Announcement

**Margaret** · 24-Mar-2011, 14:19

I agree SAAG

I know what you mean. I just talked to a dry eye specialist's assistant and she used to work in one of the largest Lasik centers in the state and she said they go through people like clockwork each week and although many people come back complaining of dryness they all resolve fairly quickly. Myself and one other woman are the only two outliers. The other woman is doing "much better" after two years and I'm still currently in treatment at 10 months out. So, If that's the stat for just one Lasik center and you spread that out to all those in the states and I suddenly start feeling rare. And then those of us that are already rare, a percentage of us even get better, so then there's the rare of the rare...My husband, two other family relatives, around 7 friends that I all know very well had Lasik and have never looked back. Loved the results. I don't feel so guilty anymore as to why I did it, it seems to work very well for many, many people. So, I'm with you, I wouldn't know what to do either. Part of me says our story is worth telling though so that the pharm and research companies know that we're out there looking for them to figure this out. The more of us talking the more they will realize (along with sales of drugs like Restasis) there is a demand that is only growing the more Lasik and other surgeries exist.

Let us know what you decide!

Margaret

**Rebecca Petris** · 24-Mar-2011, 14:31

Originally posted by SAAG View Post

But on the other hand, if what's happened to me only happens to 1 in 10 000, and everyone else with post-lasik dry eye is leading a perfectly normal life, dry eye totally 100% manageable, LASIK was still totally worth the trouble for them etc., then maybe there's no point in letting anyone know what's happened to me... the big question is, am I (and others like me here on the forum) just a total freak incredibly rare outcome?

I know I'm not your target audience for this post but I can't help myself

Totally understand where you're coming from.

I want to comment on the 1 in 10,000 idea. I do not know, couldn't even guess, how many people this severe form of lasik dry eye happens to. But I know it's absolutely not THAT rare. Let me illustrate:

I'm going to take a totally random wild guess and say I have met, spoken or emailed with 1,000 people over the past 10 years who have had severe dry eye from LASIK that has seriously messed with their lives (whether for months or years). Considering how many people I hear from each week, I really don't think it is possible for that to be an overestimate. Now, if this happened to 1 in 10,000, that would mean I have personally made contact with pretty close to every person in this country who has had severe LASIK dry eye (1,000 of 10 million). Not a chance

- if I've even made contact with 0.1% of them I'd be really surprised.

Now a little more broadly on this thing of the "few" complications patients vs the "many" that are happy. I don't think of it that way at all.

LASIK results are a spectrum.

a spectrum of refractive results (you'd be surprised how many people are *not* 20/20)
a spectrum of ocular surface disease results (from the miserables to the ones who "just" use eyedrops several times a day or ointment at night to those who truly notice no difference whatsoever in their eye surface health for several years)
a spectrum of vision quality results (from pristine night vision to moderate starbursts to the full constellation of HOA effects)
AND IN ADDITION, a spectrum of "happiness" results - which may or may not bear ANY relation to their position on the three preceding spectrums.

I once ran a survey of lasik patients in the UK with very detailed questions about their vision quality and about their ocular surface comfort. It also asked about their satisfaction. The most astonishing feature of the results was how many of them were satisfied in spite of significant symptoms - in some cases symptoms you and I would have great difficulty tolerating. What constitutes a successful surgery for someone is clearly extremely subjective. I recently spoke with someone who has some nasty after effects but tells me it's all worth it because it's such a huge relief to her not to have to wear glasses. In fact. one of the reasons I often found myself in conflict with the anti lasik movements over the years was that I concede more than others want me to about how happy a lot of lasik patients are. But I still hate the industry's guts. Because it's not just that people get hurt - you could say that about anything. It's that these people had absolutely no adequate way to gauge the risk they were voluntarily undertaking accurately, AND when they had trouble, they were badly treated and abandoned. For example, someone I talked to just recently who has severe LASIK dry eye. She had dry eye before surgery, and she "knew" based on the form that there was risk of more dry eye. "But," she said to me, "It's just that I never connected dry eye with PAIN. I had no idea."

**needhelp640** · 24-Mar-2011, 16:16

my personal opinion is that you should go on camera and let the world know about this. Because even if we all are freak rare results(which i highly doubt), I think the world deserves to know about us and especially the medical companies so that maybe they can do something to help us all out. We really need to show how many we are.

good luck!!

**LilyFair** · 24-Mar-2011, 18:19

Great posts on this thread, thank you, I don't feel so alone with my thoughts and experience. I'm post-lasik 10 months in and have very bad dry-eye since.

