In a nutshell
Why I had LASIK — the short version
Why I had LASIK — the whole story
What I expected from surgery
My non-eventful surgery
My non-eventful healing
So... I hate to trouble, you, docs, but despite the perfect job you did, there seems to be a problem
Finding out what was wrong
Finding out more, and most importantly, why
Doing something about it
And that brings us to today
What if I could do it all over again — what would I do differently?
Updates: Oct 2003, early 2004, and November 2006
In a nutshell
Hello, I'm Rebecca Petris.
At the time I wrote this story, in mid 2003, I had been living in England with my family for a couple of years, so if you see a lot of Britishisms, that's why. We have since moved back to the States and I have posted a few updates to this story at the bottom of the page.
I had bilateral LASIK in July, 2001 in San Francisco. Though the surgery itself was uneventful, and I healed well, I have faced unexpected and severe vision problems and eye pain ever since which has profoundly altered my life. I have included below an outline of my experience.
As I embarked on efforts to find diagnosis and treatment — efforts which, as is so often the case with difficult medical problems, inevitably took me online, I was shocked to find so many other people not only facing similar problems, but almost entirely without answers to their questions, and, worse, without treatment options. I read and listened to story after story — first tens, later hundreds of patients. Their collective experiences, from inadequate screening, informed consent and "consultation" procedures, to inattentive aftercare to strained relations with surgeons and staff to bewilderment at the dearth of information to a terrible sense of abandonment and isolation, soon began to sound all too familiar. Worst of all, I became thoroughly convinced that a great many of the problems I was witnessing were entirely preventable. I became and continue to be deeply troubled at widespread aggressive marketing practices, lack of basic knowledge and specialist training amongst surgeons, inability or unwillingness on the part of surgeons to give patients the personal risk assessment all patients have a right to and without which no patient can make a truly informed decision, and the often casual approach to the informed consent process.
A great many patients, of course, have had successful experiences despite the industry's shortcomings. However, for those harmed by this lack of professionalism and proper medical ethics, the ultimate insult, I found, was the almost uniform disregard with which they were treated after surgery if they had any optical or ocular complaints induced by surgery. So long as the surgery reduced the patients' glasses prescription as intended, surgeons and clinic staff did not listen. Double vision, impaired night vision, severe dry eye, and a multitude of other complaints listed in the Complications pages of the section written for patients — such things, I found, were simply not in many surgeons' vocabulary. If you can read the 20/20 or 20/30 or 20/40 line on the chart, you are deemed a success, irrespective of whether your vision and/or eye health has been permanently compromised in any other way or ways.
These experiences persuaded me that there is a great need of services and information both for candidates who are considering having surgery and want truly balanced information, and for patients with problems who cannot find answers.
For candidates, searching the web for independent, accurate and most of all comprehensive information is a bewildering, time-consuming and often unfruitful exercise. Most sources represent polar opposites: on the one hand a vast array promotional material of all types and descriptions (often so cleverly packaged that it is impossible to determine whether it is in fact industry-provided and industry-funded), and on the other hand a growing collection of sites put up by disgruntled, disillusioned patients whose primary aim is to persuade people not to have laser vision correction. Most consumers, of course, do not really want to be persuaded for or against and many are not open to rhetoric from either the industry or consumers - they just sincerely want to get enough information to feel that they can judge for themselves, not necessarily whether laser vision correction is good or bad but whether and under what circumstances it might be suitable for them personally. That is the primary motivation behind the establishment of www.lasermyeye.org: to help consumers educate themselves.
For patients, it became very clear to me that often the best source of information for patients, many of whose concerns are more practical than technical, were other patients who had already been through the process and had learnt the ropes. But I was concerned that unless patients found others like themselves willing to educate them, or unless they participated in online forums which many may find too intimidating, they simply were not getting the information they needed. That is why the first part of the website that I wrote was the Patients section, which is intended to be a non-technical but comprehensive FAQ page for patients with complications and adverse effects.
These then are the experiences which led me to join up with Maggie and establish LaserMyEye: to give candidates the tools they need to be cautious and fully informed consumers in the confusing world of commercialised elective medicine, and to help patients with complications and poor outcomes get the information and assistance they need efficiently.
Why I had LASIK: The short version
I had LASIK because I had been having problems with both contact lenses and glasses for years and wanted to have good vision more consistently. Although I had always resisted the idea of eye surgery on grounds that it could not be appropriate or safe at my high prescription, the eye doctor who had been providing me with excellent care for a few years had long been advising me that LASIK was a good option to enable me to see better on a more consistent basis. My scepticism was steadily persuaded away and I became convinced that if I had LASIK, I would no longer be dependent on the contact lenses that had been so problematic for me but rather could finally have good vision with glasses, by reducing my prescription to a low enough level that glasses would work better for me.
Why I had LASIK: The whole story
I’m one of those people who never believed laser surgery would be for me. I always listened with interest to conversations about it, from friends of mine having RK back in the eighties and early nineties to others having PRK in the mid nineties to the greater numbers having LASIK in the last four or five years. I found the subject fascinating. But as a high myope — whoops, sorry, it’s so easy to fall into this eye jargon — as someone who has always been extremely short-sighted, I knew that I was not a candidate for those earlier surgeries. Even when they started claiming LASIK was good for people with high prescriptions, I never really believed it. I just thought people with my prescription HAD to be higher risk. I always said to myself that I would never even think about having such a surgery unless I knew someone personally who was at least as myopic as I was and yet had had a successful experience. That’s very bad logic, of course (though it was only one of the reasons I was resolved not to have LASIK) but it doesn’t really matter, because in the end I did not stick to that resolve anyway.
