Coping with eye loss

The adnexal service performs many such [eye loss surgery] operations every month. To begin your consultation you will be seen by a nurse, and then by a doctor. 

Consultants speaking with patients
“Right and it is the case that you've not seen anything with that eye”
“Not at all” 
“Not for some time now, in fact ” 

“No trouble with it since the operation I’ve had no pain, really”
“Good”

“Look up for me, and look down”

After the examination the risks, and benefits, of the operation will be
explained to you.

Consultant speaking with a patient
“Basically you lost your eye as a child. When you have an unsightly eye like this, that's lost some of its volume your choices really for treating are several. You can do one of several things. One of the things that you can try, and I think you've tried it in the past, is to actually be fitted with either a soft contact lens which hides the fact that the front of the eye is scarred. Brown eyes they hide it quite well, but I think you've tried contact lens. And the other problem is a soft contact lens doesn't add any volume to the shrunken eye, so it still looks somewhat sunken back, and the opening of the eye looks rather smaller.

The second thing one can try, rather than just a soft contact lens, is a scleral shell, which is made from Perspex and is painted to match your own eyes. As you know brown eye / brown eye if you want. You can have a red eye, if you want, the morning after the night before! But effectively we actually match one, and it's made of Perspex so it's very durable. You take it in and out like a hard contact lens, and it moves quite well over your own shrunken eye. But some people will not tolerate that. The great thing about a shell is, of course, it adds extra volume. So that the fact that it's sunken back a millimetre or two, the extra thickness of the shell, which is about three millimetres or an eighth of an inch thick, will add that bit of extra volume. So it can be very useful in some people, but not everybody tolerates it. Some people find that it causes ache in the eye, and I think you had a shell for a while”

“Yeah”
“What was the problem with it?” 
“I felt a little discomfort, It was so rubbing on the eye”
“That's exactly what it is. Some people have enough feeling in the front of the
eye that they're aware that it's a bit of a foreign body” 
“It didn't feel very well”

“Particularly if the cornea, what was the old clear window at the front of the eye, if that cornea has a bit of calcium chalk in it, which it does when it gets very sick,
it can be rather uncomfortable to wear a shell. You can either remove the whole eye
including the white coat, or you can just remove the parts that make the pain. 

Effectively what happens is, if you take out the painful bits but leave the white outer coat of the eye. The white outer coat is a very nice tough covering, very tough tissue. It's designed to be, it's the outer coat of the eye. And the muscles that move the eye
actually go into the white coat, so that as the muscles move the eye up, down and side to side, they actually work on the white coat of the eye. So, if you leave the white coat, just taking out the pain generating bits, the clear window at the front of the eye - the coloured part, you end up with not damaging the moving mechanism so much. 
This is because the muscles work very well, they haven't been disturbed. And it stays there forever, mother nature will wrap this up in fibrous tissue, gristle, and it moves up down just like the normal eye. But it is the socket, it should stay there forever, you should never see this again.  Padding it not only helps prevent swelling, which reduces pain, but it also helps get rid of it by the pressure effect. 

Any particular questions you would like to ask?” 
“You really answer any questions I had”
“Well, if you have any other questions feel free to ask, of course. If there are a sister
can answer, so please any questions feel free. We'll look after you like your family.”
“Definitely”
“Good super, thanks ever so much, and as I say any worries or questions let us know.”

Consultant speaking with a patient
“Okay I’m the consultant physicist Marie Restore and I’m just going to…” 

Following the consultation you will be sent for further investigations. And a pre-operative assessment to determine your suitability for surgery, and a general anaesthetic.