To answer the original question I don't know if I would go on camera or not, it's easy to tell somebody they should and yes we all SHOULD, but in my life since LASIK I've not experienced a whole lot of sympathy or understanding about this dry eye I've even been jeered and 'told you so'd' for having the procedure, so to go more public could be a nuisance. Nobody seems to want to look at this problem and I was one of them before I had the surgery, it's somewhat embarrassing. I also did not associate dry eye with pain or anything other than using eye drops now and then, I had no idea. So maybe the key here is to bring more awareness to that somehow. If a common side effect was '' or 'crippling back pain 24/7, or 'constant toothache', people would think a little differently!

**LilyFair** · 24-Mar-2011, 18:24

Our looks obsessive society may be more interested in this side effect from the dry eye!

http://www.dryeyezone.com/talk/showt...ted-appearance

(Just trying to think of the best way to get the message across)

**Guest** · 24-Mar-2011, 20:10

Thanks to everyone who has taken the time to reply! And Rebecca, you are TOTALLY part of my targeted audience! I don't know if you've done any interviews, but I've seen the videos of you speaking before the FDA, so I know you can relate to deciding whether or not to say something publicly about this!

I'm pretty sure I'm going to go ahead with this... will be talking with the producer again tomorrow regarding a few questions I have... if anyone reading this has had a really bad post-lasik outcome and would be interested in speaking with him also, please PM me and I will forward his contact info to you.

**Rebecca Petris** · 24-Mar-2011, 20:56

I would never want to urge anyone to 'go public' like this because it's a hard decision - there are many factors involved - but I feel so appreciative when people are in a place where they are comfortable doing so. The voices are badly needed. And you are so articulate and would be such a 'credible witness' in so many ways.

Many, many years ago I did a bunch of press interviews back in the UK and while I would always get very nervous beforehand and of course obsess afterwards about what I said or didn't, I sure never regretted it or begrudged any of the embarrassment. You never know whose life you may touch for the better, both in terms of bringing people out of the woodwork who need help with complications (be prepared for a lot of that! - when you speak up, it makes it 'safer' for others to do so) and in terms of making people think and investigate much more carefully before taking a plunge. Some people, certainly, are never influenced by hearing what they think of as 'horror stories' but many others are very rational and will take what you have to say fully on board.

**Margaret** · 24-Mar-2011, 21:11

Well said, Rebecca. I agree whole-heartedly. It takes courage to speak out about a life experience such as this when people can easily brush you off or discount what you have to say. However, you know the truth and we all stand behind you since we know the truth as well. I also think more doctors are figuring it out as we go along down this path as well. You aren't alone! However, I agree, it's a difficult and personal decision and I understand how hard it would be to decide.

Margaret

**PRK** · 25-Mar-2011, 12:26

Even if it was a 1 in 1000 thing, I would have definitely looked into dry eye further if I had known it could really be this bad. The term �dry eye� doesn�t express the burning you feel 13 hours a day. It makes it sound like �Oh my eyes won�t be so watery, and may produce a few less tears.� Refractive surgeons should not be able to use the term dry eye it should be NERVE PAIN instead.

All I can think about sometimes is I wish I would have seen something on dry eye that would have made me think twice on having the operation. If you look into PRK operations dry eye just isn�t mentioned that much since I guess it isn�t as exciting as the other more horrific complications like blindness, but dry eye is like being half blind; I can only keep my eyes open for half a day anyways. It gets overlooked and until you have it you don�t realize how bad it can be. If I had some idea before the surgery maybe I would have thought �Hmmmm dealing with burning eyes every day for the rest of my life that doesn�t sound very fun, putting in drops every 100 times a day and spending 30 dollars a week on drops, having to wear goggles everywhere I go, not being able to have a normal job or any social life and wait a minute I can see fine with glasses or contacts anyways!?�

I wish I had been more aware of just how many different ways refractive surgery can destroy your life and even if it is 1 in 1000 they need to look further into what caused the one case to occur but most just don�t care. Apparently common sense isn�t a prerequisite for being a LASIK doctor.

Now there�s still a lot that I haven�t tried yet but this is a ton of work for nothing. If I could have had just a glimpse of this life beforehand maybe I could have thought with the logical part of my brain and done things differently.

My biggest problem is that they need to do more to make sure we grow back the nerves in our cornea and make sure that they are healthy functioning nerves. In my opinion before they are allowed to perform these surgeries they need to be able to have some control on the nerve healing process. They need to be able to monitor it and help it as needed. Antibiotics and steroids with BAK in them just don�t cut it.

**Guest** · 25-Mar-2011, 14:16

Hang in there PRK... don't know how long it's been since your surgery, and ending up like this totally sucks... but it will get better...