So how did I come to change my mind?
Backing up a few decades... I started wearing glasses when I was five years old. When I was 10, I tried hard contact lenses, which my eye doctor hoped would halt the progress of my myopia (short sight) which was escalating quite rapidly at the time. But I couldn’t tolerate hard contacts — they made me so sensitive to light that I could not even step outside. Not long after this, I began wearing soft contact lenses and continued for more than 20 years. Those were not, however, 20 years of uninterrupted good vision and comfortable eyes.
For as long as I can remember, contact lenses, with glasses as a backup, had been a struggle and involved plenty of compromise — comfort, convenience, and most of all vision. During the late 80’s and throughout the 90’s in particular, I had a recurring problem with my left eye that the doctors never discovered a cause for. Every so many months (as often as a few times a year, but usually less) I would have this terrible flare-up in my left eye and could not wear a contact lens at all for anywhere from a day to a couple of months on end. During those periods I had to rely on glasses. This was well before those nice small frames came into fashion and I must say that I and my coke-bottle style lenses did not get on too well. My vision was not very good even centrally, let alone peripherally. Glass would have been far too heavy at my prescription, and the high quality light plastics weren’t exactly cheap (harking back to my starving university-student days). Time went on, and I spent more and more money and went through many eye products but I never got to a point where I had either contacts that weren’t subject to that pesky left eye problem, or glasses through which I could see well enough to be altogether comfortable, say, driving on a rainy night.
Flash forward again. After moving to San Francisco in 1996, and after a bit of trial and error, I found an optometrist who turned out to be the best I had ever had. She was young, bright, and professional. We got on well. Most importantly, under her care I had the best vision I had ever had in the soft contact lenses she prescribed. Not that it was exactly problem free. The left eye still kept acting up for no apparent reason. Glasses were still very problematic as a backup. I recall in particular a trip to New York that hammered this message home. I’d been delayed at the office and took a late flight, arriving in Newark after midnight, after which I had nearly an hour’s drive in a hired car. Long before the flight arrived, I had had to remove my contact lenses, which were sticking to my eyes like glue, so I had to drive wearing my glasses instead. It was winter and the roads were icy. I was driving along the motorway at about 70 mph. I saw the sign for my exit a hair later than I ought to have done ideally, but there were no cars about, so I cut across, swerving over the V-shaped white line just after the start of the exit instead of entering the exit neatly. Only, it turned out not to be a painted line. It was a curb. The results did not feel very good. Fortunately for me Hertz had upgraded me to some huge tank of a typical American "gas guzzler" which took it reasonably well in stride, considering how fast I was driving at the time. Driving a smaller, lighter car, I could well have rolled it.
Flashing backward once more: My optometrist, almost since we first met, had been raising the idea of LASIK as an option for me. She seemed very excited about its capabilities. I generally always had the same answers ready for her: "What’s the rush? Technology can only get better" and "I just have to believe it’s higher risk at my prescription" and "I’ll never even think about having a surgery like that until I know someone personally who’s had it". She said that she knew eye doctors — surgeons, no less — with higher prescriptions than mine that were having LASIK and they were completely happy with the results.
It all happened very suddenly in the summer of 2001. Between my optometrist’s whittling away at my resistance (I suppose more of what she had been saying had penetrated through my shield of nonchalance than I realised) and another left-eye flare-up and continued difficulties with the glasses, I just buckled. At a routine semi-annual exam, she again proposed it and this time I said yes. Three weeks later, it was done.
And that is how I came to have LASIK.
What I expected from surgery
Well, one thing I was certainly NOT expecting, despite all my surgeon’s efforts to persuade me to the contrary, was 20/20 vision without glasses or contacts. I simply did not believe they had the capability to get that kind of accuracy at a prescription like mine. I didn’t care what statistics he quoted me or how many similar cases he recounted from memory. I did not believe him.
I supposed he might get me down to, say, somewhere between 0.50 and 2.00 dioptres of myopia. That would have been ample for my purposes. At that level, I would be much less dependent on contacts. No more gritting my teeth in anticipation of another unexplained inflammation in my left eye — I could just pop on a pair of thin glasses, be comfortable and see well! No more specially made super-thin-but-still-far-too-thick spectacle lenses with poor peripheral vision and glare at night.
I expected to need a couple of weeks for my vision to settle down. I proposed having the surgery done the week before I was to go on holiday for a couple of weeks. My optometrist persuaded me against it: You’ll have the surgery on Friday, she said, and you’ll be absolutely fine well before Monday — there is simply no way it will interfere with your job. Besides, she said, I really don’t want to have you far away during the recovery period. Fine, I said, I’ll stay home, but I really think I need to allow time for healing. She insisted it was absolutely routine for people to go back to work on the Monday.
And that’s really all. I had no reason, certainly was given no reason, to imagine that my high prescription or any other factors gave me a higher likelihood of any other potential problem than simply that they could overshoot or undershoot the target, in either of which cases I would simply wear glasses, and to me, that wasn’t a problem at all — it was my baseline expectation.
