For family & friends of complications patients

(Posted: Apr 2003)

Peek into the mind of the unsuccessful laser surgery patient

Even before trying to look through their eyes, you need to be able to peek into the mind of the person who is experiencing unexpected problems from laser vision correction, whether temporary or permanent. Here are some of the stages they may go through in the days, weeks and months following their surgery:

Trauma: They went into surgery expecting, of course, to be just another routine case of the "15-minute miracle", trading a few minutes of discomfort for years of glasses- or contacts-free vision. They were probably assured that healing would be rapid and within a day or two they would be absolutely fine. Now, everything has turned out differently and they’re almost undoubtedly experiencing some shock from it all. — Unlike cosmetic surgery, the procedure affects something that will touch all aspects of all their waking hours — their vision. Unlike glasses, they cannot take their eyes off.

Bewilderment: There is no worse aspect of the post LVC experience than having serious problems not taken seriously and this is so directly the reverse of what they would have expected in the event of a problem that it adds considerably to the shock of it all. Far too many of the patients we know (including ourselves) found that serious disruptions to our vision were caused no concern whatever to our surgeons. We, and they, simply could not understand it. We later, of course, learned about higher order aberrations and began to understand why things that were dramatically affecting our vision weren’t readily visible to the doctor with a basic examination, but that still does not begin to adequately explain their nonchalance in the face of our acute concerns.

Denial: They may be convinced their problem is temporary — a healing problem which will pass when the condition clears. Misdiagnosis may be the basis, or the reinforcement, for this belief. And the practicality of the situation makes it almost impossible to avoid. In the early stages, one CAN’T know whether the symptoms will last for weeks or months or be permanent. One never quite knows when one’s passing the point where this was a possibility and into the realm of long-term complications. They may continue for month after painful month to be be torn between wanting to hope that their eyes will improve, and needing to have some certainty one way or another so that they can make decisions about care and treatment and practical matters. Denying the possibility of a long-term condition for which there IS no real fix may keep them in a perpetual state of waiting — for months and even years.

Frustration and anxiety: Lack of reliable information — one of the greatest difficulties they will face, whether they know it or not — will continue to be one of the major triggers for anxiety. Then there are all the practical matters to worry about. They are probably worrying about everything from how they’re going to drive home tonight to what the long-term impact on them could be. Whatever the specific worries, there is no doubt that a threat to their short- or long-term vision is likely to cause intense stress.

Depression: At some point they may just get overwhelmed with it all and start shutting down. This process may or may not be visible to people around them. It may be an overtly emotional process or it may manifest only in physical symptoms. They may be feeling very low, thinking it was a foolish decision. They are likely to be berating themselves for not having done more research, or not having listened to specific warnings, or not having sought additional opinions. They almost undoubtedly think they have made one of the worst decisions of their life and one which may well impact them the rest of their life.

Look through their eyes

I have to generalise a little bit here because of course every patient will have slightly different symptoms. I will assume that your loved one has certain key post LVC symptoms, which are GASH (NVD), ghosting, loss of contrast sensitivity, and lost of best-corrected visual acuity and try to give you some insight into what they are like.

If you have never needed to wear contacts or glasses, you will probably have no real frame of reference for any vision problem. Believe it or not, that may actually make it easier for you to understand your loved one’s vision — with you, we can start from scratch. Those on the other hand who have worn glasses or contacts, have a simple frame of reference. The world, or at least part of it, is either blurry (without your glasses/contacts) or not blurry (with your glasses/contacts). You can either see better near (short sight) or far (long sight). And, most importantly, however much you dislike those glasses, you can always put them on and see well.

For the LVC patient, all the rules have just changed.

What is GASH (NVD) like? This is the single most common LVC problem. GASH is an acronym for Glare, Arc, Starburst, Halo (and NVD stands for Night Vision Disturbance, the term most commonly being used in medical circles now for this phenomenon). Basically what it amounts to is that at night, all light sources create some very strange phenomena. There are really two problems. One is that the distortions that are created obscure everything around them — whether for a few inches in diameter (for example, a tiny indicator light on a CD player may send off little rays of light all around it) or for yards (like the headlights of an approaching car, which may create starbursts as high as a house). That makes it difficult to see and probably impossible to drive. The second problem is that the distortions themselves are so distracting. It’s difficult to explain, and responses are very, very individual. Some people are not disturbed by a moderate amount of GASH even if it is significantly obscuring their vision. Others find it emotionally almost unbearable. People with GASH dread the winter because of the long nights. They dread getting into a car. They dread driving or walking through city streets at night with lights flashing at them from all directions. — If you go to the website at Surgical Eyes, there is a very handy simulator your loved one can use to try to create for you exactly what their GASH is like.

