Diana's story Part 1
I NEVER WANTED A STORY TO TELL
I have extreme LASIK-induced dry eyes. I wear air-tight goggles in my house, in my car and outside. I avoid public places, and shy away from social gatherings. The moving air of shopping malls and grocery stores intensifies my constantly burning eyes. I am terribly sensitive to sunlight, even with tinted goggles. Dry eye pain and burning wake me in the middle of every single night. I can no longer read or watch TV for pleasure.
I am living a crisis, and have only managed the outcome of my LASIK surgery with the support of my family, friends, the grace of God and my inner strength.
I never wanted a “story” to tell. My 30 something years had always gone reasonably smoothly for me. My general health had also always been good. For these blessings I was grateful and still am. The icing was the most loving and understanding husband a woman could want, and two beautiful children who by far have brought me more joy than anything else in this world could ever touch. But I do have a story to tell, and I want people to know it.
It’s amazing to me that the account of a simple, twenty-minute LASIK procedure should be preceded by such profound words and deep reflection. The surgery was supposed to simplify things for me. I would be able to take my children to the pool and not concern myself with water spots on my glasses. I could hold my babies without the worry of little hands pulling eyeglass frames off my face and sending them across the room. My reasons for LASIK were even as elementary as just seeing my clock in the middle of the night, and identifying scattered toys in the hallway when a sick child called for me in the night.
I list all of these logical reasons for choosing LASIK for my own therapeutic benefits. It’s a good reminder. I avoid recalling the more selfish reason I had for seeking LASIK: I was self-conscious about my appearance and simply didn’t want to wear glasses any more.
My yearning to be free from eyeglasses started in high school. Soft contact lenses served my quite well for a while, and for that I was grateful. They made life easier for me. I found caring for them a privilege more than a chore, and was stringent about their treatment. Still, in time protein buildup from daily wear and heat disinfecting did their damage. I landed a case of giant papillary conjunctivitis (GPC) and was out of contacts for years.
Later in college I did manage to get in another two or so years of contact lens wear. Finally, I developed an intolerance to them after a severe head cold. This also coincided with a change in prescription that required a thicker, toric lens.
For the next decade I accepted my fate and knew well to be grateful for my gift of vision, as well as the timing of my existence. How did the nearsighted population cope before the invention of eyeglasses? I suppose I would have attached myself to a “hunter” and myself handled the close-up chores. My prescription was roughly –6.75 in both eyes, add a bit of astigmatism. There wasn’t much to see without my glasses.
I experimented unsuccessfully with contacted lenses during annual eye exams. Several doctors I had seen over the years were very willing to work with finding me a tolerable lens. I would wear a sample pair out of the office only to peel them off my miserable eyes when I returned home. I did, in fact, wear a sample pair of contacts on my wedding day. I endured an entire day of itching, burning and poor vision just to avoid wearing glasses on that day.
So I had built my case for LASIK. Multiple optometrists told me that I was an excellent candidate for the surgery. Looking back, I find this outlandish since contact lens intolerance is a symptom of dry eye, and is a contraindication in LASIK surgery. The paradox, of course, is the fact that many people seek LASIK because they cannot tolerate contact lenses. But the thought remained in the back of my mind for years that LASIK was something I may do when the time was right.
My husband and I discussed the possibility of my having LASIK surgery every time a friend of ours would report his or her success. I started to get serious about it. Financially it was finally feasible, and the technology was there. Why wait for something better; something better was finally here.
I sought out two LASIK surgeons with good reputations in town. Those LASIK facilities touting “pay for one eye, get the other free” were avoided. I would not be persuaded by techniques reserved for used car sales. Nor would I buy based on price. These were my eyes, my vision and I cared about them.
The doctor I chose was the most expensive in town. He was well-respected and not the local television LASIK “hot-shot”. The surgeon I’d chosen was the very one who’d performed my own optometrist’s LASIK surgery. My LASIK doctor assured me the surgery was safe. The video I was shown in his office explained that the laser used surgery would need to pulse 200 times just to penetrate the human hair. The procedure was done on the surface of the eye, and certainly looked harmless and not terribly invasive.