Non-eventful surgery
I have often thought that if I had only had a good vision outcome, I would be a great walking advertisement for LASIK because I was so unfazed by the process itself. My brother, who had had LASIK the previous year, cringes when you start talking about suction rings and microkeratome blades. Not me. I revelled in the details and thought it was all fascinating. Certainly, the part where everything goes dark is not the pleasantest of feelings. And, when they did the second eye, the anaesthetic seemed to be wearing off because I could feel a bit of pain — sort of like when I had my wisdom teeth removed and no amount of novacaine seemed to help. But for the most part, it was fine. The tensest part is simply trying to keep your eye still. They were using an eye tracking laser, but it’s still important to keep your eye fixated on the light.
Long story short, the surgery was completely uneventful. The flaps they cut — well, I’ve had them analysed with VHF digital ultrasound and they’re actually very good. No microkeratome breakdown like you sometimes hear of. No reason to believe the laser was in a bad mood. No problems laying down the flap. A picture-perfect surgery, in fact.
Non-eventful healing
In the weeks and months following LASIK, there were no adverse events. I did not get DLK. I did not have oedema, I did not get any infection. I did not have any irritation. My corneas were (as I was to be told over and over again after each slit-lamp exam) "pristiiiine".
Fantastic. Another brilliant outcome. Another great success to add to the statistics. Within days of surgery they had dropped into the post a little laminated card for me to carry with my driver’s license indicating that I had had laser vision correction and was no longer required to wear the corrective lenses indicated on my driver’s license.
Driver’s license? Wait a moment. Just one little thing was wrong: Starting from the second day after surgery I could not see to put the key in the ignition, much less read the roadsigns.
But, before I forget, I should state that the morning after surgery I COULD read the alarm clock. I suppose that counts for something, doesn’t it?
So, I hate to trouble you, doc, but despite the perfect job you did, there seems to be a problem.
Just that I can’t see.
When I say "can’t", of course I don’t mean I was blind. But there is a great deal of ground between normal vision and blindness, as I have learned only too well.
I’m going to attempt to describe all the aspects of vision that have changed for me, all the things that deviate from what I think of as "normal". Perhaps none of these will sound serious much less debilitating. But adding them all together, they do make life considerably more challenging.
First, there’s the double vision (monocular diplopia, to be precise, and what is often called ghosting). This was and is the one of the most difficult parts even on its own. I did not even realise that that is what was going on until quite some time after surgery. It was not static at all. Initially it was only at quite some distance that I actually saw two distinct images of things — for near vision purposes I can only describe it as a kind of distortion that was much different than the short-sighted blur I was used to. In the early weeks and months my sense of it was that there was a clear image "underneath" things somewhere but that there was noise preventing me from getting to it. Two things were the biggest problem: Reading signs and recognising faces. I just couldn’t. Not even a hoarding, or my husband on the other side of the room. — Over the first four months, this aspect evolved constantly. A traffic light was first blurred, then doubled but overlapping, then gradually as the days passed the two images pulled further and further apart. Sometimes there were four or five of them. Funny configurations. One reminded me of the crab-shaped image on the road signs pointing the way to Fisherman’s Wharf. One looked like an upside down Mickey Mouse head. — If I close one eye, I can see exactly where the secondary image or images are in the other. But they change position all the time.
Second, there are the fluctuations. I mentioned this already about the double images or ghosting, which change day to day. But everything about my vision changes day to day and week to week and within the day. Even if glasses did help (they don’t), I would have to have a dozen pairs to keep up with the changes.
Third, there’s the contrast sensitivity problem. This is easiest to describe in the context of home life. I can’t press my own clothes anymore, because I can’t see where they’re creased. If I look into my sock drawer... unless I shine a bright light directly into it, or carry it outside, all I will see is dark nubbly looking things. If you’re wearing a dark jacket and dark trousers I may have trouble seeing where one ends and the other starts. And whether in bright or dim light, everything looks a bit like a photograph taken with the wrong speed film.
Fourth, there’s this smearing effect. Streaky vision. Vaseline vision. Halos. There are many expressions for these strange effects and in my case each one that I have read of applies. Basically, it’s as though anything light-coloured (a white shirt, the large print on the cover of a book, a person’s hands, a newspaper, a blonde’s head) spreads this fuzzy smeary light stuff all around it, distorting anything within a couple of feet, and since there are light-coloured things everywhere, it just all runs together.
Fifth, there’s the light source problem. In laser vision correction jargon it is called GASH (glare, arcs, starbursts, halos) and is generally used to refer to visual distortions from light sources that people experience primarily at night. (For some of us, like me, it’s not just at night.) The best-known example is when a car is coming towards you, the headlights produce starbursts. Now, there are starbursts and there are starbursts. They can be cute little things that look like you used a fancy filter on your camera, and there can be house-sized monstrosities that block out all the other things you actually would like to see, like cars coming towards you. My starbursts tend towards house-sized. I’ve never been all that bothered about it, I suppose because I’m so much more affected by my daytime vision. But I feel pretty certain that if you had the night vision problem and only that, in the degree I have it, you probably wouldn’t be very happy about it.
