1 month post lasik - one blurry eye - advice please?

[oneblurryeye]

Hi, I am new to this forum and am seeking input/advice/words of wisdom. This post is probably going to end up quite long. I'll try to break it down.

In Short
I had lasik one month ago, on 10/4/2013, which resulted in flap wrinkle with corneal edema and I still have blurry vision in one eye, even though doc says I'm 20/20. Also still struggling with post-operative dryness, pain and other symptoms, especially sensitivity to cold air. The one thing that has gotten noticeably better is light sensitivity, that's only bothering me at night now for the most part.

How It All Went Down
My flap wrinkle was obvious almost immediately after surgery (I called surgery center within an hour or so after b/c of one eye being cloudy, while the other was clear). At 1 day check, they easily saw the wrinkle and re-floated the flap. Then a horrible month of crazy fluctuating symptoms ensued, including lots of pain and discomfort and barely being able to drive or function normally. My eyes have been sensitive, painful at times (sometimes feeling like an exposed nerve pain, other times shooting pains behind the eyes or overall aching and feeling like someone is squeezing my eyeball). My right eye is also sometimes burning and watering or when exposed to very cold air (grocery stores) it will sometimes "go crazy" (don't know how else to describe it - it's like all of a sudden symptoms all come on at once and I can hardly deal with looking at things) anytime I left the house and tried to do anything where there was a change in light or temperature conditions).

I talked to at least 10 friends or acquaintances who had lasik before I did this and they all thought it was a snap and the best thing they ever did. Those I've talked to again since my procedure are astounded to hear the bad time I've had, so it's obvious this is not "normal." I do know one person who had transient light sensitivity, but her symptoms were very specific (not like this) and she is happy w/results, never had blurriness, just the light thing.

Where Things Stand Now with Symptoms
The main problem is everything is still blurry/smeary/hazy through my right eye. Left eye is crystal clear.

Until just a few days ago I could also hardly get both eyes to look at the same object without a huge amount of effort if it was more than a few feet from my face. It was painful to try to focus them both on one thing. About a week ago, I tried to help out in my daughter's kindergarten class and it was a nightmare. Could hardly read the teacher's instructions on the board. Five year olds were easily out-reading me!

A few days ago, I finally noticed something shifting - a little more ease in focusing both eyes on same object (thought object is still not clear in right eye) and some lessening of the pain, discomfort and sensitivity (thought it still fluctuates each day or even each hour). So that helped me feel a little encouraged and I'm functioning slightly better now.

The right eye is still having burning and irritation, sometimes a little of that nerve-pain feeling, really sensitive to cold and air, and most frustrating, it's still blurry with varying levels of haze and seeing double or ghosting on words at a distance, where the other eye is seeing crystal clear. Light sensitivity is pretty much gone, other than the glare when driving at night.

ABOUT THE DOCS
Two docs have been monitoring me pretty closely and very open and let me come in for lots of extra checks.

I don't necessarily think the surgery center has done anything wrong and they have been accessible (doc gave me personal cell #) and thorough in all their diagnostic tests. I'm also under team care with my ophthalmologist who has been amazing through all this, running extra tests and returning my text messages at 10 pm!

But it's still frustrating and get the sense the doctors just look at the diagnostics and aren't really hearing me when I tell them how debilitating this was for the last month.

At my 1 month appt. a few days ago, the surgeon told me everything I'm experiencing at this point "is normal." What?! All this can't be normal.

He says that edema is gone, doc says cornea looks perfectly clear to him and vision is 20/20 in blurry eye (20/15 in the other eye), no astigmatism in either eye, says cornea is crystal clear from his view and flap looks same in the blurry eye as in the other eye so no signs of trauma/debris/scarring...nothing unusual.

I do have a lot of dryness, but he says it's a normal level for 1 month post lasik.

Nobody seems able to explain all the pain I've been through other than maybe it's dry eye.

They keep telling me right eye is just "healing slower" and "just a little behind" my left eye, and they admit this is most likely because of the wrinkle and flap re-float. They say I'll "be fine" and continue to stabilize and improve, just wait.

Which I can do. I'm very patient. But I'm also just afraid that if I wait then later I'll find out I have a problem that could've been avoided if I'd taken some action sooner.

Does that make sense?