Nurse speaking with a patient
“Mission accomplished”

Pre-assessment

Nurse speaking with a patient

“The next thing is are you allergic to anything that includes injections? It also includes tablets and it includes tape, particularly red stretchy Elastoplast”

“No, no”

“So, I need you to roll up sleeve up there and then I can put your heart together [check blood pressure]. That’s very good. You’re just hard to get blood out of, you just don’t want to give any up at all!
Now, for the rest, we just want your weight. Oh yes [it has changed], maybe three kilos”

Nurse speaking with a patient

“My name is Jasmine I’m the nurse counsellor”

Assessing the psychological needs of the patient prior to the operation is important as, in some cases, additional support can be offered.

Nurse speaking with a patient

“I have thought about it for a long time really, and I just thought it's the right time to do it. Yeah”
“And what happened to your eyes?”
“I was playing with a knife and then I broke it, and then a splinter came from it and went straight right into the eye. So, I had to be operated on to, to get the splinter out.
“And what age were you?” 
“Um, I think I was about four or five years old”
“Very young”
“Yeah, I was quite young. People treat you a little bit different, you know I mean?”
 “Yes. So, with going through surgery, how do you feel? You've had a discussion with Mr Rose, how do you feel now about it?”
 “I have to say that I feel a lot better, after I met him because he explained a lot of things that I had questions about. And I was satisfied with what I had from him because he gave me a few options. He told me about what could be done and I chose this option that I’m going to take, because I felt that it was the perfect thing to do and it actually addressed all the needs I had.”

Consultant speaking with patient
“Hi Mr Pits my name is…”

On the day of surgery each patient will see both a doctor and an anaesthetist prior to surgery.

Consultants speaking with patient
“… and it involves removing part of the eye. When one removes the eye you can do it in two ways. You can do an operation called an enucleation, where you remove the whole eye. So, that's the white of the eye; you take the muscles off and then remove
the hole of the eye as an eyeball. The other operation you can do is an evisceration
where you leave the white of the eye behind. So you take the front part of the eye off, and then take the content of the eye out.

“Hello my name is Dr Ahmen, am I'm the anaesthetic doctor, okay? What I need to do is just ask you a few quick questions just about your general health really, and then we'll talk about the anaesthetic. 
Now, I see that you've been here before, that's great. And that was in January of 05, which is great. No change in your health since then is there? 
“No” 
“After anaesthetics do you have problems with nausea and vomiting at all?”
“Well I don't know, that's the only time I've had anaesthetic”
“So, you didn't have a problem then…” 

Various ward checks will be carried out. You will then be escorted to the main theatre where further checks are undertaken before you are anaesthetised.

Consultant speaking with patient
“Do you have any allergies Michael?”
“No, not that I know of.”
“What are we going to be doing? You tell me.”
“My right eye, hopefully!”
“And it’s marked”
 “It’s marked on my right eye”
“Good man thank you very much.”
“Get that cup of tea ready for me! 
“So, about now, ready? So there's cold feeling in your hand okay? And a funny taste in your mouth, and you’ll be going off to sleep. As you're going off to sleep, if you don't mind we'll just give you a bit of oxygen. We like to make sure you get some fresh air while you're visiting us.
“That’ll ben nice!”

General talking pre and during surgery. 

You will be moved to the recovery area until consciousness has been regained

Following your operation further counselling is provided to give you further psychological support throughout this difficult time.

Counsellor speaking with patient
“…tell me a bit about how you come to have your eye removed? How did that happen?”
“It was from an accident at work. In January of this year a piece of metal went in my eye. 
“It's very distressing… in the beginning?”
“Well not really… I haven't felt… the only stress that I got was when it happened, and I was well stressed. And it was pouring with blood, and the blood was running down my arm. I had my hand over my eye, and Graham took me to the hospital, and I was dripping all over his seat and everything. And it was total agony. So all the way down here, and even going into the surgery, I was getting hot and cold. I was in a wheelchair waiting outside the surgery and they had to wrap me up with loads of blankets because I was froze. 
Quite anxious, and I said to the wife, I said, ‘Am I doing the right thing?’ I said, ‘Do I want to get rid of this?’ And we spoke to you, and we said yes because cosmetically it looked a mess,  it was never going to look pretty at all. I’m never going to get my sight back in it because of the damage that was done, so the only ways forward. And forward is taking that out putting a false eye in, and looking as normal as you can possibly make me. And feeling confident about life again.