Sixth, there are depth perception and balance problems. This kind of comes and goes, and was most severe for a month or two about six months after surgery. But it was more than severe enough to make itself felt. I suddenly found myself accident prone. Before LASIK I had never broken a bone in my life. Within a year of LASIK I had twice taken a tumble down a flight of stairs; once broken a toe; and once broken a couple of ribs. To a certain extent, I think that my brain has since adapted and I do not have the same problems with dizziness that I had at one point, though I still get disoriented at times trying to focus. I’ve learned to be much more careful moving around. If there’s a curb, or a step, I look down. I am much more consciously careful ascending and descending stairs particularly in dim light conditions and I try to avoid walking up or down stairs with my daughter in my arms.
Seventh, there’s the eye pain. A certain amount of this relates to dryness. It began to gently intrude itself on my notice about three months after LASIK. Later, in late pregnancy, it was screaming for attention. I would wake up in the night and not be able to open my eyes without first soaking them with a wet cloth. In the morning I would feel as though I needed a chisel to get my lids up — when I did get the lids up, it felt as though they were peeling the corneas off as they came up, and when I learned about corneal erosions this turned out not to be all that far from the truth. But even the dryness and surface pain are not as bad as the aching and strain, especially after a day’s work straining to read email, spreadsheets, documents, and databases, and trying to make out the red print in redline documents on my screen. My eyes hurt from the moment I wake up, and they hurt all day, and by the end of the day it’s just, well, not very pleasant. Some of this is because my right eye has very poor near vision now, while my left eye has slightly better near vision but is worse for distance, and the unevenness is a strain. Exacerbating this is the fluctuations, which simply drive me crazy. On days where I’ve got secondary images pulling in opposite directions (say, 09:00 in the left and 02:00 in the right), I sometimes just give up and put on an eye patch so I can read with just the left eye.
Eighth, there’s the dim light problem. This probably overlaps with some of the others like reduced contrast sensitivity. It’s just very difficult to distinguish detail on anything unless there is a fairly bright light shining on it. Bright daylight of course is somewhat better (except for all the other problems). Of course, we had a rather larger allowance of sunshine back in California.... At the time of this writing I am sincerely rejoicing in spring simply because it’s bringing longer days!
Ninth? Well, I’m running out of steam here. There’s other things, though most of them aren’t that big of a deal, Like seeing far more floaters than before. I remember once last summer where we were at Lyme Regis. The sky was cloudy and some gulls were circling rather high up. As a matter of course the gulls were just moving grey objects (I knew them by the sound) but it was kind of a shock to find I couldn’t tell which was a bird and which was a floater. I sometimes find myself swatting at a fly that turned out to simply be a floater. At this point I have concluded that it’s not so much that I have more, as that because my contrast sensitivity is so greatly reduced, the floaters are much more visible.
But then, I’m not short-sighted anymore. Although my best-corrected acuity is about 20/50, and the world looks rather different to me than it does to you, technically, according to the wavefront exams, I have no refractive error. My myopia was effectively eliminated altogether. Ergo, the surgery really worked quite well. At least, my surgeon certainly seemed to think so.
Finding out what was wrong
Flash back to the surgery. It was on a Friday afternoon. I saw the surgeon Saturday morning for a quick check. Everything was fine, and my vision was coming along nicely. But as my vision deteriorated rapidly the following day, I rang them first thing Monday morning and brought forward the next appointment. At this point, I was just starting to get a wee bit stressed out because the optometrist and surgeon had been so insistent I would be "fine" by Monday, that I had scheduled meetings with people who were flying in from various locations. We had documentation "bibles" piled up on a conference table in preparation for several days of review and I was beginning to wonder what creative alternative to reading them I was going to have to think up.
Anyway, the surgeon dilated my eyes and examined me and decided that I had accommodative spasm, which was described to me as a muscular problem that would subside. Fine, makes sense to me, but what do I do in the meantime? Take these drops. Fine, I take the drops, it makes things worse. I hobble through the week with handfuls of reading glasses at different strengths and my secretary taking dictation to help me with email, as ludicrously anachronistic as that seemed to me at the time.
For the next three months, my aftercare was provided by my optometrist. As her surgery was just down the street from my office (as opposed to the other side of the bay, where the surgeon was) it was quite convenient and I saw her often. She would examine me, declare everything was looking fine, and reiterate what the surgeon said: You have accommodative spasm. You see (looking wise) you have been myopic all your life, and your eyes aren’t used to seeing 20/20 so they aren’t focusing properly. Your eye muscles are locked in a state of spasm. All manner of bosh, in fact.
I let three months go by with no change either in my condition or in the story the surgeon was, via the optometrist, giving me. After awhile, I really wasn’t buying it. But there were many distractions. In August after surgery I was very busy with work, and also away on holiday for a couple of weeks. The second week of September, well, I involuntarily spent a week in New York that no description could properly describe. Later that month came our decision to move to London, and the remainder of the year was looking quite frantic. Meantime my vision was awful and showing no sign of getting better. I was getting more and more frustrated and was putting pressure on my optometrist. She and I both had calls into the surgeon and he was not returning calls from either of us.
During a business trip to New York, I got in conversation with a colleague about it. Long story short, through contacts of his I got a same-day appointment with an accommodation specialist as a second opinion. He examined me carefully, stated I had no sign of any accommodative or muscular disorder of any kind and that if I had it still would not have explained the symptoms.
