Woke up in tears...

[Katewest]

Acceptance is ok

"I had to accept my condition, I had no choice, but acceptance did not by any means mean that I had surrendered, in fact on the contrary I had just begun to fight." - farmgirl. Ok this is so true. Well put! I feel like once I accepted this condition I became more level headed and able to systematically try every possible solution. Before my crying and emotional break downs totally got in the way of that. Acceptance in NO way means giving up, it's just getting you closer to a solution.

[Hemu]

Patrick,

Here are the extremely limited circumstances where I do think you would have inflicted this upon yourself:

1. You were diagnosed by your doctors to be a HORRIBLE candidate for LASIK, so you put a gun on your doctors head and forced him to laser your eye.

2. You had met nobody who had had a GOOD life altering outcome of LASIK, all you had met were sufferes like us and you decided, "wouldn't it be cool to suffer like these people?"

3. You are a LASIK surgeon

This is an horrible side effect. You definitely did not CHOOSE this nor did you inflict this upon yourself. You were promised the moon, and in hopes of getting there, this happened. Mainly because the side effects haven't been taken seriously, for YEARS. 10-15 years ago, if you told someone that LASIK caused you dry eye, they would not even believe you. Shocking, isn't it?

There is absolutely no reason you should be guilty because even if circumstances 1 and 2 apply to you, no doctor should do anything to you to make you worse. That's the first law of medicine, never make a patient worse.

Once again, I repeat, this is NOT your fault.

[MeibomianGlandman]

Hey Ive been there lol, I have cried and yea it sure helped them eyes feel good after being dry for so long, It was weird after some time of crying my vision improved. But All I'm gonna say is if you have troubles, Do what I did, Turn to Religion, its the only thing help me get through if you ever need support let me know!

As far as this disease, yea I'm still in the fighting mode, but don't give up until you knew you done all you could do. I mean I heard new things coming out now. Lipiflow is now covered by some insurance company's and so is Meibomian gland probing, there worth a try if you have MGD and if you have sjogren's Syndrome, you have my sympathy.

The Cure to Dry eye Hasn't been come up with yet, but I'm sure more amazing things are yet to come. As of right now, I too have discovered I may never beat Dry Eye, but That don't mean I cannot manage it better and try to live a normal life...If you need any ideas or support you have my ear.

Sincerely,
Meibomianglandman

[soaps]

I had lasik too. My surgeon and my dry eye specialist had lasik too. i did blame myself but i believe my mistake was allowed by God and trials can be a blessing though it's very hard to c the blessing at times. somedays r hard but my motto is one day at a time. and u appreciate things so much more before i was rushing thru life. Having a great doc , much prayer and faith in God helps me.

i have told ppl about wat happened despite shame and have stopped four ppl from ha ving lasik. I also am so much more consious of those hidden health conditions in others . And have discovered who my true friends are. lots of blessing s though hard to c at times .

in terms of ur dry eye try everything in a systematic manner now while it's early days - best Dr advice .
Read these lovely verses the other day Numbers 6:24-26 (i prefer the old kjversion )

[soaps]

I had lasik too. My surgeon and my dry eye specialist had lasik too. i did blame myself but i believe my mistake was allowed by God and trials can be a blessing though it's very hard to c the blessing at times. somedays r hard but my motto is one day at a time. and u appreciate things so much more before i was rushing thru life. Having a great doc , much prayer and faith in God helps me.

i have told ppl about wat happened despite shame and have stopped four ppl from ha ving lasik. I also am so much more consious of those hidden health conditions in others . And have discovered who my true friends are. lots of blessing s though hard to c at times .

in terms of ur dry eye try everything in a systematic manner now while it's early days - best Dr advice .
Read these lovely verses the other day Numbers 6:24-26 (i prefer the old kjversion )

[Rebecca Petris]

The guilt thing is a real b****. Seems to me it strikes as randomly as tornadoes... kicks in ever so hard for some people and not at all for others, with no obvious rhyme or reason. I know people who got LASIK despite obvious contraindications (like Sjogrens), even people who sought out a surgeon willing to laser them after being rejected by more conservative ones, who then shrug off the side effects as just kind of something that happened... while others who were extremely diligent throughout the process kick themselves black and blue over a negative outcome. And I know lots of people who got dry eye from blepharoplasty for cosmetic reasons who never had any shred of regret or guilt over getting the procedure, just mad at what ensued.