Meds
-I've been taking Lotemax almost the whole time, was 3x daily, just tapered down to 2x daily. Doc told me to go down to 1x daily last week, but things seemed to get worse immediately when I did that. So now I went back up to 2x (and still not sure that's helping - maybe should go back to 3x).
-Just started Restasis a few days ago so that hasn't kicked in yet.
-Because of allergy symptoms (eyes and other) I am on Zyrtec and Flonase. I have tried going up to a week without them and if anything my eye gets worse b/c of the allergies. They don't seem to significantly increase dryness, though I know that is a concern.
-Using tons of artificial tears. Preservative free of course.
-In the beginning I also did Muro 128 when the edema was visible. Now they say it's gone (thought I'm still blurry).

NOW WHAT?!?
It is so frustrating that they just keep saying "yay, you're 20/20" when my vision is still blurry. Just b/c I can figure out half the letters on that line of the chart in the controlled environment and lighting of their office does not mean my vision is fine b/c when I try to read a sign on the wall across a room in everyday situations I can't tell what the heck it says!

Someone just told me about contrast sensitivity, which I wish I'd known to ask about at that last appointment. I'm going to ask at the next appt. for sure (seeing opthalmologist today actually).

Or could I really have astigmatism and they are wrong?

Could this all really just be dry eye? Then why isn't my left eye experiencing any of it when it's supposedly equally dry according to all the tests?

Might there be edema or scarring they cannot see looking in, but that affects me looking out? (Both docs say highly unlikely.)

Also I'm wondering is it too soon to get a 2nd opinion? Everyone I asked at both drs. offices tells me one month is too soon to tell and if that's true, then if blurriness persists when should I do so?

Help!

Thanks for reading and any words of wisdom!!

And sorry for any typos, I tried to blaze through this so not looking at the screen any longer than necessary.

[NotADryEye]

Those I've talked to again since my procedure are astounded to hear the bad time I've had, so it's obvious this is not "normal."
The right eye is still having burning and irritation, sometimes a little of that nerve-pain feeling, really sensitive to cold and air, and most frustrating, it's still blurry with varying levels of haze and seeing double or ghosting on words at a distance, where the other eye is seeing crystal clear. Light sensitivity is pretty much gone, other than the glare when driving at night.

ABOUT THE DOCS
Two docs have been monitoring me pretty closely and very open and let me come in for lots of extra checks.

I don't necessarily think the surgery center has done anything wrong and they have been accessible (doc gave me personal cell #) and thorough in all their diagnostic tests. I'm also under team care with my ophthalmologist who has been amazing through all this, running extra tests and returning my text messages at 10 pm!

But it's still frustrating and get the sense the doctors just look at the diagnostics and aren't really hearing me when I tell them how debilitating this was for the last month.

At my 1 month appt. a few days ago, the surgeon told me everything I'm experiencing at this point "is normal." What?! All this can't be normal.

oneblurryeye,
I am not post Lasik and will let others answer your questions specific to the procedure. But I would like to comment on the question of "normal" vs "not normal" and what appears to the quality of care you have/are receiving.

1. Normal vs Not Normal. I wouldn't think for a minute that what you are going through isn't normal. For you, this is absolutely normal. The way I see it, people like you and many of us with dry eye should be considered absolutely normal, not outliers. Until we become the norm in the minds of the medical community, people like you will continue to be put through all sorts of misery by those who perform procedures like Lasik and those of us with dry eye that is not responsive to conventional treatments will struggle to find help.

2. Yes, it is great that the doctors are responsive, answering your texts at 10pm. I have a doctor like that. I've called his cell on a Sunday night at 11:30pm. I spoke with him via cell one Thanksgiving morning. Doctors like that are angels. But remember, one of the most important rules of medicine is "First do no harm." So I have to wonder, why, when they know that some perfectly normal people can suffer terribly after procedures like Lasik, why do they still perform them. Remember, you are normal. And there are a lot of other perfectly normal people hanging out on DEZ for a reason.

[Rebecca Petris]

Until just a few days ago I could also hardly get both eyes to look at the same object without a huge amount of effort if it was more than a few feet from my face. It was painful to try to focus them both on one thing. About a week ago, I tried to help out in my daughter's kindergarten class and it was a nightmare. Could hardly read the teacher's instructions on the board. Five year olds were easily out-reading me!

When your vision gets something unexpected going wrong from a surgery it can sometimes really mess with your binocular vision (ability to focus two eyes together). This happened to me. It was ONE (far from all) of the causes of my initial vision problems and also resulted in the only broken bones I've ever experienced… because it screwed up my depth perception. That improved later though. It may be that your visual system is starting to adjust (also clearly your acuity's improving so that would help too). Also keep in mind re: pain… while it's more likely all nerve and tear film related, pain from accommodative spasm when you're having focusing issues like that would be a possibility.