He then told me almost the only truly practical big-picture facts I have ever needed to know: He told me very, very simply that my corneas’ optics were messed up by the laser; that there were surgical technologies in development that might help fix it in some degree but that I should not hold my breath; and that in the meantime the only hope for me was to get rigid gas permeable contact lenses, which might be quite difficult to do in my case.
That was not exactly the most pleasant day of my existence. I vaguely remember a colleague commenting, on my return to the office, that I was as pale as a pillowcase.
Finding out more, and most importantly, why
Sadly, my surgeon proved to be no help whatever. When I, after educating myself on the things that could be wrong and presenting him with the list of tests I required him to do, finally overcame his reluctance to acknowledge my existence (to say nothing of my unhappiness with my situation) he obediently performed all the tests. That is to say, all the tests except for the Wavefront measurements, because his scanner had not been delivered due to "delays by the manufacturer". Happily, all of the tests were negative. My topographies were "really quite nice". The dry eye tests were all negative. The Orbscans showed nice corneal thicknesses. Every test of every kind had a happy ending. How nice. Happy, happy, happy.
My optometrist at least cared. If she was not deeply concerned, then she must have been an awfully good actress, but I really do think she was concerned. The problem was she simply had no relevant knowledge or experience to advise me in any way usefully. Or did she? That is really the worst of the experience — it made me get these suspicious twinges, and I hate having doubts like this about people. Objectively, it is difficult for me to accept that someone who was as smart an optometrist as she seemed to be could simply perform slit-lamp exams and repeat this "accommodative spasm" mantra, which later became the "Let me know if there’s anything I can do" mantra, without ever, herself, really engaging her brain or her research skills to find out something about what was wrong. How can an experienced optometrist not have a word to say about topographies? I just don’t know and what’s more, sometimes I just don’t even want to think about it.
What put an end to all the ruminations was our move to London. By that time I was not in the least reluctant to put both eye doctors — and even the optometrists in New York and San Francisco who had been working on contact lenses for me — behind me and move on. Only it was not altogether that simple. I spent the next five months battling to get my records from my surgeon, for the benefit of whichever new doctor I ended up seeing. More than two months in advance of the move, I had requested copies of my medical records from every doctor I had ever seen in the San Francisco bay area and they had all arrived safely except — the records from the eye institute. On arriving in London I wrote to them. No answer. I wrote again. Politely. Perhaps my previous requests had been lost. No answer. I wrote again. Firmly. No reply. I wrote again. Firmly, plus quoting chapter and verse of California law about a patient’s right to his medical records. No reply. I sent a letter by express mail giving my surgeon an opportunity to save face by blaming it on his admin staff, but also making it clear that non-compliance within (however many days required by California law, I can’t remember) would result in my filing a complaint with the state medical board. Finally, results! I had a voicemail and a fax within 24 hours, and an express package overnight. I was furious to read in the letter that he claimed to have faxed the records on two previous occasions. They made the mistake of indicating dates and the fax number they had supposedly sent them to: my office fax number, where we keep records of all incoming faxes and it would have been easy for me to prove, if necessary, that they had not faxed the records on either occasion. Do you remember me saying that what I resented most about this experience was being made to feel suspicious? Under the circumstances, it was impossible for me not to reflect that the statute of limitations, which is only one year in California, was expiring in July, and that November through May my records (which, if I had intended to sue, would have been necessary for me to start building a case) had been withheld and had only been released to me after dead-serious threats of professional and legal consequences.
To condense the rest, I have seen several doctors to date. In all they number three ophthalmologists and maybe ten optometrists. Everyone has completely different answers. Most frustrating is that everyone says completely different things about the topographies, from "These are OK", to "Hmm, a central island" to "Looks slightly decentred" to "Gee, looks like a bug splat" to "Are you seeking compensation?". Boys and girls, really now! Is there no science whatever to topographical analysis? This is simply ridiculous! Wavefront analysis of course shows record-breaking amounts of of higher order aberrations. Great. Now that I know that, what do I do? Sure, it is nice to know that some concrete test results, with numbers and everything, unquestionably supports the idea that I have a vision problem, but the information still seems largely superfluous for purposes of finding any practical solution, and in any case the spherical ab mostly explains the night vision problems, not the diplopia in broad daylight.
I did eventually get a diagnosis that I have a reasonable amount of confidence in, but this was more than a year after surgery. Though I cannot get into all of the minutiae here, it centres on the size, centration and surface heterogeneity of my functional optical zones. It is NOT about bad or unpredictable healing on my part. It is NOT about some unusual feature of my corneas that no doctor could reasonably have expected. It is NOT about bad luck, either. It is partly about poor choices by my surgeon (i.e. ablation size for my pupil size, where he was limited by the laser he chose to use and by his limited knowledge, and improper selection of the point of centration) and in certain respects by poor execution. Most of all, it is about the particulars of the surgical techniques and equipment used in my case being boilerplate concepts applied in a boilerplate manner, rather than being selected and geared specifically for the particulars of MY eyes.
In short, I was given a commodity-type service where I needed a bespoke service. And they screwed it up in such a way that it’s very difficult to put one’s finger on.
Doing something about it
This was a difficult part of the story to write about. I can speak objectively, even absently about everything else. But solutions? It’s difficult to talk about, because describing where I am at means conceding that I have not won the battle... yet.