I never really experienced the LASIK guilt thing myself. But in general I AM the kind of person who tends to blame herself and take responsibility for all kinds of stuff I shouldn't, so I certainly empathize with the misery of being pummeled by guilt! When it happens we have to pick ourselves up off the floor, don our gloves and punch back!

Sigh.

Soaps, here's one back at ya: Psalm 84:5-6

[patientpatrick]

all of your words of support and faith have been very important to me. I'm fighting to hang on to hope, which has been difficult to do. It seems with every eye doc appt I've been to the news just gets more dire and dire. The only doc that seems to think i'm doing fine. Is my Lasik Doc. He keeps saying that i don't have dry eye and there's many ways to treat this. He offered trying plugs finally, 13 months later. Seems a bit late in my opinion and i'm not sure i should have him do it. I called Kaiser today to talk to an Opthalmology nurse. Says they use Eagle Vision plugs. Seems like good plugs, has anyone had good experiences with this brand? or perhaps bad ones?

[Guest]

Have you found any docs along the way, other than your LASIK doc, who seem decent? If so, maybe consider switching over your care to them... wondering if the LASIC docs that actually do your own surgery want to somehow maintain plausible deniability about the severity of your dry eye and therefore try to NOT treat it aggressively since to do so would be admitting that it's bad? Maybe they are worried about you sueing them and want to make sure they can argue your eyes are actually fine... if they treat you, it would be admitting that they agree your eyes are NOT fine, right? Have no idea if this is true, and it seems totally silly in many ways, but it's just a thought...

As you may know, I left my LASIK dr. after about 3.5 years due to his failure to treat me (it took me that long to find out that there were loads of treatment options which had not been offered to me)... Incidentally, the dr. I switched to also had done LASIK, and at the time I started to see him he still did it once in a while, but it seems that the bulk of his practice was regular non-LASIK stuff, plus some teaching at the university... anyhow, the fact that he had done LASIK himself was a comfort to me since I knew he'd be well aware of what to look for regarding my flap (not that I had any problems, but at the time, it seemed like a plus)... the fact that he had done LASIK himself did not stop him from treating me very well... I have no complaints, and still see him to this day. If anything, I consider my seeing him a public service haha... now he's one more doctor that knows for sure that LASIK can cause severe dry eye, and he's been seeing me for over 4 years now and has seen how things have gone for himself.... he also saw the interview I did on TV, and I think that was a real eye opener for him also since he knew me as a patient, so I wasn't some random person who might be mentally unbalanced or exaggerating etc.

But I digress...

[Rebecca Petris]

Don't forget about the Orange County Dry Eye Support Group. Judi, who heads it up, is a great source for 'the real skinny' on dry eye docs throughout SoCal.

[patientpatrick]

SAAG as usual your words are encouraging and very helpful. I've seen 2 optometrists other than my Lasik surgeon. One I went specifically for a Dr Eye consultation. He praised my thoroughness on self treatment and had very minor suggestions to tweak my regime. He diagnosed me with Aqueous Deficiency (had a Zone Quick Test of 8-9mm half of what it should be) and Posterior Blepharitis/MGD. I've been doing warm compresses and lid scrubs for awhile and he said to keep it up. He also said to stay on the Restasis for a few more weeks and said it should be helping. He also did a TBUT and said I was 8 and 10 sec. Not good but not bad. Bottom line had a very good bedside manner and offered me hope. He stated that he's optimistic that I will get better. I asked him about plugs and he seemed hesitant because of my MGD, said they may help but may not....bummer of a way to end the consultation. He was very nice but didn't offer me a whole lot of options other than reassuring me I'd improve. Don't get me wrong hope is important. And it was in short supply for me for awhile, I just don't know if i got the help I needed, besides he wasn't covered by my insurance. So I went to see another OD who was covered. He rolled his eyes when he found out I was a Lasik eye. He did a TBUT test when i told him about my dry eye and he said it was 5 sec. At that point I got sad and mad. Either the previous doc was telling me something to make me feel better or something happened that day. Point being I didn't get hope and I didn't get treatment that day either. He referred me to an MD so we will see how that goes. I'm struggling with wanting hope and just wanting to come to grips with reality. It's a fine balance I know. Looks like the search for a doc to help continues.

