LASIK dry eye: Coping with crisis and what moving on looks like
My story started in 2001. I've told it many times over the years, and it probably sounds pretty different every time. Time changes everything. Eyes change, circumstances change, perspectives on experiences change. So my story today is just a ramble through time and memory fragments of life with eye issues over the years.
LASIK: The procedure that started it all
I had LASIK eye surgery on July 20th, 2001, in the San Francisco Bay area, and ever since, I've had damaged vision, dry eye and nerve pain.
I wasn’t necessarily your most conventional LASIK customer.
I didn't get LASIK because I wanted to ditch my glasses, or even my contacts per se. I didn't see so well with glasses, and I was having issues with my contacts. I had a high prescription that was problematic for contacts, and I went into LASIK not believing they could correct my prescription accurately enough to be free of corrective lenses of some kind. What I thought was that they would get my prescription down so low that I could wear glasses more successfully. Instead, my vision can no longer be corrected with glasses or ordinary contacts at all.
Like so many others I know who had problems after LASIK, I did not cut corners and did not spare my budget. I went to one of the best. He was a corneal specialist, not a general ophthalmologist like so many LASIK surgeons. He was one of the doctors that others send their complications patients to. Most people assume that if you have complications, it’s because you had a lousy surgeon. That is simply not true - though industry-leading surgeons always play on this assumption when defending the safety of LASIK to the press (ref. recent New York Times piece).
Before scheduling surgery, I had an appointment where I wrote down all my questions and concerns and talked everything through with him. His answers all made sense, and they made it clear he had wide experience with both prevention and treatment of complications. Did I do research online? Not much, but then, it was 2001, before the days of six million hits on every keyword, and, honestly, I relied a lot on my confidence in my optometrist, who was young and smart and savvy and knew my eyes very well.
My optometrist had quietly been encouraging the LASIK idea for a couple of years, and I eventually buckled in a vulnerable moment. Not that it was exactly spontaneous. The thing is, I was a very high myope with a fair amount of astigmatism. I never believed people like me could successfully get vision correction surgery. But apparently, some part of me had been listening and wishing my optometrist was right when she mentioned people with higher prescriptions that had been successfully operated on. I had a great relationship with my optometrist and liked and respected and trusted her. She knew my eyes, and she knew I was cautious and had reservations. When she was really sure this was right for me, that's when I relaxed my guard. And I still remember the vulnerable moment. I had landed in Newark airport after midnight and had to drive to a hotel an hour away, and my vision was just shot. I knew I wouldn't see well enough with glasses, so I left my contacts in. At the exit I needed to take, I turned a little later than intended because I couldn't see the exit sign clearly till the last minute, and I ended up running over a dividing line. Only, it turned out to be a raised curb, not just a painted line. Thankfully, the rental car and I were both fine, but it shook me up and made me realize I needed to do something about my vision.
So I had LASIK.
It changed my life, but I didn't know it at the time. I mean, I knew I had problems, but I didn't know for quite some time that they might turn out to be permanent.
The vision problems showed up within 48 hours and they pretty much are today exactly as they were then. My best corrected acuity with glasses dropped from 20/20 to 20/70 and I got a lot of weird stuff - fluctuating vision, multiple images (ghosts) in all directions, overwhelming glare, halos and starbursts in low light, and my contrast sensitivity dropped off the bottom of the chart. People with LASIK complications or diseases like keratoconus will probably relate when I describe it as vaseline vision.
The dry eye and nerve pain didn't show up until about 3 months later. I learned later on that this was common, something to do with the time nerve regeneration takes after they cut the flap. Some people have dry eye pain immediately after surgery, others just don't have much sensation at all (which is why it's so important to be using drops regularly anyway) for a few weeks or months.