There are two fundamental parts of the problem: poor ablations, and big pupils. Personally, the big pupil part doesn’t concern me all that much. Sure, I miss my night vision, and because pupil constricting drops that improve vision were readily available, I tried them once or twice, but I quickly found I had no motivation to deal with my night vision because I could work around it — or perhaps simply because I had bigger fish to fry. My biggest problem by far is my daytime vision and the great difficulty and strain involved in reading. That potentially threatens my livelihood. Talk about motivation — well, there you have it.
So, I set out to tackle my bad ablations. Bearing in mind that it was October-November 2001 when I discovered I had them and that we were in the throes of selling our house and preparing for an overseas move between Christmas and New Year’s, I wasn’t able to do anything beyond starting to pursue the rigid contact lens option that my second-opinion doctor had recommended, and even that was a considerable stretch.
Before the move, I worked with the second opinion doctor’s contact lens specialist in New York (visiting him during periodic business trips there), and with a contact lens fitter in my surgeon’s practice in San Francisco when I was home, doing both in parallel during November and December 2001. I figured that if one didn’t work perhaps the other would. I remember what a thrill it was the first time I put in a pair of RGPs. People talk about the discomfort. I couldn’t have cared less about discomfort or even pain — I COULD SEE. I could read without eyestrain and headaches. I could make out the details of a person’s face at distances of ten feet or more. Emotionally, it was a tremendous relief to know that though I had had a surgical screw-up that had forever altered my corneas, it did not necessarily mean that I would, for the rest of my life, see as badly as I had been seeing for three months and more. It gave me hope.
I vaguely remember practically wearing holes in my first pair or two of RGPs. They talk about gradually increasing your wearing time with RGPs... first a couple of hours, then increasing wearing time by an hour or two a day. Not me. Pain? I didn’t care. All I wanted was vision. I remember being on business trips and wearing those lenses up to 20 hours in a day — and spending 15-20 minutes at the end of the day trying to get them off my eyes. It was only after a follow-up appointment, where one of my optometrists informed me point blank that it wasn’t altogether a good thing to have a gas permeable lens adhering to my eye like an octopus, and explained why, that I had an abrupt reality check and found that I actually needed to wait until I had acceptably fitting lenses before I started wearing them regularly, let alone for hours on end.
Then came the house sale, Christmas, the move, all in rapid succession. Bad as my vision was, my eyes were about the last thing on my mind.
Once we were comfortably settled in London, I picked up where I had left off. My intention at this point was to pursue two objectives in parallel: 1) get the best fitting RGP I could, so that as a minimum I would have a reasonable way to see clearly on occasions where it was particularly critical, but really aiming for lenses I could wear to work regularly; and 2) get a detailed diagnosis of what was wrong with my eyes so that I could find out whether further surgery was an option and if so, what the best possible surgical option was.
On the contact lens front, then: I had been e-mailing off and an with an optometrist near Dallas, Texas whom I knew to be simply the best world-wide in fitting RGPs on patients like me and, now that I was no longer under the immediate pressures of the move, I determined to try to see him. Based on two months of fitting with ostensible specialists, I was convinced that the only efficient way to get to the bottom of the RGP business was to go to the best without loss of further time. On a business trip in January, I managed to squeeze in a quick stopover in Dallas on my way between New York and the Cayman Islands (believe it or not the latter was business too — we were in the process of setting up a branch office there). Long story short, we established that it was worthwhile pursuing RGPs for me. I then arranged to come back for a week in late February. — I had a very productive week there in February by the end of which I not only had a pair of RGPs that were reasonably comfortable and provided excellent vision, but I was already building up wearing time and had a fallback solution (piggybacks — wearing a soft lens underneath each rigid lens — sounds awful but it’s not really that bad).
When I returned home, I did very well with the lenses. For a few weeks. Then I began running into problems. One lens, or both, would adhere, or be so uncomfortable that it was distracting me at work. Fine. I went for the fallback solution — piggybacking. It did very well. For a week or two. Then pollen season in London got into full swing. To the best of my knowledge I have never had allergies of any kind in my life. Now, when I put in the soft lenses, within a few hours my eyes were simply streaming with all kinds of nasty discharge and allergies seemed the most likely culprit — but at the time, being pregnant, I was unable to take allergy medications. I tried without the soft lenses again. Adhesions, extreme discomfort, you name it. My optometrist was as accommodating as they come — attempting to diagnose and propose solutions long distance, and often successfully — but the bottom line was that through no fault of his, between the apparent instability of my corneas and the soft contact lens reaction factor, we were getting nowhere. I determined to just be patient for awhile. Not that I had a lot of choice about it, of course.
Separately, on the diagnosis and treatment front, immediately after the move I started pursuing this with an exceptionally well qualified and innovative ophthalmologist who, interestingly, had moved to London just about the same time we had. Based on my topographies, Wavefront analysis and certain other tests, he was able to establish certain views on what the problems were. Ambivalent at first (because of the wide range of opinions I had been given, the details of which I will not bore you with here), I gradually came to have more and more confidence in his views (which I mentioned in general terms earlier — having mostly to do with characteristics of the laser ablations, and in part with my pupil size). Not that it really mattered by this point. I had fallen pregnant in January (incidentally, I still haven’t quite got used to this British expression "fall pregnant" which to my American ears makes pregnancy sound like a serious illness) and that was to put me "off limits" for any surgery for the following nine months plus however long I intended to breast-feed. So, any talk of surgery became academic.