I remember that for a long time after my surgery, it was really impossible to tell how much of the discomfort was related to dryness/surface problems and how much was related to vision. (Of course, back then there wasn't even a concept of nerve pain per se from LASIK.)

it's still blurry with varying levels of haze and seeing double or ghosting on words at a distance, where the other eye is seeing crystal clear. Light sensitivity is pretty much gone, other than the glare when driving at night.

If the edema is gone, it *might* be time for some topography and wavefront aberrometry - I wouldn't be in a hurry though knowing how much stuff wobbles around and for how long after surgery when there's been an episode like this. they may *say* you've healed, but it really is a slow remodeling process when anything's happened to the flap - the epithelium just takes its own sweet time to settle down.

But whatever the timing, if vision continues like that you absolutely must get some objective measures of these vision quality issues. Do NOT let anybody fob you off no matter how professional or helpful they may seem. They know damn well that excellent acuity with really bad vision quality totally stinks. It's been written up in the medical journals for oh >10 years now. They could get away with acting surprised before aberrometry but not now. This stuff is measurable.

One other thing I have in mind for you is your epithelium… occasionally when there are flap mishaps *and* if there is any undetected structural weakness (it usually is undetected, that's normal, because it's not obvious) it can make you vulnerable to recurrent erosions later. If there were a pain pattern of sudden sharp pain or watering, overnight especially, you want this checked. Doesn't sound like you have now, and not trying to scare you, but forewarned is forearmed

But it's still frustrating and get the sense the doctors just look at the diagnostics and aren't really hearing me when I tell them how debilitating this was for the last month.

Foreign language to them. Don't even bother… at least not at a lasik clinic. gotta talk their language if you want a response.

At my 1 month appt. a few days ago, the surgeon told me everything I'm experiencing at this point "is normal." What?! All this can't be normal.

He might mean (a) normal all things considered (botched flap). You're not having an infection or a stubborn flap that won't go into place, etc. If he means that, it's true.
Or he might mean (b) normal, as in you look normal clinically for a post LASIK patient. That too would probably be true BUT IT TOTALLY STINKS as a response when you are reporting disabling symptoms.
What is normal, is not what you are experiencing, but that you are being told it's normal (sigh). Sorry.

The chip on my shouldn't isn't showing, is it?

I do have a lot of dryness, but he says it's a normal level for 1 month post lasik.

Not surprising. A lot of people who have severe pain issues after LASIK look relatively normal clinically for their state of healing.

But I'm also just afraid that if I wait then later I'll find out I have a problem that could've been avoided if I'd taken some action sooner.

I totally know how you feel. After 12 years of watching these things play out though… my unprofessional layperson's opinion is, "possible but highly unlikely".

Advice:

Try not to overmedicate. Constant drops may backfire on you. Try to use nonmedical things like goggles and cold packs instead of constant dropping, PF or no.

NOW WHAT?!?
It is so frustrating that they just keep saying "yay, you're 20/20" when my vision is still blurry.

Hah. Three weeks after my surgery they sent me a card in the mail congratulating me that i can now legally drive without my glasses/contacts. I couldn't read a stopsign at the time. I know how you feel.

Someone just told me about contrast sensitivity, which I wish I'd known to ask about at that last appointment. I'm going to ask at the next appt. for sure (seeing opthalmologist today actually).

Contrast sensitivity testing per se is probably not readily available so don't expect this. But wavefront aberrometry would reveal the spherical aberrations that CAUSE poor contrast.

Or could I really have astigmatism and they are wrong?

NO. Absolute least likely thing for them to either make a mistake on or misinform you of.

However, they *might*, push come to shove, say something about irregular astigmatism. Don't let it confuse you, that is a completely different animal. It is something they could find on a good topography. By the way, if you get topos, get them to send a copy to you electronically (or print out a good color copy for you).

Might there be edema or scarring they cannot see looking in, but that affects me looking out? (Both docs say highly unlikely.)

They're right. But scans WILL reveal what's happening, and like I keep saying it's just a question of whether those scans are useful yet (things will continue to change for awhile).

ps Sorry didn't reply before your appointment. Let us know how it went.

[Rebecca Petris]

oneblurryeye,

Forgot to ask. I'm guessing you are left eye dominant, is that correct? If you don't know, use this.