Diana's story Part 2
Though I consider myself a very thorough, logical person, I easily shrugged off those details my doctor could not answer. “What about long-term?” I’d asked.
Nobody had any data on long-term complications of LASIK, he explained. The surgery hasn’t been done that long. Still, my surgeon assured me that if he thought there was anything dangerous about the procedure, he would not be doing it.
“Okay, doc, then what about those people I’ve read about on internet sites who tell horror stories about refractive surgery?” I said.
His claim that those individuals were poorly screened made sense to me. They must have been the ones falling for the “two-for-one” deals at bargain basement LASIK centers. I further justified that I was with an expert, a doctor no less, and would be screened appropriately.
So I signed that blasted informed consent form, surrendered my apprehensions and scheduled my surgery based on my doctor’s hunch that all would be just fine for me.
But things were not and will never, ever be just fine.
The first three months following surgery began my nightmare. My eyes had become so dry that I could not see clearly and I was very uncomfortable. My eyelids literally dragged across my eyes. In fact, I wore goggles constantly just for the relief of maintaining humidity on my eyes. I recall driving my son to preschool in those early days after surgery, blinking constantly just to see the road. I cannot even begin to illustrate for anyone just how maddening it is to cope with constant fogginess and intermittent blurring of the eyes. I can only compare it to the mistiness one may see upon awakening in the morning before blinking away the filminess of a night’s sleep. It is a fact that one cannot have quality vision without a proper and healthy tear film.
My doctor didn’t have any effective remedies for me. I used every kind of over-the-counter eye drop available for my condition. These only offered temporary and incomplete relief. There was no miracle drug for him to try. I nearly laughed in my doctor’s face when he suggested I take a special vitamin for dry eyes containing a massive dose of an omega-3 fatty acid. I knew no vitamin was going to cure this. It would take no less than an act of God to put me in a comfortable place. It was at that moment I knew I was truly in trouble.
During frequent and increasingly desperate visits to my surgeon, I was continuously assured that within 6 to 12 months all would become normal; dryness was a typical and temporary result of the surgery. He also assured me that he had never seen a dry eye LASIK patient whose tear film did not return to “baseline”. As absurd as this sounds, he may not be lying. All he had to offer me in my state of extreme discomfort and anxiety was a vitamin and a heartfelt suggestion, “Maybe you should be looking at other parts of your life.”
And with that bit of lousy advice I parted ways with him. He has not examined my eyes since I passed that magical finish line where he assured me my tear film would return to baseline.
Soon after, I found an online “community” of people who are very much like me: they had been misled by their LASIK surgeons and were paying the price. Upon finding these people with whom I had so much in common, I fell into a deep depression. Their stories legitimized my own.
Some of these people had been suffering for years, even since the days of radial keratotomy. And they’d been trying to find solutions to their dry eyes and serious vision problems for years. I learned that during my LASIK surgery my corneal nerves had been permanently damaged, causing my debilitating dry eyes. Research indicates that these nerves never regenerate fully. These nerves were key messengers in sending healthy tears to the surface of the eye. Gone was my hope that I would ever live happily and comfortably.
I managed through the “post-traumatic” depression, and have been coping one day at a time with my condition. I take a lot of comfort in the support of other post-LASIK sufferers. Most have debilitating dry eyes and pain due to nerve damage as well as severe visual problems: contrast sensitivity loss, blurry vision, double and triple vision, halos, starbursts, induced astigmatism, and LASIK- induced higher order aberrations which underlie many of these visual symptoms.
These victims are amazing, bright people who include physicians, college professors, successful business people, research scientists, administrative assistants, athletes, mothers and fathers…all continually looking for solutions to their problems and many are striving to educate the public about a popular and dangerous “mainstream” surgery. We offer comfort to each other, and rejoice when someone finds a solution that improves the quality of his or her life. We ache every time another victim joins the ranks.