What is ghosting like? Ghosting is a kind of double vision. Everything appears to have a second, slightly faded image of itself slightly offset from the real thing. For print, it’s like a horribly exaggerated version of a shadow font — with the offset stretched and going in another direction, such as directly above or to the left of the real image. When trying to read signs, it creates a curious effect. It doesn’t necessarily make things unreadable, but it makes them disorienting. Since it’s often combined with some of the other problems, the background may be washing into the letters which makes things even worse. They might be able to read things but have to stare at them much longer to make them out, or even be able to read them relatively easily but just be conscious of something not right, a sense of strain, as though they know their brain is having to work triple-time to process the information it’s getting and try to fuse everything into a coherent image. For other things, no, it’s not as though they see two of everything — not quite. For skinny things, like antennas or flagpoles or even statues at a distance, they probably DO see two. But for other things, since it all overlaps, it may be more like a strange kind of obscuring or blur. Suffice to say nothing looks RIGHT. They may have the sense that there’s a clean image underneath it all somewhere but there’s just too much noise getting in the way. This will affect everything from the mundane to the glorious. They will hate to look at the view of the moon you are pointing out because to them it looks so awful, it is just a reminder of what they have lost.

What is loss of contrast sensitivity like? You’re wearing a black pullover and black trousers. They can’t see where the pullover ends and the trousers begin. They are wearing one black and one brown sock because when they opened the sock drawer this morning, it was just all black to them. It’s evening, and you walked in the door, and they can’t make out the expression on your face. Don’t ask their help putting up wallpaper, because they won’t be able to see where the bubbles are that need smoothing out.

What is loss of best-corrected visual acuity like? If you’ve never worn glasses, try putting on a pair of very weak reading glasses and look through them into the distance and imagine what it would be like to see that way forever. If you wear glasses, take an old pair with an outdated prescription and put them on and tell yourself that this is the best you will ever be able to see. Loss of best-corrected visual acuity doesn’t mean you see worse without your glasses. It means glasses can no longer fully correct your vision. You will never again be able to simply put your glasses on and maybe push them a little further up your nose to see better. It doesn’t get any better, even with the best glasses or contacts there are. The world is destined to be a little fuzzy ever after this.

Feel their eyes

You have just woken in the morning. Your eyelids try to pull themselves upwards as they normally would to open your eyes. But they can’t. They’re stuck. Reflexes kick in and they pull harder. Your eyes feel as though the eyelids are glued to them and the eyelids are pulling off the surface of your eyes in order to happen. In fact, that actually is just about the right description, because cells are probably being torn off your epithelium.

You fumble for some eyedrops on the nightstand and douse your eyes all over. It stings terribly because the surfaces have got so badly dried out in the night.

You get up and start preparing a hot compress. You do "lid scrubs" with Johnson’s baby shampoo. You express your meibomian glands, which you’re rather proud of yourself for mastering but you detest every moment of it and deeply resent that you have to do such things at all.

Everywhere you go, you have little vials of eyedrops and every so often you open one and dump some in your eyes.

You have your sunglasses on even before you step outside and you flinch at a breath of wind.

At the office, the heat is running full blast (it’s January) and the air is dry as a bone. You’ve drunk two litres of water trying to keep hydrated, and no coffee which you know dehydrates you. You know you’re dangerously over-dosing your eyes with drops that are diluting your own tears which have oils that keep them from evaporating and it’s just making everything worse but your eyes are parched, burning, aching, throbbing, itching, and you just don’t know what else to do.

You forego joining the others at the pub after work because you know the smoke will be intolerable on your miserably exhausted overworked eyes.

You arrive home and turn on the humidifiers. You take a hot shower just for the sake of getting a room all steamy to give some relief however short-lived to your eye surfaces which are screaming for mercy. You do another soothing hot compress.

You smother your eyes in gel and cover them with an eye guard and drop into bed, hoping against hope that you won’t wake up in three hours’ time with an abrasion.

Hoping against hope that someone somewhere will one day find a better remedy for dry eye. Cursing the day you had surgery. Praying that the clinics are testing and screening their new patients more carefully than they did when you were told you are a "perfect candidate".

Learn the bare basics of laser vision correction

If you really want to help your loved one we ask that you take half an hour or 45 minutes to educate yourself in a few easy steps. We have a nice little pre-packaged crash course all ready for you and we promise it won’t take long:

Eye Anatomy for Dummies

Vision and Glasses for Dummies

Laser Surgery for Dummies

Complications for Dummies

Start understanding post-operative care and its hurdles

To set the stage, let’s talk for a moment about the care your loved one is receiving from their surgeon and his staff.

We suspect you would be shocked and dismayed to know a fraction of the dismal realities faced by many LVC patients who just want to know what’s wrong and what to do. Perhaps this is not the case with your loved one (if so, do drop us a line and let us know what excellent doctor is providing such good post-operative care — we want to know). We will not, therefore, try to educate you about the scenarios that are all too common in post LVC care, for fear you might be tempted to think we are exaggerating. We ask only that, whatever your loved one tells you about their experience with their doctor, you simply believe them, and do your best to piece together what is happening, without using your own experiences of doctors as a frame of reference for what is happening. Rather, think of their clinic and surgeon as service providers whom you loved one has paid for a service. Judge for yourself whether they are getting their money’s worth and, most importantly, whether they are being properly looked after.