For me, the vision issues dominated my life then and for a long time to come, from how my vision interfered with work, to what it meant not to be able to drive. I always find myself starting to say that the vision problems outshouted the eye pain, but when I really reach back into my memory banks, I find that's not really true. I remember my eyes hurting all the time. All the time. They burned. They ached. They watered. Airports and airplanes were miserable. I remember at work in London (where we moved about 6 months after my procedure) I got a patch and I would swap it back and forth, covering first one eye and then the other, trying to get some relief. I got some ribbing from my colleagues, but I couldn't have cared less. If anybody in those days had told me goggles would help, I wouldn't have hesitated to wear goggles all day long for the sake of relief.
Before the move to London, there was 9/11. It was less than two months after my surgery. I flew into New York for a business dinner the evening of 9/10. (If we hadn’t stayed out so late that night, I would have been on flight 93.) I was stuck in town till the following Sunday. Smoke was hard on the eyes, but the worst was that I couldn’t even get in a car and drive away because I couldn’t see well enough. I had actually booked a rental car before I remembered.
I don't really want to comment on how my LASIK surgeon did, and did not, respond to the issues I faced, either during the six months when I was still in California or the next six months while I was trying to get my medical records for my new doctor in London. Suffice to say that those who have shared my experience can conjecture how much help I didn't get. I was very happy to move on to another doctor.
I spent almost three years with uncorrectable vaseline vision and constant eye pain. In those years, I was online constantly on forums for people with refractive surgery complications. The people online were my new community, my new family. Once I found my feet with my own situation in terms of short term coping, I poured myself into trying to find ways to help others. Life is so much more bearable when you have a sense of purpose and feel like you're useful in some way to someone somewhere. Looking back on it now, I know that those online sessions were like an addiction for me, they are what I turned too every time the pain and visual mess triggered my anxiety. If you had told me back then that I had anxiety, let alone depression, I wouldn't have known what you were talking about. I do now. Anyone with very high functioning depression who's been through severe dry eye probably knows what I mean.
I have no doubt that all that screen time - on top of my work screen time - was really bad for my eyes. It's one of the really unfair ironies of certain eye diseases - you absolutely need the internet both for information and for support, but computer use also makes everything worse.
I think my driest stretch was in 2002. It seems I got pregnant almost as soon as we landed in England that year. I was slathering lacrilube on my eyes and covering them with plastic wrap every night, and getting up in the night to add more. Third trimester was the worst. But at least I knew it would get better. And back in those days, there was a doctor helping us. His drops were the first thing to get my sleeping through the night. None of us who were there will ever forget his selflessness in all the time he spent online in the forums.
Ashu's story: understanding depression and perspective
2003 brought a dark chapter when a fellow LASIK patient in Michigan, Ashu, took his life after a failed surgical treatment. This was the first of many actual and attempted suicides to touch my life over the years after my own LASIK.
Ashu’s vision and dry eye and pain issues were so similar to mine. Most people I knew had one or the other, but not all three in such a degree. I emailed with him for a long time. We talked about so many things from the state of the industry to the nature of so-called “informed consent” in elective eye surgeries to the viability of treatment options to how to cope with the cards you’re dealt to how to think about the practice and defense of LASIK.
I had the joy of meeting Ashu in London when he visited my own doctor at one point, and the horror of having to communicate to the same doctor what happened after the surgery was unsuccessful. Ashu was a psychiatry resident. Tragically, as intelligent, perceptive, articulate, and insightful a young man as he was, he was not able to grasp that his thought life after LASIK (which was performed by another young man at his own university) was profoundly impacted by severe depression. Like so many in his situation, he extrapolated today’s suffering into the indefinite future, and could not bear the prospect. He didn’t understand that things could and would get better. From my perspective, he burned through the treatment options too quickly when time was actually the most potent factor in bringing more peace in situations like ours. I cared so deeply for Ashu, and when I learned of his passing, I went and spoke at a memorial his department held, to see if I could help them make sense of things. I had the great pleasure and great pain of meeting his bereaved parents. He was an only child.