[oneblurryeye]

Rebecca, thank you again, all this detail is incredibly helpful. I saw my ophthalmologist again yesterday (the one who answers texts after hours).

The good updates: He confirmed refraction is perfect and 0 astigmatism (showed me the print out and everything, which they don't bother doing at the surgery center, ugh). In fact, my right eye (the blurry one) is actually measuring with more perfect vision and less clinical dry eye symptoms than the left, which is seeing crystal clear and 20/15! I'm not sure if that makes me feel better or worse about the situation. Also, he says my tear film looks significantly improved in both eyes compared to a week ago, it was scant and now he says it's a little thin but definitely more than scant, pooling on lower lid is much better, and now tears have 7-8 second staying power instead of 5. So in theory whatever part of these symptoms are from the dry eye should begin to get better if this trend continues.

But he cannot explain the blurriness - and the fact that the right eye measures better clinically makes me more scared of what this might mean.

Of course, he's not the surgeon who did the procedure, so this is not his specialty, but on the flipside he's a little more willing to tell me flat-out that this is not "normal" and to brainstorm other ideas about what might be going on.

He too thinks I should wait to try to diagnose anything until at least 3 months. He acknowledged the possibility of diminished contrast sensitivity, but said he hasn't seen it in any of his other custom wavefront patients and would rather wait a few more weeks to test for that since a month is a bit premature. When I go back to him then I will also ask about aberrometry.

The other thing he speculated about is that it could just have to do with nerves healing slower than expected and/or the way nerves are relaying info to my brain - he talked some about things over my head having to do with nerves firing pain signals and the way the brain processes the visual input. He said it could be that this also improves on its own and gave a few examples of other patients with experiences like that, though he acknowledged that usually he can see a reason, in my case he can't.

But then he said it's also possible there is a neurological problem standing in the way of my healing...

And that's when it hit me like a ton of bricks that this might unfortunately make sense with my medical history. Over the years, I've had a series of weird, but seemingly unrelated and years apart, neurological "events" including childhood seizures, migraines and at one point a benign nerve tumor in my neck, which when surgically removed led to a slightly "lazy" eyelid on my right eye, which nobody thought could be a problem with the lasik because the difference is so very, very slight eye doctors don't even notice until they get into the exam, though it does cause the right pupil to be a little smaller.

OMG! What if it's related to all that? Maybe nothing to do with the flap wrinkle at all?

Well, whatever is going on, I have resigned myself to waiting until 3 mos. to see how much this resolves itself and to have "answers" - or to further contemplate the lack of answers. I'm going to try to just cope day-to-day for now.

I am trying to taper off the Lotemax, twice a day for another week or so then once a day, and staying on the Restasis.
I will try to reduce the amount of artificial tears, though that may be difficult. Are they too much of a crutch? Do they impact healing? Docs both said they are just for comfort and don't really do any harm or good for healing.

How do I use the cold packs? Just place them on top of my eyes?

Thank you again, Rebecca! I'm so sorry for all that you've gone through over 12 years, and really so appreciate the support you offer with this website!

[Rebecca Petris]

Unpress that panic button re neurological causes right now please Extremely unlikely. I've come across hundreds, at least, of people over the years with these kinds of visual symptoms you're having. There really is virtually always a relatively simple physiological explanation. It's an explanation they cannot see through the slitlamp (which is why they keep saying you look fine) but it IS clearly visible on topography and aberrometry. If it would make you feel better to have something objective to tie to, you could push to get it done now. It would certainly be a reasonable thing to ask for.

Re: artificial tears: Medical opinion is not all in agreement about this. Some doctors will be totally indifferent to quantity and even encourage you to use them whenever you feel like it. Others would be concerned about the 'leaching' effect of basically washing out any good natural stuff from your natural tears (minimal though they might be) by constantly adding stuff. Also on this board some people (not all of course) experience worsening with more drops either for that reason or because they develop sensitivities to specific ingredients in the drops. Not something to sweat about too much but just be aware that drops for moisture may be necessary but when you're basically using them as painkillers in a sense, it's time to look at alternatives. - Not everyone likes cold packs but they do help a lot of people. Could be a chilled gel pack for example, laid over the lids.

The mantra: It gets better.

[oneblurryeye]

Whew, okay, that's good to hear. I'll put the neuro worries out of my mind for now.

I'm okay with giving it a few weeks before pushing for the topography and aberrometry, since it seems like they can't really DO anything about findings from that testing until 3-6 months anyway. And it also sounds like knowing what aberration there is now doesn't really provide any more certainty about the future.