My interview is tentatively scheduled for mid-April... tick tock tick tock... now I just have to wait, and try not to get too nervous about it in the mean time

I'm thinking this would be so much easier if I LIKED being the center of attention lol... I'm SO out of my comfort zone with this whole thing... but hopefully it will do some good...

**aga** · 13-Apr-2011, 10:45

Lasik

These posts really scare me. I suffered from dry eyes for about 18months (probably medications), now my eyes are okey again. I can wear my contacts all day long but I'm dreaming about having LASIK. As a child I had to wear glasses and it was horrible to me. My life changed completely when I got my first pair of contacts at the age of 15. I was so self confident!!!Then I got a job I was dreaming about.
Now I'm thinking of having LASIK because I want to wake up in the middle of the night and see!!!I want to go to a party in a smoky club and see!!!!I just want to feel I am "normal". And of course people I know personally, who are after LASIK , even do not know what dry eyes are...
Maybe with LASIK and dry eyes is like with the car accidents...every day we drive cars, every day people die in accidents on the roads but we still use them...
I feel it can be the hardest decision in my life.

**Rebecca Petris** · 13-Apr-2011, 11:53

Originally posted by aga View Post

Maybe with LASIK and dry eyes is like with the car accidents...every day we drive cars, every day people die in accidents on the roads but we still use them...
I feel it can be the hardest decision in my life.

I understand how hard the decision can be. It's easy for us on the other side of it to say, "No!" but when you're focused on what you might gain, it's hard.

I want to say that the frequency of injury or death from a car accident is FAR smaller than the chance of dry eye after LASIK. Everyone gets dry eye after lasik; for many people, it's mild and only lasts a few weeks; for others, it lasts several months; and for some it lasts years. Of those, no one really knows how many have severe pain.

I just looked on the internet for car accident statistics in the US. According to this site, there are only a little over 1 (yes, one) death per 100 million vehicle miles traveled in 2009. Or if you look at it as a percentage of the population, 0.01%. Those odds certainly won't stop me from getting in the driver's seat. And that's exactly what LASIK marketers want you to think about the risks of eye surgery.

In stark contrast, medical studies of LASIK show anywhere from 5% to nearly 40% rates of dry eye at 6 months after surgery. 20% is probably more realistic as many studies have confirmed it. Again, some of those are people in the kind of agony you see on this board, others are more manageable - but however you look at it, it's a huge percentage. Those odds are not exactly consumer-friendly.

**Guest** · 13-Apr-2011, 15:26

Originally posted by aga View Post

As a child I had to wear glasses and it was horrible to me. My life changed completely when I got my first pair of contacts at the age of 15. I was so self confident!!!

Same thing here... felt horrible in glasses... everyone else had stylish wire frames - I was stuck with the bargain rack's 70's-style thick plastic semi-transparent frames... ugh Got contacts at 14...

Originally posted by aga View Post

Now I'm thinking of having LASIK because I want to wake up in the middle of the night and see!!!I want to go to a party in a smoky club and see!!!!I just want to feel I am "normal". And of course people I know personally, who are after LASIK , even do not know what dry eyes are...

Can relate to all of this - I also really really wanted to be able to go swimming and SEE... to be able to dive underwater and SEE without everything being a blur... (kind of ironic, isn't it... now I CAN see, but I can't do any of those things... eyes are stuck shut overnight, so cannot open my eyes at all until I get some drops to leak in there... takes longer than it used to to just grab my eyeglasses... don't dare get water in my eyes because it hurts too much now... ugh)

Also, knew personally close to 10 people who had Lasik and they all loved it. Knew of 1 person who had ended up with a corneal transplant, but figured he must have been that freak case that's 1 in a 10000... doc assured me that other than that rare adverse effect (which he'd never had happen in thousands of procedures), I had nothing to worry about since I had been properly screened...

**aga** · 14-Apr-2011, 01:29

glasses

Glasses are okey when you like...glasses

I know people who love them.
I will never change my attitude to them:-) As a child I had to resign from (in fact I was kicked out)a ballet school because of them and I couldn't be a professional dancer I was dreaming about. When I was 17 (and had one-year contact lens) I started working as a model- only because I didn't have to wear glasses and my life changed completely for better!!!! I do not mind wearing glasses while watching tv at night or preparing fashion projects on computer but for me being -6 is being a disable person:-(
Anyway- thanks for replies and for this helpful, clever and supporting forum:-)

Announcement

Strongly considering doing an on-camera interview... your thoughts?

Strongly considering doing an on-camera interview... your thoughts?

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