Can't move on

[fiddle]

Hello everyone,
It has been 10 months since my lasik eye surgery at [deleted] and I have suffered 7 major complications ([the clinic] told me my odds were less then 1% for anything to happen and if so all would be gone in a few weeks). Some of these issues are for life now I have been told (corneal scars, dry eyes, regression, star bursts, the loss of my night vision, and light sensitivity). My question is how does one move past this now as I am so depressed and saddened by this outcome. I have tried so hard to move on but just can't get there. I have trouble sleeping (eye pain is a part of this), and spend most of my day covering my eyes from the light and to rest them. Quality of life is so poor now, I live with a fear of going out and having to find my way around with disfigured sight that my eye glasses don't help with. What has worked for others who have had a similar experience? Please help, I don't want to live like this anymore.
fiddle

[Margaret]

I'm stuck in the same situation. My eyes are ruined from Lasik (13 months along now) and my night vision is deteriorating as well, along with debilitating dry eye. I don't have the answers yet. I have reached out to many veterans on this site though and they all say the same thing over and over again to me: it will get better. At first I assumed "it will get better" meant it will all go away. It doesn't. It means that somehow they all climbed out of hell and reached the other side and have lives beyond dry eye. I cling to their collective words hoping I will somehow get through the other side too someday. I have three children and a wonderful husband all patiently waiting for that day to arrive as well. For me the hardest parts of climbing out are the fear of tomorrow (and 20 years from now), the variablity of my eyes from day to day (always dry, but sometimes a 8-9 on the pain scale and sometimes 3-4 on pain scale, averaging 6-7 everyday with moisture chambers on 24/7), and wondering if I'm suppose to DO something to make me better (more treatments or what). I wonder what we're all suppose to learn from this life changer. I wonder if things will get better to the point where I can wake up and think about other things than my eyes. I wonder if I can continue on with my goals for my children and myself when I can't read much or use the computer. I again will go back to the fact that almost every veteran I have talked to says it has gotten to the point where they can live a full life. Maybe a different life, with drops and goggles, etc., but a life that is fulfilling and a life that isn't enveloped in fear. I'd like to get to that point and then reassess my goals! Until then, I try to push away negative thoughts, if I end up in tears, then welcome them for a quick lube on the eyes and then push them back and stay busy. It's been working for the past few months, although I know that's not a place I can stay forever. I will need to try to move forward more than where I am now, but I'm hanging in there. I remember in the beginning I couldn't sleep and I had such anxiety I had to be put on meds to calm myself down. I learned to break it up into chunks - I'd say, ok, can't fix the dry eyes in the next year realistically so lets work on sleeping better. once I got the hang of that, I tackled the anxiety (not gone, but largely reduced for now). Now I'm working on my depression, which isn't going away anytime soon I have figured out, and am working a bit on new treatments for my eyes. We'll see. At some point I'm fearing I will have no treatments left and it's just me trying to get over this and live life. Like I said before, I haven't figured out how to do that yet. Still fighting mad and sad this has happened, can't figure out how or why, but I know I can't be selfish enought to take myself out of my kids' life and I don't want them to suffer for some stupid choice I made. If you don't hear from many other people it's actually because most of the Lasik veterans I've talked to aren't on the boards anymore because they have learned to move on. I used to be so sad when no one would answer my post, but it's largely because most are not reading them anymore! Not great for us people in limbo, but something to think about. Some of these people have had vision complications too, so there is hope for anyone on this board right now!

[fiddle]

Thank you

Thank you Margaret for your supportive words, it has helped just to connect to another who has had similar experiences. I too am not there yet and am not sure I ever will be as how does one accept ruining their eye sight, but yes day to day does go on. I will try to break it down into chnuks too and am happy to know I'm not the only one who comes to tears in the day (and yes welcomes the brief lubrication).
Thank you again and I hope to hear from others who are out there.
fiddle

[Margaret]

one more thing; for a lot of the veterans I talked to that seem to have similar stories, it seemed to take many of them 2 or even 3 years. I don't think it matters to me how long it takes, just as long as I can feel I've reached the other side!
Hang in there

[Guest]

You just learn to be happy anyways.

For me, I figured if a guy can get in a bad car accident (he hit a moose) and end up a paraplegic, and then go on to become a federal politician, then I can darned well figure out how to be happy even though my eyes totally suck. At least the rest of my body works. At least I'm not blind. Although I can't use my eyes for all the stuff I used to, at least I can still use them most of the time. If your eyes aren't there yet, they WILL get there eventually. It helps me to think of all of the things in life that would be so much worse... makes my own problems look less bad.