First post-operative clinical visit

Nurse speaking with patient
“…this is right I’m just going to wash my hands.  We’ll clean the eye because we've
just taken the pad off of it, and just have a look at it. Just have a look and see if it looks nice and healthy,  and then check your vision and the doctor will be able to see you after.” 

Doctor speaking with patient
“We're just keeping a watch that the wound has healed well, and what we'll do is we'll send you up to the ocularist. So, I'll fill up the form now and we'll send you up to our oculoprosthetic team. That means you'll be four weeks from the day of surgery,  and if the wound has healed well they will fit you with a temporary artificial eye.” 

Ocularist speaking with a patient
“…Try a few just see what ones that fit best…”

Once the socket has healed, normally after 6 weeks, a temporary artificial eye is fitted.

Ocularist speaking with a patient
“… afterwards, and we cut the colour match down so it's the same shape as one we tried in. Just let that settle in for a minute. It's moving about a bit, it's not really designed to move, it's not really as it's not a moulded shape… but it’s not looking too bad for a temporary…”

Permanent prosthesis fitting. On your second visit a moulding of the socket is undertaken, by which time all residual swelling will have subsided. This is done to ensure a perfect fit.

Ocularist speaking with a patient
“…before I do that I need to create like a wax shield, so that we've got something to hold the material in place. Okay, give it about one minute and it should be set to a nice rubbery texture.”
“Did that do the back as well?”
“Yeah, it just fills up the whole socket there.  Excellent, very good. It's just an impression of the back of the socket. 
“Oh, oh! You put that in the hole, and it went through the hole?
“Yeah, it went through the hole to the back of the shell. What I need to do now is just measure the diameter of your iris so we know how big to do the painted unit… I got a small black disc there, just painting the iris onto that disc, and then we had one of those cornea units. See them little units, they’re domed units, we add one of them to the top. Then we insert that into the shape….
“…top of base colour then I put one of these units on here, and it just gives us a rough idea of how the colour coming along. We can judge it with you. Just stare at my nose for me. Right, not bad we want to just bring that brown out a little bit really. 
“So, this is the impression that we took,  with acrylic material. And from that we made a two-part plaster cast. From that because the material tends to shrivel up and shrink after a period of time. So, we got our two-part moulding now. Then what we've done, we filled this with a molten wax; so the wax has now cooled down and basically what we ended up with is the wax impression; same shape but in a wax material. We can try this…”

A normal healthy socket appears pink in colour 

Ocularist speaking with a patient 
“…look right down to the floor for me, excellent. And right up at the ceiling. Excellent, well done.
“…there straight up my nose for me. And look right up at the ceiling. And down to
the ground. And look from side to side. Right over that way, and go straight at me. 
I mean it's moving about when you're looking left then right, which is a good thing. 
“So, we've got two different units. We've got the wax shape and we got the painting, so I want to put them all together now and see how it looks.
That stalk tells us what way you're looking, so I can adjust that, because the iris may be positioned correctly, but it might be just gazing upwards.
 “We would still like to see you every 18 months after supplying the eye. Because it’s acrylic we can polish the material, give it a cleaning. And we can like check the fit.”
 

Although the artificial eye expert will provide instructions to all patients on how to clean, insert and remove the artificial eye, you will not be left on your own to manage. The contact number for the artificial eye specialist and the Adnexal sister will be available to you.

 
Ocularist speaking with a patient 
“You can wear it all day and you can sleep with it in. As long as you just take it out once a day just to give it a little wash. All right? There's nothing to worry about. I'll show you how to insert it and remove it. It's not as difficult as it looks.
“So, we're giving you one of these to take with you, it just shows you how to keep the eye clean. Something about the dots at the top. Our phone number if there are any problems, you can always get in touch.
“I'll give this this eye polish and I'll get you some lubricant, which I won't forget this time! 
“Just washing with liquid soap, Fairy Liquid or anything like that. And just wash it with fingers under tap water, really no problem. Just keep the surface nice and clean.