It gets better. It gets better. It gets better.

I'm practicing the mantra now.

[oneblurryeye]

And yes, I'm left eye dominant. What is the significance of that under these circumstances? Can a person's dominant eye change?

[Rebecca Petris]

And yes, I'm left eye dominant. What is the significance of that under these circumstances?

It explains the extent of the practical impact of the flap mishap on your visual experience as a whole. You can "tune out" bad information from the non-dominant eye pretty easily - not so with the dominant eye. I wish doctors would tell people these things. But, that would mean voluntarily suggesting there's something wrong with your vision quality (whoops, my chip is showing again).

[Rebecca Petris]

Sorry to go on forever but I just picked up on something I didn't notice at first:

He confirmed refraction is perfect and 0 astigmatism (showed me the print out and everything, which they don't bother doing at the surgery center, ugh).

When you say the printout, do you mean a printout of your records (whether handwritten or typed) or do you mean a machine printout, as in, from an autorefractor (machine which automatically measures your vision)?

If it was an autorefractor printout, you need to ask specifically for your manifest refraction results if that wasn't part of the discussion. That's the test where they put lenses in front of you and ask "Better 1, or better 2?" If you want to have the full picture of your visual acuity (which, again, won't touch on your vision quality symptoms BUT there's a slight chance it might reveal something)… saying that only out of long experience of how carefully they like to guide you to the best possible information in these situations... you should know the following for each eye:
1) UCVA (uncorrected visual acuity)
2) BCVA (best-corrected visual acuity)
3) Residual Rx, i.e. what prescription is required at present for you to achieve your BCVA.

[oneblurryeye]

Ooh, good to know about dominant eye. Well, I guess it's a really good thing I'm left eye dominant then. Maybe my brain will just learn to tune out the right eye even more, ha!

Yeah, it's funny how they don't want to explain certain things. I get the feeling that the surgeon holds back info until I know to ask about it. While I definitely understand their fear of being blamed or lawsuits, etc. I really, truly don't blame the doctors for my situation. I signed up for the surgery and knew the risks and don't hold it against them that I got unlucky. Even if the cause of my flap problem was surgeon error, this is a VERY experienced surgeon so it's not lack of experience, but nobody's perfect, docs are human, they make mistakes. And it does me no good to assign responsibility for this to anyone anyway - I can only look forward at this point since it can't be undone.

What DOES do me good is to look into every possible explanation and treatment. If their fear of being blamed gets in the way of that b/c they are afraid to explain things or tell me certain info or "admit" anything is wrong, well, that makes me upset and I will hold that against them if it continues.

And it's ridiculous b/c I already signed away my right to sue them for anything.

So why not just tell it like it is?!

Thank you for all of these tips, and don't worry about giving me too much b/c I'd rather have too much info than not enough. I'll make a list of new things to ask for at next appt.

The refraction print out was from that machine at ophthalmologists office. Although at the surgery center last week they did the machine and the "which looks better" refraction exam and after both of those still said I'm 20/20 in that eye with no astigmatism and they also said the same thing about right (bad) eye actually looking better on exam than the left (good) eye.

Sigh.

At least the 2 docs agree. I guess that's something.

[oneblurryeye]

Oh and I think they both did topographies, too, because the pictures I see of that online look like the pictures ophthalmologist showed me. He showed me a black and white printout. At surgery center they do everything digitally so they didn't show me anything, but they had me sit at 3 or 4 different machines.

[oneblurryeye]

Oh my goodness, Rebecca, I just read your whole story! Wow. What you've been through is just unbelievable. And your determination inspires me too. Also, now I totally get what you mean about how things can get worse before they get better. And I can so relate to what you said about supermarkets being overwhelming - that is one of the hardest things (especially when my kids are with me and I can hardly pause long enough to try to read labels and can't concentrate on what I'm doing b/c I get so overwhelmed.) Also, I tried to go to a movie theater once over this past month and it was a complete and total nightmare. My vision went crazy, the cold air was killing my eyes and things just kept getting blurrier. I had to walk out after 40 minutes and wait for my family outside. Anyway, you can bet I'm heeding all your advice!

[oneblurryeye]

Oh also who is the doc you saw in Dallas? That's very accessible to me. Thanks!

[oneblurryeye]

Wait, that was wrong, I'm right eye dominant! I was just explaining the test to someone and when I did it again I realized I messed it up the first time. Repeated it a bunch of times with different objects and it's definitely right eye.