Feeling really down about my eye

[OhYouBadBadKitten]

Just need somewhere to whinge really. Have told a couple of people and all I get is stupid platitudes - things like well you've got your other eye.

Ok, had cataract surgery in both eyes last year. The implanted lenses are high tech, superduper multifocals (which mean that shouldn't need reading glasses) and only handful nhs patients had been given them. All was hunky dory for a bit - some problems with computer vision and lots of halos and glare but I was adapting.

Then had a scare with back of eye - stuff due to retina and vitreous but thats resolved apart from some impressive floaters.

Then the capsule that holds lens clouded over in one eye. Needed laser to cut the back of the capsule away. Had an aborted attempt last summer and a successful attempt about a month or so ago. Had a couple of days of beautiful clear vision.

Now my vision is clouding back over in that eye. Its not terrible but I've lost some vision, reading is becoming harder and twilight and indoor dull day vision is more challenging. I'm not confident enough to drive with my vision as I don't feel its predictable enough.

On friday my surgeon said that he thinks its the lens itself. It seems to be developing some faults that have not been documented in this lens before. He said he was really sorry he asked how I felt about replacing that lens. Its really risky surgery especially since I've had this laser treatment. I don't want to lose my sight altogether so I've told him I don't want it as things stand.

We don't know how its going to progress, we don't know whats going on with the lens or whats causing it. I'm going back in 3 months to see how its going. He is then going to take some photos to publish whats going on.

I'm really scared that I'm slowly going to lose vision until I'm forced to jump to the very risky surgery. Every time I look out of that eye I feel really panicky.

I know people manage and its not the end of the world but I am scared.

You poor thing. I guess you just have to wait and try not to panic. I cannot offer any advice as know nothing about it but understand how terrifying losing your vision can be (used to get tunnel vision/ blurry vision etc prior to a migraine)
Good luck, hope all goes well. x

im sorry i cant advise just offer my sincere sympathy as my brother is facing same end result(although his was due to someone else violence) hes also very scared about losing his eye, so i can really symathise with how scared you are..might be best to find out the facts about this second op and what the success rate it etc? good luck

Thanks WowOoo. Its all I can do isnt it.

Message withdrawn

oh sweetie - that really sucks.

this is going to be a platitude, but don't forget your eyes work together, so don't be tempted to cover up your good eye to see how bad the bad eye is IYSWIM. i can't see properly if i cover up one eye!

fwiw, i think the plan of going back in 3 months is a good one. i had a patient who had the lens surgery you mention and it was fantastic! not to say that you should definitely go for it, obviously that's your decision.

hope things get better for you soon.

I had optic neuritis in my left eye 18 months ago. Its left me with permanent damage sadly and although I can see I find that bright light, tiredness etc make it difficult to focus. Obviously its very different to your situation but I can understand your fear of losing your vision I feel panicky every time my vision gets a bit cloudy and I think its happening again. {{{hugs}}}

DoodleToYou - he just doesnt know what will happen with it as its never been seen before with this lens. He doesn't know whats causing it.

He didn't quantify the risk. He agreed with me when I said I'd rather have reduced vision instead of risking surgery at moment. Problem is my retina is already fairly high risk. The lens thats in there will be scarred into place and need cutting out. I think that theres also a strong probability of needing a vitrectomy as well. Its just so beyond straightfoward cataract surgery.

part of me is really angry - not with the surgeon because he is doing his utmost best but with the manufacturers of the lens because clearly something has gone wrong. I don't know what happens from this point?

Message withdrawn

TheUrbanDryegg - had they had a yag capsulotomy?
I keep reminding myself to look with both eyes, its so hard not to keep looking now and when I do I panic. The eye that is struggling has been given a multifocal thats better at close and had good contrast (tecnis) . The other eye (rezoom) is great for daytime bright distance but not so great for reading and is pretty hopeless in low light levels.