From Sclerals to PROSE
Circling back to my own eyes… I think the pain got worse later on. But at least the vision was eventually addressable. Thanks to the famous DrG in Dallas, I got lenses in 2004 that gave me near-normal vision. It was such a breakthrough. But by that time, I had already reached the breaking point with my job. I just couldn't do it. I loved my job. But it was long hours and a lot of travel, I had a young baby, and my husband's health was going steeply downhill. After two and a half years pretending everything was okay, while struggling through pain and struggling to see with a variety of low vision aids, I finally faced the reality and started phasing out of my job. Not long after we moved back to the States (Florida, for a couple of years) I got my DrG lenses, and it really was thanks to DrG that I was able to start The Dry Eye Company (dryeyezone.com, dryeyeshop.com). The lenses served me very well for about two years. I had been desperate for normal vision, and they provided that. But ultimately, I I would need much larger lenses because my corneas just could not tolerate any touch anywhere.
My own capacity as an advocate
Sometime during that stretch, I had a brush with a near-suicide that was a new turning point. It was someone I was speaking and talking with regularly, on on the other side of the continent. (We were back in the states then, but on the east coast.) A dear mutual friend had seem some online communications and told me bluntly that he needed to be hospitalized, which was a badly needed wake-up call for me. My understanding of mental health issues was very limited then. I was so grateful for the advice, because shortly afterwards, I found myself in a horrifying situation where I had him on one phone line, and his 7-months-pregnant wife on the other. He was frankly homicidal and suicidal and I was switching back and forth between the two lines, trying to persuade him to check himself into a psych ward and trying to bring her up to speed in no time flat about how serious things were with him and why. I am so thankful to be able to say that they found each other, he did what he needed to do and his wife supported him and they both came through it successfully. But for me, it painfully underscored my lack of understanding and training in mental health issues, something that I would work hard to remedy in later years. On the one hand, I had become a magnet for people in crisis because I understood why they felt as they did. On the other hand, I had no qualifications to be their 1800 suicide line. It was hard.
my PROSE lenses and dry eye treatments
Circling back to my eyes... In 2006, through the kindness of a great friend, I had the opportunity to get PROSE from BostonSight. It was then for the first time that I had a solution to vision, dry eye and pain at the same time. I also found a wonderful family of people at BostonSight. This was back in the old days with founder Perry Rosenthal, and Lynette Johns, and Mark Cohen, and Debbie Jacobs and that whole amazing team. I met so many people there with advanced corneal diseases of all sorts.
But wait, I haven't talked much about dry eye treatments, so I probably ought to cover that. I guess it was never a huge focus for me. I did all the normal conventional things (the few that there were) back in the old days, except Restasis which I never bothered with. I'm kind of a less-is-more sort of person in general. I am so thankful that scleral lenses keep me pretty comfortable most of the time that they are in, as long as I'm not over-wearing them. - I've been blessed with many great doctors and opportunities for treatments that many people never get. I had Lipiflow last year, perhaps more out of curiosity than anything else, but these days, other than sclerals and some basic lid care and some overnight care and wearing foam-lined sunglasses a lot, I don't really do much for my eyes. If I flare up, I know what I need to do to get it back under control.
One of my few really bad experiences of a dry eye treatment was back in, hm, I think it was 2014. It seems that a SmartPlug that was inserted way back in England in 2002 or 3 had come back to haunt me, but it took several months and several doctors and a lot of pondering before deciding that's what it was. My left eye hurt and had a lot of inflammation for over a year. I could not wear a scleral lens all that time, which really made everything very hard. Plugs can often flush through into your nose and out and cause no problem, but it's also not uncommon for plugs to float around in the lacrimal sac for years and then after a long time, raise their ugly heads in the most out-of-the-way places. And the worst is, you simply do not and cannot know where they are or what they're doing, without cutting it all open. I had a canaliculotomy... no plug. Rats. I almost had a DCR, but was saved by the bell. I accidentally let my insurance lapse (I'm not a big earner, and probably just missed a payment or two) which meant I had to cancel a scheduled surgery and before I managed to get everything straightened out, I started noticing that my eye was better. It has never recurred since then, thankfully. But it was a really hard year, during which a lot of the time I had to keep my left eye taped down during most of my working hours. I'm so glad that's past.