Every 18 months it is advisable to visit the Prosthetics Department to have your prosthesis polished to enable a smooth blinking over the artificial eye. Should there be any concerns about the fitting you can contact either the Prosthetics department or the Adnexal Department, who would be happy to provide advice or arrange to see you.

Ocularist speaking with a patient 
“So, if I asked you to hold the mirror there, like that, and I'll show you how to insert it. Here’s the eye there, like this. So the back of the back of the shell is concave, in other words it's been scooped away so it's not putting any pressure on the implant. So, it's giving the implant time to heal. 
“You’ve got this tiny black dot there, that's the top. When you insert it that black dot has got to be facing upwards. If the black dot is not facing upwards then the iris wouldn't look central, so to keep the iris nice and central you want to keep the dot facing up.”
“It's the narrow side into my nose.”
“Yes, you got the pointed area towards the nose and the dot facing upwards, okay? As long as you keep it like that it should be fine.
“Now have a look in the mirror, then what I'm going to do, I'm going to lift up
your top lid, okay? I'm not going to do it from your eyebrow, I'm going to I'm going
to put my finger right near your lashes, the eyelashes right near the lid margin, and lifting it up.  See what I'm doing? I'm creating a big gap.”
“Make a nice cavity there.”
“The bigger the gap that you create, the easier it becomes. And then you push the dots up into that gap. So, you push the dot into the gap until the iris begins to disappear, then you can let go the top lid. And while holding the eye up you can just
pull that bottom lid down, and it just sits in like that.  And I'll show you how to remove it, I mean it's quite easy to remove with your fingers, but I can give you a suction device if you find it difficult.”  

A small device, known as a plunger, often used by contact lens patients, can be provided to a patient if they find the task of removing the artificial eye difficult. The plunger acts as a suction adhering to the prosthetist and aiding gentle removal. 

Ocularist speaking with a patient 
“What I'm going to do, I'm going to pull your bottom lid down, not outwards but just pull it down and Inward, and push it in and just pull it across. What happens is it goes
underneath the eye, gravity takes over and it just slides out.” 
“I'm left hand if that's a problem?”
 “It's better to hold on the side of where the prosthesis is going. So what you want to do really is hold it like I did there like towards you. Like that, so you’ve got the dot like that. In thumb and for finger, like that. So you’ve got an area there to push up into your socket. 

[General conversation as patient places prosthetist.] 
What you do is you bring that round the top of the head and go… right that's it excellent. And the bigger… that's a lovely gap. He's going have no trouble.
“My fingers are in way” 
“That's right and push it up, now you can let go of that top lid and push the eye up and pull the bottom lid down while you're pushing the eye up. I don't think you going have any problems. and you want to pull that bottom lid just a little bit down.
“Proud of that”

“Although we’ve supplied you now, and you’ll be discharged from us, we’d still like to see you in about 18 months to two years. So that we could have a check-up, to see if it's still fitting fine we can give you another polish. another clean because you’ll get build up with marks and scratches.” 
“No, it doesn't it's not uncomfortable at all it feels as right as you can get it right, I feel.”

Consultant speaking with patient

“Okay, so you've had the eye removed and you've had the implant put in and now you've had your prosthesis, your artificial eye made. Excellent. The other eye looks perfect. Now can you take that eye out for me?”
“I’ll do that now”
“Perfect, excellent. Now let's have a little look inside. 
Look to your left and to your right, and look up and look down, and left and straight. Well I think it looks pretty good. The movement is fair, as we said you'll never get perfect movement.”
“it won't be exactly the same.”
“But the movements that you get looking at people is pretty good.”
‘Well people say they can't see it, you know, if I didn't tell them they wouldn't know.”
“Well I think that's true, I don't think that's people just trying to be nice to you. I think it looks pretty good.”
“I think to myself it looks very nice.”