The situation therefore devolved to a waiting game. Being pregnant for the first time carried with it its own share of excitement, of course. And, all the way through it I continued to be no less busy with work, and to travel no less often, than before, till a couple of broken ribs in month 7 put an abrupt end to the travel. I must say pregnancy is very hard on the eyes. The dry eye condition got to an almost unbearable point — and pregnancy meant I could not take any of the medications, like doxycycline, that are sometimes prescribed. The last two months of pregnancy, reading was extremely difficult. But somehow or other I managed. Nothing like hormones to keep you going.
A little over a month after Chaidie was born (with a bang — early, in fact, on my scheduled last day of work before maternity leave), my optometrist from Dallas oh-so-fortuitously visited London and we had another go at the RGPs, thinking that now perhaps the hormones were settling and my eyes just might be starting to be somewhat more stable. The lenses he tried were awesome. For the first time since surgery, I was able to see 20/20 (a crisp, clean, undistorted 20/20 mind you) through a pair of trial contact lenses. It was fantastic. We also tried macrolenses, which were even more comfortable and gave nearly as good vision. I think I would have opted for the macrolenses except that they started fogging over (and, to be honest, they were a bit daunting due to their very large diameter) and we decided it was best to stick with the RGPs. The RGPs worked wonderfully. Again. For a couple of weeks. Again. One day I got a slight abrasion because a lens had adhered. I began paying closer attention to their movement. They were moving less and less. I found myself worrying about them too much during the day and it was too distracting to be practical for me. We had a few more attempts at troubleshooting long-distance with the kind co-operation of my local ophthalmologist. I considered having another go at piggybacking, having another go at macrolenses. But these things are more difficult when your eye doctor is 4,000 or so miles away, so I just kept postponing it. Additionally, my dry eye condition seemed to be getting worse and worse, and I simply became convinced that I could not succeed with contact lenses until I got my "ocular surfaces" into better condition.
Returning once again to the diagnosis and surgical front: I was no longer pregnant, but I was breast-feeding, so surgery and even any pre-surgical testing were all off limits. I contented myself with investigating cases treated by my ophthalmologist for similar problems, with his co-operation. Like the first RGP experience, it was like a ray of hope. I spoke with patients who seemed to have gone through far worse situations, but who in this surgeon’s hands had had their vision restored and were again able to work and function as well as, or nearly, as before their original surgery. At the same time, other potential sources of corrective surgeries using other technologies were fizzling out one by one. The very best prospect I knew of, in terms of reputation of both the surgeon and the technology, was deeply disappointing. A close friend had tried it out for symptoms very similar to, though perhaps less severe than, mine, and came away with vision in the treated eye worse than it had been before. (Needless to say, she did not return to do the second eye.)
In a way, it had been a relief to be pregnant, and even breast-feeding, because in those circumstances I had no choices. I COULDN’T have surgery, so I did not have to face up to the decision-making process or even feel I had to keep up with the latest and greatest surgical developments. But when you’re working full time and have a long commute, breast-feeding cannot be made to last forever. We stopped in February.
In April 2003, I went back to Dallas for another round, Chaidie in tow. She learned to crawl at the Hyatt by DFW airport. We met some other laser surgery casualties there, and my optometrist’s family, and generally had a good time. Oh, yes, and we focused on designing some Macrolenses for me. Repeat of history again. Great lenses, again. Next week, problems, again.
In May 2003, I decided to call it a day. While I firmly believe in exhausting the RGP potential, and always try to encourage other patients to persist, for a few of us there comes a point when you just know it is not going to work and that denial will not help. I finally decided that the RGP horse was, as far as I was concerned, in rigor mortis and further beating was superfluous.
And that brings us to today....
It’s not easy. My eyes hurt all day and when I wake in the night. I can’t see things I need to be able to see. I can’t drive — day or night. Everything I do is harder than it used to be, and there are things I can’t do anymore at all and other things that are simply so much more difficult they just aren’t worth it. In all activities, there seems to be a slight underlying feeling of strain.
At work, I have a humidifier in the office, a bottle of drops by the computer and a sticky note reminding me to blink more often. I have my monitor display settings all set to such large print and low resolution that people in the corridor 10+ feet away can probably read my email. But even with all that I can’t read the computer screen without putting my face practically on top of it, so a lot of the time I just write without reading what I’m writing and worry about cleaning it up later. I have a bright halogen light on my desk that helps somewhat when I’m poring over documents. I have an eye patch stowed in a drawer for days with a particularly bad imbalance between the eyes. When I walk down the corridor, I smile blandly and gaze in any direction except directly in front of me, because I often can’t recognise people walking towards me and therefore don’t know how to respond.
At home, I’ve had to pretty much give up reading for pleasure. My eyes are just too sore and what little tolerance they have, I have to preserve for my job. I do hot compresses morning and night to stimulate glandular secretions to help my tears. I have bottles of eyedrops all over the house. I keep all the lights on everywhere. My daughter can see and respond to the expression on my face from across the room, but I can’t see hers.