FDA LASIK Hearing
Flash back to 2008. LASIK patient advocates finally achieved enough sway with the FDA to persuade them to hold a hearing to allow the public to voice their concerns about LASIK. I had such mixed feelings about it. I ended up at the last minute going and speaking. Here’s the video clip [see below] if you’re interested. It was a painful and frustrating experience. On the one hand, many of us patients spoke. On the other hand, the industry - in the shape of prominent surgeon spokespeople, and even the DOD - showed up en masse. Did they show up to express their concern and commitment to help people with LASIK problems? No. They showed up for one purpose only: to defend their industry. The meeting was astonishingly polarized.
Advocacy and the Dry Eye Company
Flash further back.
The turning point in my post LASIK life was 2004, when I decided to shift my thinking from LASIK problems to the dry eye world, to see if there was any good I could do for people with dry eye. Why?
When I hit bottom, hit my life crisis point, it was about whether I wanted to spend my time tearing down something destructive, something hurtful, or building up something constructive, something helpful.
I spent about three years doing the former. I did PR work in England to expose LASIK industry problems, even helped form a parliamentary committee to draft legislation to curb abuses. I worked behind the scenes, unsuccessfully in the end, to try to orchestrate an expose of an excimer laser manufacturer that was knowingly marketing a series of defective lasers that were causing permanent vision problems like those I experienced to hundreds of people. We had documentary evidence leaked by an insider, astute journalists, dozens of surgeons in the know - and yet, in the end, the project foundered and industry won.
The wrongness of it all was absolutely tearing me apart. Meantime, I had a beloved husband in failing health and a very young daughter I absolutely delighted in, and felt like I was cheating them of my time and attention.
That’s really when the Dry Eye Company was born. In that intersection of experiences.
Having a fresh new direction where I could try to do something useful for people with dry eye - since it seemed I could never do enough for people with dry eye or any other problems specifically from LASIK - was life-giving for me. It helped me move on.
The FDA hearing 2008 was a painful interruption, but thankfully only an interruption. One of many events that would act, somehow, like a backfiring car to a combat veteran. Only my fellow LASIK patients can thoroughly understand the lack of hyperbole in that description.
thoughts from today's perspective
Fast-forward once more to the present...
My daughter's grown up, and now working for The Dry Eye Company part time while finishing high school! My husband's doing well but is in assisted living about half the time. I'm doing great. My vision bothers me, and my eyes hurt a lot. There are days when I catch myself being really irritable and I realize it's because my eyes are acting up and that I need to deal with it.
But most of the time, regardless of the pain 'grade' at any point in time, it's sort of like background noise. It may be louder or quieter at times, but it’s still mostly in the background, not the foreground. It's not dominating my days. It's a qualitative mental difference that I think you can trace in a lot of dry eye stories. You get to a point where things are far from normal but they are your new normal. Where they are reasonably predictable. Where, most importantly of all, you feel that you are in control: That when it acts up, you may or may not always know why, but you almost always know what to do to get it back under control. You have your normal eye regimen, and you have your reserve stock. When things get rough, you bring out the reserves. Sometimes your eyes feel better and your guard is down and you slack off on your normal regimen, and things go south, but all you have to do is pick it up again. The security factor of knowing what to do is huge.
While my eyes have been under good control for a long time, I'll never forget those early years and the emotional toll they took.
If I could share any words of wisdom from my experiences during the hardest times with my eyes, the things that helped me the most were (1) being intentional about addressing only very short time increments, and (2) focusing on practical tools to get through the day. I deliberately refused to think about or address long term implications because I knew it would be too much. When you're in a hard place, hurting and with a thousand unknowns to navigate, extrapolating today's experience into the indefinite future is a really harmful trap people fall into. It'll paralyze you or it'll switch you into overdrive and mess with your ability to make good decisions.
So instead, I told myself, I'm going to shrink time down to six months, and I'm going to get myself everything I need to cope for six months, and re-assess where to go next at the end of that time. All these years later, I stand by that approach.