the operating surgeon as soon as you reported your issues, and he is negligent for not having not done so. I advise that you take this matter up with the GOC.

Meanwhile, contact Tweedledum - This email address is being protected from spambots. You need JavaScript enabled to view it. - and insist that you see Alex George (aka Dr Duck) asap! If this is not arranged then you must contact the GMC.

If you need further help please send an email
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Oculentis faulty lenses! 30 Dec 2018 19:04 #10

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Driving at night with Oculentis M Plus multifocal intraocular lenses. I mean, frankly it sucks but it's interesting how you develop strategies to cope with rubbish vision (which is still technically legal because car number plates are still recognisable).



So again, sorry that these posts are in reverse order but I wasn't aware of the image limit per post when I started typing. For anyone contemplating Refractive Lens Exchange with MF IOLs here's a piece of advice from someone who has had it done and lived with it for 6 years.

In a word, don't.

In February 2019 a very nice gentleman from Moorfields Eye Hospital is going to do his best to remove this piece of Oculentis crap from my eye and replace it with a refractive monofocal lens (don't get me started on the kinoforms of diffractive lenses, we could be here all night). The prospect of this op is of course completely bloody terrifying, but the surgeon has done it before and seems both hugely competent and completely ethical, so if he's up for giving it a try it would be remiss of me not to give it a shot too.

The idea that by March I might be able to see stars again is something I'm clinging to.

Happy New Year, I hope.
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