As for me today, the best I can hope for is a medical breakthrough in stabilizing tear film. Until that time, I will continue to battle severe eye pain, eye muscle strain and depression caused by the unending pain and guilt associated with having agreed to this risky surgery.
I continue to seek medical advice from eye doctors, endocrinologists, pain specialists, holistic doctors, acupuncturists and anyone else who I expect might offer me some relief. And I have spent a great deal of money doing it. In addition, I’ve tried every pharmaceutical product on the market indicated for dry eyes, as well as herbal remedies, natural supplements and even non-FDA approved pharmaceutical preparations. Thus far, I’ve not seen any real or lasting improvement. Topical eye drops give a very small amount of relief, and only for a few minutes.
Nonetheless, I am blessed with a family that I can still care for. My young children love me despite the goggles and all the goofy rituals I do to manage through my day. I live today in deep sadness that my husband and I had hoped to grow our family, and have not found in me a healthy mental “window” in which to allow it. It is said that pregnancy exacerbates dry eye. One day I may take the plunge, and learn to cope as my symptoms intensify. But I am wary.
This has a difficult story write, and agonizing to read. It is impossible to put into words the sadness LASIK has brought to me and my family. I implore anyone who might be considering LASIK or any elective surgery to research it carefully. A twenty-minute LASIK procedure, intended to improve my vision, completely altered the direction of my life. It has blinded some, ruined careers, is to blame for suicidal thoughts and actual cases of suicide.
My future is uncertain. I am terrified of the systemic and hormonal changes aging will bring. A severely dry cornea is in danger of corneal erosions, conjunctival thinning, and could eventually reduce my vision. I can only pray for a solution to this maddening condition. In the meantime, I will work to challenge the “LASIK” community who continues to downplay the risks of this surgery. I see the need to be progressive in vision correction, but LASIK is definitely not the answer.
Reading your story brought me such sadness. I felt like I was reading my own life story. I feel your pain so much. We can only hope and pray that help is soon on its way. Thank you for sharing your story. It honestly helps me to know that at least someone (and many others on this web site) know how I feel and what I am going through.
I hope this was a good day for you.
Thanks for your response. I wrote this story for many reasons, one of which was so others like me would have someone with whom they could identify. Some day I also hope its impact will dissuade a would-be refractive surgery candidate.
I will continue to pray for you, me and everyone else touched by refractive surgery, and one day we will find a solution. Kyle, do keep in mind it's very early for you. Things could really turn around. I have seen people "graduate off" of these sites.
Take good care of yourself.
Thank you so much Diana. You know that "graduation" will be even better than my college one I'm sure.
I hope you don't mind, but I have passed along the connection to your story to many, many of my friends who are considering having lasik done. Our stories are so similiar there is no point in me writing my own. I too hope they read your story and decide not to go through with it. If just one, just one, person had told me this could happen to me...I would never, ever have had it done myself. I don't know why they keep situations like this such a big secret. We should at least have been made aware of the fact that our lives could change drastically.
I will keep praying for you, me and all the others going through this.
Have a good day.
You'e made my day, Kyle. You pass that story around as far and wide as you like.
Your story is heart wrenching. Although I have not had lasik, I do have severe dry eye and I can sympathize with how life altering it is. I can only pray that someday there will be better treatments for us all!
Hi I am new to your sight and happy to be here. My story is much like Diana's. I was wondering if anyone has heard of the Boston Foundation For Sight. They have developed what is called a scleral lens that fits over the "white" part of the eye. They refer to this as a "liquid bandage" is takes two weeks to be fitted for these. I am considering going there and giving this a try this fall. I would like to know if any one else has any more information on this, or knows anyone who has tried this.
I have looked into this lens and have had a long dialogue with a gal at the Foundation. It's a very expensive lens, though it just might do the trick. Have you exhausted the use of the more mainstream type lenses?