I have to force myself not to think about what I've lost thanks to LASIK... I have to force myself not to think about the future and what MIGHT happen to my eyes over time... doing that is not healthy for my mental state, so I try to avoid it... avoiding it gets easier with practice

Other things that help me, I have people in my life that would be devastated if I weren't here anymore - my kids, my husband, parents etc. I'm sure you have people in your life too who would be devastated if you were no longer here. I figure that since LASIK was our ultimately our CHOICE, we owe it to them to suck it up and figure out a way to be happy despite our problems. Fight like mad to claw your way back to happiness. Although it's tough to muster up the mental strength for this when you're in the pits, you have to keep trying... you'll get there.

Not sure how knowledgeable your docs are regarding treatments, but if they're willing to learn from a reputable source, here's the DEWS report - if your eyes are too sore to handle the whole thing, start with the chapter on management of dry eyes... just read it in little bits until you get through it. Then discuss the options with your docs.

http://www.tearfilm.org/dewsreport/p...DEWS-noAds.pdf

For now, just concentrate on making your life manageable with your eyes as they are... work on it getting through the next hour if that's all you can handle. Find things to do that you can enjoy even when your eyes hurt... When my eyes were at their worst, I spent a lot of time listening to audiobooks with a cold cloth over my eyes, listening to the comedy channel, listening to my favourite TV shows (opening my eyes a crack if I needed to SEE what was going on) etc. I learned to love sitting in my garage during rain storms if I wanted to use the computer... the increased humidity felt soooo much better on my eyes, although I'm sure I looked very eccentric to my neighbours lol Speaking of the computer, turning the brightness down really low is helpful, plus, you can use a little program called WorkRave to remind you to blink (I have mine set to go off every 15 seconds for a blink break... annoying as hell, but my eyes do WAY better on the computer with this system)

http://www.workrave.org/

If you're having trouble at work, do your best to explain to your boss what would make work doable for you... maybe shorter shifts... maybe you need mini breaks to run to the washroom to splash cold water over closed eyes... maybe you need to wear goggles (I know this one can the worst one to accept... but trust me, you get over it... the first days are the hardest, then you get used to it, and people are actually really kind about it) And besides, you're still in your first year post-lasik... odds are your eyes will improve greatly with proper treatment and time.... so whatever things you need to do to survive now will likely not be so bad later...

Good luck... you'll get better.. odds are, your eyes won't always feel this bad... give it time.

[fiddle]

Thanks Saag for the web links, I will give them a try. I have done all the mental processing stuff and know that others are worse off then me for sure, but the emotional side is the toughest it seems. I can't figure out why [the lasik clinic] told me no one ever reacts like this (emotionally, aniexty) to this surgery, they made me feel so bad about myself and this only added to the issues. Has anyone else come across this, where the place they had their surgery done tells them they're nuts (and the only one) because they find the healing process (or lack there of) stressful? I don't know why they would do that instead of trying to be helpful and supportive. I guess bad publicity as they are in it to make money, but they have a responsibility to their patients if you ask me.
The road ahead seems very uncertain right now (I do not have a support group of family to rely on, it is just me) and I know I have farther to go with the healing (I hope) but after 8 months there has been no change in any area and the dry eyes have gotten worse, so it's hard to hold out hope their is much left to come.
I take comfort in knowing that I'm not alone and others have had similar experiences (unfortunately). It has taken me awhile to find others like myself, but websites like this one are helpful I'm finding for information and support.
fiddle

[Guest]

Keep in mind that the people who performed your surgery have a vested interest in saying that you're just a freak case, or that you're just handling it worse than everyone else etc. This severe dry eye stuff is horrid, and anyone who tries to tell you you're crazy for being depressed over it is dead wrong. ANYONE would be depressed for a time when trying to come to terms with this. It's NORMAL to have ups and downs when something that effects your life this badly happens (ok... a LOT of downs...). That being said, we still have to fight back the depression, figure out how to make the best of our life anyways... see a counselor if you have to... try meds for depression if you have to. But keep fighting - if you do, you'll come out the other side doing much better (I really believe your eyes still have a huge chance to improve significantly with time... it's still early for you).