ROSEgarden - I did hesitate to post about this cos I've read about your brother and didnt want to make things feel worse for you. I really really feel for him and I hope that the outcome is a good one.

dustyeastar - eye stuff is horrid isn't it and so often real life friends don't understand the impact.

oh no chick, dont worry, your problem is AS important as anyones, this is the only place i have been able to get help, so dont feel you cant do it either

Would it be worth asking your surgeon about the (possibly) faulty lens? Make it clear you're not criticising him, but that you'd like to know if - in his opinion - things would have been different if the lens hadn't been (possibly) faulty?

Then take it from there.

DoodleToYou. I think a log is a good idea. I've also wondered whether I should have further testing to really make sure that we fully understand whats going on because 3 weeks ago I went in as an emergency and at that point they thought it was a swollen retina and put me on steroids. Now he thinks my retina is ok and has taken me off them again. (which is good as they didn't help and I got all paranoid about getting conjunctivitis as every other kid seems to have it atm)

I could try that Urban. As I'm not seeing him for 3 months do you think it would be ok to do that in writing? I know its very very difficult because I'm strongly into the fact that doctors shouldn't be afraid of patients sueing them or whatever. I don't blame him and I don't want to put him in a defensive position when its not something I'd do.

yes put it in writing. but make it very very clear that it is the lens manufacturer you have issue with, not him.

Am writing down how you've phrased that Urban.

Hello, I mostly just wanted to sympathise. My DS (22mo) has congenital cataracts and you do get a lot of platitudes about this when it's something that for so many people is very straightforward. I have to listen to someone telling me about thier great aunt and how well her cataract surgery went several times each week.

On the medical side of things, I might think about asking for a second opinion to try to find out more about exactly what's wrong with the IOL - it needs reporting if it's the device that's gone wrong, but it sounds like your surgeon is taking it seriously. Any manufacturer is obliged to test a device like this properly before it's used so if it's hasn't been properly tested (your case isn't isolated) you could also have a case against them.

You could consider having the surgery to remove the IOL and then using a contact lens after that (that's what most children still do). I know not risk-free after one retinal detchment, but safer than things like sulcus implantation and the other tricks they try to get IOLs into adult eyes when it's not straigtforward, plus there's much less risk of it clouding over again without an IOL.

Have some (((hugs))) from me.

Thank you so much for your advice. I was so worried how I to handle this. I hate it, I really do. I did know there would be surgical risks, there always are and I did understand what they might be. If its caused by a faulty lens though its very different and I would not want this just to be swept into general statistics.

In reality though I just wish all this had never happened and that I could go back to how things were.

Oh crimplene - thats so it isn't it. People just don't understand how very different cataract surgery can be for different cases and when they hear things like swollen retina I get 'oh you always expect a bit of swelling after surgery' and rubbish like that. I do also find the opposite in elderly people asking me how cataract surgery was and what to expect.

I could ask to find out more about whats going wrong with the IOL. I know that my surgeon did report it when he initally noticed some 'glistenings' and at the time he thought they were visually insignificant. So I'm sure he will be reporting it. I do know that the IOL hasn't got FDA approval in the states yet because they want more testing though it is used in Europe.

If I do need to have it removed (and its something I don't want to do unless I really really have to) I'll have to discuss all options with him.

Thanks for giving me the chance to 'talk' this over, I'm feeling a bit less panicky now and more rational about how at least to handle things in the short term.

The other place you might find some people who've had the same kinds of experiences is the RNIB discussion board. Also the chance of finding others who've had problams with thi IOL if you're considering legal action.

Thanks Crimplene
I might go there when I'm feeling stronger.
I think for the moment I just need to write my letter asking for further clarification as to whats happening. Then I need to try and chill out about the whole thing. Once I've done what I can for the time being I need to do my best to concentrate on actually getting on with life and enjoying it.

After all, it may not get any worse and hardly anyone has perfect eyesight - I reckon half the country goes around without having their vision corrected properly. I've had a good weep and I've got an action plan.