Next, let’s have a look at complications and their treatments. Go into our All About Complications section. See if based on what you have been told you can identify which category, or categories, of complications, apply here. Read the introduction to that section and, if you’re interested enough, read about the specific problem(s) that apply to your loved one.

Help formulate a plan

Have a look at our section entitled Roadmap for the New Patient. Don’t bother reading it all, just glance through our suggested 3 goals for the short term, intermediate term, and long term. If you think this may be helpful, or suggestive, use it to help your loved one focus on the most important individual tasks applicable at any given point in time so that they are not overwhelmed with all the problems at once.

Help with research

Perhaps your loved one enjoys a good research project. They are to be congratulated — that’s a very convenient inclination.

More likely, they have far too much on their plate at the moment to be researching all aspects of the conditions they might have and what might be done about them. Just coping with their day-to-day practical issues and their follow-up appointments with their doctor is enough for the moment.

Research is one of the most valuable things you can do for them. It’s time-consuming, can be exhausting and disappointing when it’s for yourself but interesting when it’s for someone else as then you can afford to treat it simply as a problem or a mystery that you’re trying to solve. Start with this website. We’re just patients, not doctors, and quite possibly the site may give you more questions than answers. Fine, proceed to the links library and start digging, look for more informative websites, for site on which you can search for peer-reviewed literature on the pertinent subject or subjects.

Support them as they make decisions about treatment

Your loved one may have some difficult decisions in store. It may be as small as deciding whether to try punctal plugs, or as big as whether to travel to another city to an RGP specialist or even have more surgery.

Whatever their situation, they will almost undoubtedly appreciate a sounding board for their thoughts about it. There are so many advantages and disadvantages to weigh and they may or may not be getting any actual professional guidance. Most likely, they have discovered by now that they must take charge of their own care, which has the advantage of putting them in control and the disadvantage of giving them all the responsibility.

You can help them by assisting them with research on the treatment they are considering pursuing, by finding practical ways to make it possible for them to pursue it, by giving them the confidence they need in their own judgement, and even by a cautionary note if you feel they are rushing into something simply because they are under pressure.

On the other hand perhaps they don’t want any help with the treatment decision because they are already hearing too many viewpoints and simply need to decide for themselves. Just be there for them and let them know that whatever they choose you will support them. Know that these are not small things for them — they are decisions that will affect their quality of life and their activities at all hours of the day.

Be sensitive to the everyday impact of their complications

You cannot imagine how much it will mean to your loved one to know that someone actually understands enough about what they are going through to anticipate, unprompted, things that will be harder for them or unsuitable for them.

Severe dry eye? Suggest a humidifier for their bedroom — better yet, go out and buy one, a good quality one.

Notice what eyedrops they are using, and when they are running low? Buy some for them.

Driving somewhere new? Check it out on a map beforehand so that you don’t have to ask them for help finding the way — craning and straining to read signs is the last thing they need.

Planning to go out? If they have GASH, the cinema probably isn’t the greatest suggestion. Spend a few minutes on your own thinking of things that their vision will interfere with the least — well-lit environments and where they do not need to see anything too far away are best. Surprise them with tickets to the opera — good seats, close to the stage, and a pair of opera glasses.

Don’t point to a funny sign or bumper sticker and laugh. Either read it aloud, or just pass it by without comment.

Wherever you are, remember the challenges your loved one may be facing. They will love you the more for it.

Be vigilant for depression and anxiety

You need to know that a great many, perhaps a majority, of people who have experienced a poor outcome from LVC suffer from clinical depression and/or an anxiety disorder at some point during their post-operative course and require medication. This has nothing to do with their character or personality or the idiosyncrasy of their reaction to the situation. This is a routine physiological reaction to severe stress such as that associated with a major shock and life change. It affects people of all ethnic and educational backgrounds and professions. Type-A personality over-achieving professionals are not by any means immune. Men are not immune. No one is immune to the possibility of depression.

You need to be on the alert for possible signs of depression. Hopefully your loved one is in tune with what’s going on and discusses these things with his/her GP, but that is not always the case. They may be ashamed of their reaction to the situation and fear they are making a big deal about nothing. On the other hand they may not be conscious of experiencing any emotional reaction to the situation — its impact may be felt only physically and not in any emotionally perceived way. They may feel sluggish, have difficulty getting up in the morning, feel unmotivated, fatigued, uninterested in things they used to be interested in, sleeping more than usual, gaining weight. If you notice any of these things try to discuss it with them and encourage them to discuss it with their GP.