Have you found any docs along the way, other than your LASIK doc, who seem decent? If so, maybe consider switching over your care to them... wondering if the LASIC docs that actually do your own surgery want to somehow maintain plausible deniability about the severity of your dry eye and therefore try to NOT treat it aggressively since to do so would be admitting that it's bad? Maybe they are worried about you sueing them and want to make sure they can argue your eyes are actually fine... if they treat you, it would be admitting that they agree your eyes are NOT fine, right? Have no idea if this is true, and it seems totally silly in many ways, but it's just a thought...

As you may know, I left my LASIK dr. after about 3.5 years due to his failure to treat me (it took me that long to find out that there were loads of treatment options which had not been offered to me)... Incidentally, the dr. I switched to also had done LASIK, and at the time I started to see him he still did it once in a while, but it seems that the bulk of his practice was regular non-LASIK stuff, plus some teaching at the university... anyhow, the fact that he had done LASIK himself was a comfort to me since I knew he'd be well aware of what to look for regarding my flap (not that I had any problems, but at the time, it seemed like a plus)... the fact that he had done LASIK himself did not stop him from treating me very well... I have no complaints, and still see him to this day. If anything, I consider my seeing him a public service haha... now he's one more doctor that knows for sure that LASIK can cause severe dry eye, and he's been seeing me for over 4 years now and has seen how things have gone for himself.... he also saw the interview I did on TV, and I think that was a real eye opener for him also since he knew me as a patient, so I wasn't some random person who might be mentally unbalanced or exaggerating etc.

But I digress...

[Guest]

Not sure how it works where you are... but here, only ophthamologists can prescribe stuff, not optometrists. For me, I find an ophthamologist (mine is a corneal specialist) to be the most helpful since it's a "one-stop shop" for all the stuff an optometrist can do (ex. plugs) AND, unlike the optometrist, I can get my rx's written (Restasis, autologous serum), plus they can do cautery if appropriate (whereas I'm not sure if optometrists can do cautery). Also, my GP told me it's best to get a referral to an ophthamologist from an optometrist, since the optometrists will know better than she does which ophthamologist to send me to. Again, not sure if this is true where you live, but worth asking around a bit to find out.

I think for someone on our shoes, who will likely need rx's at some point, the ophthamologist is the way to go... preferably a corneal specialist - I recommend focusing your efforts on finding one of those that you think you can work with.

As for test results being different with the 2 docs, I'd argue that maybe both docs got accurate measurements, but your TBUT really was different on those 2 occasions. I suspect mine can vary a LOT depending on how my eyes are doing on that particular day, and I believe that IF I'd ever had a schimer's done, that, too, would vary a LOT depending on how my eyes were doing that day.

As for whether or not there is cause for optimism on improvements, my vote is for optimism... once you get a handle on how various factors effect your eyes, what treatments help and which ones are waste of time/money, you'll get good at "babying" your eyes enough to function quite well, and even be comfortable most of the time (provided you take the usual "babying" precautions)

Interestingly, if my eyes are feeling kind of borderline to me, if I use drops in the waiting room while waiting for my appointment, the dr. will not see dry spots. If I do NOT use drops in the waiting room on a "borderline" eye day, then the dr. is almost certain to see dry spots. (Typical time spent in the waiting room is about 30 minutes for me.)

And of course, on a "good" eye day, no matter what I do with drops there will be no dry spots.

All this is just to say that for sure, both dr's test results may have been right, based on what they saw that day. One more reason why I don't care too much for test results - I'm more interested in what works treatment-wise for my overall comfort/productivity level.

[patientpatrick]

Thank you SAAG. It's all ironic really. My Lasik surgeon is a cornea specialist, in fact a highly regarded one. One of the big selling points for me was the argument that cornea specialists are the preferred experts in refractive surgery... blah blah blah. Anyway, I was duped i know. I have a few questions for you if I may ask.

First off, how do you define a "good" day. I know things have been difficult for you, I've had some good days I know and even on my good days when I go see an eye doc, there are dry spots. Maybe I don't have good days then i guess.