There are other scleral lenses out there you could try first.
You may find some "happy" stories with these lenses on the Sjogrens web site. Not sure what the address for it it, but it's easy to find.
Best of luck to you. Let us know what you do and how it goes.
Thank you for the reply as well as the input. No I have not tried any of the other lenses at this time I am grateful for the tips and I will let you know if I try something that works. Do the lenes they offer also have the ability to correct my vision as well? I would only assume they would. I currently use a pair of prescription "driving glasses" to clear up my blurry vision this becomes necessary at the end of the work day.
In my dialogue with the Boston Lens people, I learned a lot. You might pose your questions to them and see what they say. One thing I know about their scleral lens is that it doesn't rest on the cornea. A drop of articial tears is placed in the center before insertion. So, one is actually seeing through this fluid. This can cause some distortion in vision. The severity depends on the person. I'm certain, though that they can accomodate any prescription.
Still, you really will want to look into other contacts first. The Boston lens takes weeks to fit, it's not very convenient to spend two weeks in Boston unless youlive close, and it's exceptionally expensive. There are a lot of options out there. An optometrist willing to work with a complicated case (which I'm assuming you are) might be the best place to start.
Best of luck to you in finding your way. There is a very, very length thread on here somewhere regarding contacts. You might be able to pull some useful information from it for youself.
Sympathy for Diana
Hello Diana - I have just registered with The Dry Eye Zone and this is my first time reading some of these stories. I thought my problem was bad until I read your story. My situation started about a year ago, but I had no idea what was wrong. Both my eyes were really bothering me, but my right eye was unbearable. There was this horrible pressure behind my eye and terrible sensitivity to light, wind, dry air, etc. I went to my doctor who told me it was depression and wanted to put me on Zoloft. I declined and told him I knew something else was wrong. He told me to see my eye doctor, who also could not tell what was wrong. He then referred me to an Ophthalmalogist/Neurologist who basically told me I produced no tears of any kind any longer. But she had no suggestions and told me to go back to my eye doctor. He felt like an idiot because he never tested my tear output. I went back to my family doctor and asked him to have an MRI done to make sure there was no tumor or anything else causing the pain and pressure. He referred me to another Opthalmalogist/Neurologist who did the MRI (which was normal) and told me that because I had had RK surgery some years ago (before Lasik), that was why my right eye was so much worse. They had never warned me of this problem down the road. Because of the dry eye syndrome, the scar tissue from the RK cuts was affected even more. I had only had the one eye done. Now I am constantly fighting inflamation and infections in the right eye on top of the dry eye syndrome. It is unbearable. Some days it is better and some days it is worse. Like everyone else in these postings, I never can figure out what has made it better some days. Some stores have lighting that almost blinds me. There is one grocery store here in town that I don't go into because their lighting is the worst. The only thing I have found to even remotely help me is Systane eye drops, but I use those all day long. Restasis was a disaster - like putting acid in my eyes. Summer is the best, when it is humid. I went on vacation a few weeks ago to an island and found that my eyes hurt the least in years. Sure hope someone somewhere can come up with some help, but I don't think this is a very high priority in the medical field.
Good luck and hang in there. Gaye
Diana, thanks again for the input. To be honest before I found this site I thought maybe I was a complicated case. After reading all of these stories I realize my problems are not as bad as I once felt they were. My heart goes out to all of you. I don't think my "surgeon" wants to give the proper attention to my situation. I am 3 years post LASIK I initially was told I had 20/15 vision and it would eventually stabilize. I have never had the level of vision I had with glasses (A decision I regret often) not even close. I complained of blurred vision through out the day, with mornings being the "best" part of my day but that was brief at best. After 2 1/2 years I was told I needed driving glasses. When I asked why a person with 20/15 vision should need any glasses. He explained that he under corrected my left eye and an "enhancement" would be unadvisable due to the dryness I already have.( I would not have considered this an option anyway). They still contest I have 20/15 vision. I am using restasis and bio-tears not willing to let go of any possiblie solutions. I am able to see clearly when my eyes aren't dry (almost never)with the help of glasses. The Boston scleral lens was the only option I was aware of other than OTC drops and ointments. Having found this site has given me renewed hope. I would appreciate any input as these are all new possiblities to me. Thank you!