[fiddle]

You know I never thought about that Saag, being allowed to feel depressed over this that is (and that it's normal). I have been trying to force myself to accept this, afterall I did pay for it, but you're right, it is okay to be depressed (just maybe not live there, see I have my moments of smiles). I have said it is life changing in the sense that my quality of life is not as it was (or what I expected and hoped for). For now I am just a bit stuck I feel, more time for me and my eyes I suppose. Can I ask you why you think I will still get better results? It gives me hope but not sure why you might think that.
Thanks again,
fiddle

[Margaret]

As far as odds go, most people post Lasik do get "better" or to a place they can live with and manage day to day. I think that's what SAAG is saying, that you still have a chance to get to a more comfortable place. I get confused though because some veterans said for them they think time helped the most with healing while others have a routine (autologous serum, restasis, plugs, doxy, azasite, etc. or a combo of some or all) that they depend on to stay comfortable. i don't know where I will fall, or what I need to do to get there. Do I start a routine or would time have helped and now that I've started a routine I won't know if I can get off the routine, etc. Is waiting around longer to see if I'll get more comfortable make the odds worse in my case if I don't start a routine now? will allowing the inflammation to continue hurt rather than help? My eyes are usually a 6-7 rank of uncomfortableness with 9-10 sporatically and 3-4 (best days) sporatically. I save my ratings of 2 and 1 for any day I could go without my moisture chambers I'd like to hang around in the 3-4 or 4-5 more often. Don't know how to get there...

[fiddle]

I see what you mean Margaret, the improvement may be more of how I adjsut to my new sight as is, not the actual improvement of the sight itself. I get that but am no where near it yet and same as you not sure how to get there (yes fight to get back as Saag said). I too wonder about the drops and my routine and what works or doesn't. I have said to my docs on more then one occasion that I am ready to give up and just learn to live with the pain. Like you I have a rating scale and on a bad day (I call it a flare) it feels like broken glass is in my eyes and nothing helps at all (the drops feel like they are bruising the eyes). Good days are itchy and they burn (and this gets worse as they day goes along). Sleep has been a issue too as they are so bad at night and I have to wake up to put the gel or drops or both in throughout the night.
Let's hope there will be better days ahead for both of us, not sure I want to get used to this routine though, same as you. I still have more docs to see they tell me (2 more sp), but not sure how much more they can offer. One step at a time and one good cry at a time. It's been good to hear from you and Saag as like I said, nice to know it's not just me as [the lasik clinic] told it was, ha to them!
fiddle

[jivgil]

I read your story and was moved.
i did PRK surgery 3 years ago. The clinic didn't treat me properly in the first 3 months with artificial tears, and that caused all
the problems.
for 2.5 years it was terrible. Woke up every 1-2 hours in the night.
Terrible pain and dryness, depression, suicidal thoughts etc.
I told my poor wife I didn't want to live.
By some miracle, I have been cured from dry eye.
I know how it feels.
Also the clinic where I did it were very insulting.
I still need glasses now, and my sight have been slightly damaged.
Although I have been cured physically, my emotions still hurt, although it getting much better.
I think the more I connected with the clinic, the worse they did both for my
eyes, and emotions. They are very concentrated on making money, and proving their success.
They are less concentrated on the individuals who get hurt physically and emotionally.
I thought to sue them, but then I understood it will be much better for everybody just to give it up.
Anyway I really wish you recover, physically, and emotionally.

[zoso967]

jivgil, could you tell us what cured you?

[Guest]

Can I ask you why you think I will still get better results? It gives me hope but not sure why you might think that.

I'd read a study abstract ages ago that said it takes something like 5 years for the corneal nerves to fully grow back after being severed in LASIK. The lack of those nerves causes dryness... as they grow back and re-inervate the flap, in theory, there should be more potential for your eyes to produce tears on their own as time goes on. Since you're only 10 months out, I would think that odds are you'll improve still.

Do I start a routine or would time have helped and now that I've started a routine I won't know if I can get off the routine, etc. Is waiting around longer to see if I'll get more comfortable make the odds worse in my case if I don't start a routine now? will allowing the inflammation to continue hurt rather than help?

For what it's worth, this is my opinion...

re: inflammation hurting things - As far as I'm concerned, chronic inflammation does not do the body any good. This has been shown in other chronic conditions that have underlying inflammation as a cause (ex. asthma, rheumatoid arthritis etc) - for those patients, if you treat the underlying inflammation, they tend to end up better off than those patients who do not treat the underlying inflammation. This is oversimplifying things, but you get the idea.