Out and about, things just aren’t the same. I feel assailed by print and I am constantly averting my eyes from distorted, disorienting signs. Supermarkets are a struggle, between the fluorescent lights and not being able to read price indicators. For entertainment, I don’t go out much anymore at all. I can’t drive. Reading menus in dimly lit restaurants is a problem. Theatres and cinema are no longer enjoyable.
BUT — BUT - BUT! None of this means that my life has been ruined or that I think about my eyes all the time. When you have a problem like this you simply adapt. You do different things, or you find different ways to do the same things. Only at times, in certain situations, I get a sort of twinge, a little siren going off in my head saying "D***, I really wish I could see properly." Otherwise, I just cope. I have many sources of happiness in life. My eye situation is a serious problem and at the best of times a significant distraction, but it has not by any means taken over my life. Nor will it ever, God willing!
By the way, if you’re wondering how somebody with such compromised vision could put together a website like this in their spare time, the secret is a really, really good web designer who doubles as copy editor, critic and basically everything else one could wish for when taking on this kind of production. I just close my eyes and write, and he magically transforms it into a website.
What if I could do it all over again — what would I do differently?
I did not go looking for LASIK. LASIK came looking for me. I was persuaded into it. I am now sadder and wiser, And it is this acquired wisdom that I want to share with you in reflecting on my experience. If there is anything I fear, it is that in doing so I might be thought cynical. I don’t think that I am cynical. I have not "lost my faith in mankind" or in the medical world or anything like that. I have just learned many important practical facts. So, here goes:
I think that the fundamental problem with my experience is that I dealt with the entire situation from the perspective of a patient rather than that of a consumer.
It truly never occurred to me that commercial interests could directly or indirectly affect the doctor-patient relationship I had enjoyed with my optometrist all those years or the quality of medical advice she gave me or the quality of advice the surgeon she referred me to gave me. If I had ever thought about it, I certainly would have realised that there are very large business interests at stake in laser vision correction. But there was nothing to actively instigate me to consider that that might have implications for me, as I considered and prepared for surgery, any more than I might have been likely to consider the possibility commercial interests might affect a surgery my GP advised for a medical condition.
Now having said that, do not imagine that I blame my eye situation on greedy, unscrupulous doctors! I don’t really believe in that. Undoubtedly there are greedy, unscrupulous eye doctors cycling people through "15-minute miracle" eye surgeries as rapidly as possible simply to maximise their profits just as there are greedy, unscrupulous people in any profession or industry, and I have certainly heard of many instances of plainly indefensible practises at laser vision clinics. But that was not my experience. I think it’s far more murky than that. I don’t see it as being exclusively a problem at a personal level (e.g. the greedy, sloppy doc) — I think that the problem is much more to do with the bigger picture. I think that LASIK has engendered a mentality of commoditisation of what is really a very delicate and somewhat unpredictable surgery — a mentality which, when bolstered by the profit potential, is greatly interfering with excellence in the practice of ophthalmology, even in doctors who elsewhere in their practices seem to have reasonably high standards.
If I could do it all over again, I would simply set aside all thoughts of a doctor-patient relationship and consider myself a consumer looking for the best possible product, the same way I might do with trying to find a financial advisor or a lawyer, except that obviously with so much at stake I would be that much more motivated to find the best in order to safeguard my eyes. In services industries, the best is not necessarily the most expensive and is often difficult to identify. Finding the best requires a great deal of savvy, diligence, good contacts, and experience. — As a practical matter, I seriously doubt I would have been motivated enough to go to such lengths, in which case I would not have had surgery. If I had gone to the necessary lengths to discover the facts, I would have discovered that my own long-time personal belief that very short-sighted people are high risk for eye surgery were perfectly justified. Considering that I only agreed to have LASIK after they deliberately and aggressively persuaded me I was wrong about the risks, I certainly would not have had LASIK in this case.
For those of you who are fortunate enough to be in a position to educate yourselves adequately before surgery, more power to you. You deserve to find out exactly what is best for YOUR eyes, not simply the average eye with your particular refractive error, or the average eye that theoretically is a proper candidate for LASIK.
Learn from my experience. Find out what an "excellent candidate" really is. And let us help.
Updates
Some brief but very significant updates...
In October 2003, I had a wavefront-guided laser retreatment on my left (non-dominant) eye to see if my vision could be improved. This unfortunately resulted in a worsening of vision in that eye and I decided after that not to pursue any further surgical options.
In early 2004, I decided to try RGPs once more, with DrG in Dallas again. (For those of you who are interested, DrG posts on D'Eyealogues, and there are many success stories there from many of the challenging post LASIK cases he has worked with.) This time, I was successfully fitted with Macrolenses, which gave me functional vision during the day and comfort sufficient that I could wear them pretty much all day, every day. I continued to wear the Macrolenses for about two and a half years.
In mid 2006, I had an opportunity to try scleral lenses at the Boston Foundation for Sight. I had considered myself a successful Macrolens wearer, but I did have concerns about the long-term because my eyes were getting increasingly dry, hence my interest in sclerals, which are designed to keep the entire cornea bathed in fluid. I was successfully fitted at BFS and at the time of this writing (November 2006) am wearing sclerals full time. They give me the best vision I have had in 5 years and excellent comfort; I have also seen great improvement in my eye comfort on removing the lenses.
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