Moorfields team speaking with patients at home 

Tom

“Hello Jasmine.”
“Nice to see you.”
“Nice to see you again.”
“Well, here we are Tom in your lovely houseboat on a gorgeous Sunday afternoon. “How have things been?”
“It’s been going very well, a lot better than I’d imagined really, I had a three – four month build up, before the operation, when I knew I was going to have to have it done. The whole time I felt fine, it was just worrying about what it was going to be
like afterwards. Just the fact that you know that ‘I've had cancer’ and it's sort of giving me a bit of a check, you know?
People my age tend to just think they're invincible and go out partying every weekend, and not really looking after their bodies that much. But it's just rammed
home that we're not invincible, and things like diet and lifestyle actually can… well I’ve got to look after it. 
“How about some of your activities? What are some of the things that you’re enjoying at the moment?”
“I'm about to take part in a sailing race, which is going to take up all of July. I've got three weeks of training, and then a week-long race. And that's been nice to have something to focus on. I've done some training stuff for it.”
“So, where is it you're going?”
“To Norway. It's a place with Fredrikstad in Norway.”

David

"Hello Mr David Kent, I'm Nicola Dunlop from Moorfields Eye Hospital. We're just here to find out how life has been for you since experiencing visual loss.” 
“I was 18 when I had my first bout of surgery to combat a problem that I had growing up. Unfortunately, as a consequence of the surgery that I had, there were some complications, that resulted in further episodes of surgery that unfortunately result in total sight loss. So now, in my mid-40s, I'm totally blind. Funny thing was that, on the spur of the moment, talking about tins of beans being the same as tins of other things you can end up, and I have done, with some pretty startling food combinations. Like tomato soup and pineapple chunks, custard and kidney beans. I don't think so!
“Okay so, what do you got here, in the kitchen, you've got a spice rack and you might think yourself ‘oh my goodness me, how the heck am I going to know what spices are what?’ Easy! What we have here is a talking barcode reader. So we can pick any one of these off here, a jar of spice, common garden jar of spice, there's a barcode on here. We put the barcode against it, it tells me that it's basil. A normal commercially available microwave the only difference is [microwave speaking reporting the time and function mode].
“Okay, so making a cup of tea you think ‘how am I going to know when the water has come to the top of the cup?’ Easy! This is a liquid level indicator, and what this does it has two terminals on the end and when water comes into contact with these it emits a signal to let you know that you've come to top of the cup. 
“So, talking about gadgets that allow you to kind of carry on day to day, one of the things is a talking colour detector. So, you can plan what you want to wear in the day. I'll just try it out on Nicola’s shirt here [device speaks], and it tells me that Nicola’s shirt is light blue. I hope that's right.
“It is right. Yes”
“Being blind doesn't mean loss of dignity.” 

Female patient

“What is it like for you to explain your appearance?”
“When we have open days at school, or I'm doing something that I'm very much on view,  men will talk to you and you know they’re talking just to you. Women, you know, they see. They’ll talk to you and they won’t say,  and you know they are bursting to say ‘What's going on here?’ 
Children, little ones, absolutely direct saying ‘Why does that lady look like that?’ ‘Why has that lady got one eye?’ And you see the mothers going ‘What? Don’t be silly!... oh, I am so sorry.’ And you just… Children are children and they speak out
because they're curious about the world.”
“Were there any life habits that you had to give up?” 
“It hasn't changed my life at all. I just, I've had an operation and I've just carried on.
“So you put your make-up on the first hard thing you have to learn is to put on eyeshadow with that open, which can be difficult to begin with. You get used to it. And then mascara is the same, you need to put it on with your eye open and that's alright and then it's really hard to get that mascara brush back in the pot. And then I draw a pencil lining.