Based on that, I see no reason not to try to get the underlying inflammation of chronic dry eye under control asap. Why allow that inflammation to cause further damage if there is a way to avoid it.

re: not knowing if it's working or not

I think you'll know... you know how your baseline progress has been going prior to adding a treatment... maybe you've plateau'd altogether... if you add a treatment and start improving after weeks or months of being "stuck", then you know it did something (assuming you can keep other factors in your life relatively stable)... Plus, after being on a treatment for quite a while, you can try going off it and see what happens - if you get worse (all other things remaining the same), you'll know that treatment was likely doing something... if you repeat this several times and get the same results, odds go up that it's not a coincidence...

[fiddle]

Saag [the lasik clinic] has suggested I try restasis but I am unsure of this as I don't trust them anymore or their medical advice (or lack there of). What are your thoughts on this drug? I know there is another spot here for this topic too, but it is also said to work for eye surgery. I have heard that once you go on it you have to be on it for life (I've chatted to others who've tried to come off it and their eyes were worse then before), but [the lasik clinic] is saying just try it for a few months (despite the fact that it takes 3 months to work at all).
Margaret have you tried this yet? If so how did it go for you?
That is good info to have about the corneas taking so long to heal, so maybe things will get better. I grain of hope is better then none as some days there is just none.
Jivgil, where did you have your surgery done and did you report them (not that one is any better then the other)? Thank you for the good wishes too, the kind words help a lot. I think it's terrible that these companies are more interested in money than patient care. The way we have been treated is awful and when you need the most help is when they offer the least. I am still uncertain if half my problems were caused by negligence on the part of [the lasik clinic] (lack of diagnoses in the first few weeks and my corneal scars, which can cause dry eyes too). I have now reported them to health Canada as that is the next best thing we have to the FDA in the states. I am hoping in time the light will be shed on the true dangers of this surgery and the real odds for complications.
fiddle

[Guest]

Saag [the lasik clinic] has suggested I try restasis but I am unsure of this as I don't trust them anymore or their medical advice (or lack there of). What are your thoughts on this drug? I know there is another spot here for this topic too, but it is also said to work for eye surgery. I have heard that once you go on it you have to be on it for life (I've chatted to others who've tried to come off it and their eyes were worse then before), but [the lasik clinic] is saying just try it for a few months (despite the fact that it takes 3 months to work at all).

Honestly, I'm scared of it... not because there's any proof that Restasis is bad for us, but more because there's no proof that long term (ie. decades... 20, 30, 40 years) of use is safe. People that take the drug by mouth can get some nasty side effects - I know we're not swallowing the stuff, so I'm probably just being paranoid... but it's just the way I feel.

However, at the moment, it's the least scary option, so I'm using it... and I'm using it 4 times per day. I figure I could either use steroid drops or Restasis to bring down the inflammation. Steroid drops they know for sure can cause problems if used long-term, whereas there's no known issues with Restasis at this time (I just hope they don't find out anything bad about it later on...)

I don't believe there is any evidence that once you go on it, you're stuck on it for life. Because my eyes have been sooooo bad, if I decide to stop Restasis, I'll do it slowly... maybe go down to 3 times daily for 6-8 weeks, see how I feel... if all is good, then twice daily for 6-8 weeks etc. I have no proof that this is necessary, but it's the method I think I'd be the most comfortable with. Restasis is on the top of my list for things to quit as soon as possible... I just really don't like that drug... but for now, it's the lesser of 2 evils (ie. lose quality of life if I stop it vs. fears of unproven long-term risks). Again, no proof there's anything to worry about long term... this is just me being paranoid

As far as how long to try it for, when I started it, I decided to try it for 6 months minimum. The reason for my thinking is that is takes about 4-6 weeks to kick in at all... plus, I'd seen studies showing that some patients showed continuing improvement as the months went on, which plateau'd after 6 mo. on Restasis.. sorry, don't have the link... but most of the studies I read were found on PubMed (if you feel like searching for them) I was worried that if I tried it for less time than 6 mo, I might have given up on it too soon and missed out on something that might have helped me. That being said, it seemed to me that things were improving bit by bit after only 4 weeks on it, so it was an easy decision for me to continue on it after that.

My biggest regret looking back? That I used nothing but artificial tears and Blephamide every 3rd bedtime for almost 4 years... my old doc insisted all that time that I was doing "GREAT" (picture ridiculous big grin on his face as he says this) and that nothing else was needed. I believed him. Stupid of me, especially since I was perfectly capable of researching treatment guidelines to find out for myself. I wish I'd done the research and demanded more aggressive treatment much earlier... maybe I wouldn't be in the situation I'm in today if my eyes had been treated more aggressively back then.

Whew! Sorry to be so long-winded!