Second question, how is the punctal cautery going for you? Do your eyes feel good? normal? epiphora? I hope you're doing well. Please let me know how you are doing.

[Guest]

For me, a "good" day is one where as long as keep up my eye routines (ex. moisture chambers 24/7, drops, and other treatments) my eyes feel comfortable for most of the day. I may have to drop every 15 minutes, but I don't care as long as I'm comfortable in between drops. Of course, even on a good day I will still "notice" my eyes (unlike pre-LASIK where I rarely noticed them at all)... but for me, as long as whatever I "notice" is ignorable, I'm happy.

3rd cautery seems to have stuck so far - crossing my fingers that the third time is a charm and the darned thing stays shut... it's been just 4 weeks and 4 days... if I make it past 5 weeks and it's still shut, it'll be a new record haha

Yes, I do get epiphora, but I don't care... I'd rather be wiping away tears, or even blotting excess tears if they affect my vision since it's a heck of a lot better than the alternative, ie. being bone dry. Since this last cautery, I've been using waaaaay less artificial tears during the day... I often go a couple of hours now with no drops, sometimes longer, which is pretty awesome! (Of course, awesome is relative... before LASIK every 2 hours would have seemed ridiculous, but after where my eyes have been, it's awesome!)

My eyes will never be "normal" I don't think (if they ever get there, it'll be a wonderful surprise)... but they don't have to be "normal"... just reasonably comfortable most of the time (as long as I take all my usual precautions) and able to tolerate most of what I want to do.

That may seem like an unfair compromise to have to accept, but you'll see... eventually you just get to a place where you are "good enough" and you'll be happy anyways... trust me...

[nadz]

HUGE sympathies to everyone on this site.

My hubbie is 10 years post LASIK and suffered mild dry eye until last Summer. Then all hell broke loose - corneal neuralgia, ulceration, pingueculas were diagnosed (which hadn't been before) and 0 / 0.5 mm schirmers. By then he was in agony and still is. We haven't had much hope from eye specialists yet. Like sooo many sufferers survival is now a HUGE battle, mentally and physically.

SAAG - how do you sleep and for how many hours at a time? Sleep deprivation is a big problem right now.

PatientPatrick please hang on in there. NONE OF THIS IS YOUR FAULT! Your wonderful wife needs you to have hope and to carry on even if it's only one day at a time. It is exhausting to blame yourself constantly. Big hugs from us in the UK.

[Guest]

SAAG - how do you sleep and for how many hours at a time? Sleep deprivation is a big problem right now.

At my worst, I went through a spell where I was setting my alarm to wake me up every 2-3 hours so I could re-apply eye ointment. at the time, the only way I could tolerate such a thing was to tell myself that if I survived being up half the night with a newborn, I could darned well do it again... was rough, but you get through it. I tried the tranquileyes goggles for quite some time and they didn't help either... I've just stuck with a plain sleep mask ever since.

Now, I'm happy to report that I just sleep normally (with a sleep mask... I've grown to love not having the brightness of morning wake me up in the summer when it gets light out waaaay before I'm due to get up for the day haha).

Anyhow, I can tell when I've coated my eyes well enough with ointment (I use Hypotears ointment)... sometimes within a few minutes of applying it I feel like the ointment has moved and is no longer coating my whole eyeball.....my eyes start to itch - I reapply ointment to the itchy spots and all is well for the rest of the night. However, when I wake up, I can't just open my eyes or I'll end up with a scratchy spot for a day or two... sometimes sharp pain if I open too fast (although nothing as bad as some here have reported thank goodness)... I've learned to avoid this by never opening my eyes until I've leaked some Bion tears ever-so-carefully between my closed eyelids... once I feel the wet sensation over my whole eyeball, it's "safe" to open my eye(s). I have to be particularly careful where my plugs are, since it feels like the plugs get stuck to my eyeball sometimes... but as long as I feel the wetness of the Bion Tears leaking into that area, I'm fine. Most times it takes only a few seconds these days... but I still sometimes have a bad morning where it seems like it's taking a good 10 minutes to get them open (can't see the clock since my eyes are closed this whole time... but 10 minutes is what it seems like)

A lot of people here prefer gels at night, but I seem to have developed a sensitivity to them, so they are not an option for me. Drops don't do the trick either, so ointment it is!