I just read your story
Hi Diana, I am new here and I just read your story. I am SO sorry for what you have gone through and are continuing to battle. I hope that I did not offend you with my vampire joke on the other forum, I have to wear dark glasses for light sensitivity, and I thought it was the same for you, I deeply apologise if I did upset you with that. I think you are an amazingly courageous lady, and you sound like a lovely person. Two things really strike me about your story, the first is what an incredible person you are, and the second is the fact that you feel guilty. Everybody is vein, I dont know anybody who isn't, it might vary a little, but we all have that aspect to us. What happened to you is not your fault at all. I understand the regret, but you are not to blame at all for what happened. The surgeon did not take responsibility for what he did, I hope you have taken him to court. You are very brave for writing this story, it must have been painful to recall the bad experiences, but you have done this to help other people. I can understand why you are so loved by your family, and I pray that relief will come for you soon,
Wow! I haven't seen nor thought of "my story" in a while. I won't reread it since it saddens me...I already know what it says. I wrote it some time back not so much to show fellow dry-eye sufferers what I'd gone through, but to help LASIK candidates make an informed decision if they happened to read it prior to their procedure. Feel free to copy and send it to anyone. It would appear that I "laid it on pretty thick", but I didn't. I just told the entire truth.
Incidentally, I did send this story recently to an acquaintance who was considering LASIK. I simply asked him to read this and some other "links" and at least postpone his surgery until he could think about all this. He did just that and never rescheduled.
Maria, there are some things you need to know. The biggest and most important of them is that I've been winning my battle with depression and am currently pregnant. I was nearly destroyed way back with the notion that I probably couldn't handle another baby. Well, I overcame that and took the plunge. I have four weeks to go. And though my eyes are an issue every minute, I now feel I can handle the responsibility of another infant. And, I have obviously managed to find a manageable place with my eyes. I am BY FAR not the worst sufferer among us.
What's more is that I've been using blood serum drops for the last 8 to 9 months. They seem to be helping me. It's possible that pregnancy hormones could be helping me also. I vote for the serum. We shall see. I am anticipating a rough December and early 06 due to lack of sleep and hormones. Still, I know I will persevere.
It would take a great deal of nastiness to offend me here on these boards. The best way to do that right now is to look at my belly and say, "Are you sure there aren't twins in there?" Fortunate for your own safety, that's not an option for any of you. (If I hear that again, I'm likely to commit a crime.)
But, vampire and goggle jokes are just what the doctor ordered around here. Keep the silliness coming. We need it desperately since the #1 goofball on this site is on sabbatical.
Thank you so much for your kind words, Maria, and your prayers. I do still need them! I also keep the DEZ and D'Eyealogues "posters" close in my thoughts and prayers. I am very confident there will one day be effective treatments for dry eye conditions of all types.
I have to tell you that when I read "My Story" I was very moved. I felt it was an inspiring story to all who read it and I have passed it on to the few potential LASIK candidates who come my way. I really believe you have a gift in life for writing, you are, in my humble opinion, very talented in this respect. I do not believe you "laid it on too thick". You are simply telling the truth as it happened to you, as I believe everyone here is. We are trying to make people aware of the fact that it "can happen to you". At the same time I believe writing things out in this manner has helped myself as well as probably most all of us. It gives me the feeling that "Yes! I was heard".
Thanks for writing your story,
Congratulations Diana you are a real inspiration! I wish you all the very best with the birth of your twins Let us all know how you go!
Thanks, you two, and you're welcome. I don't ever want to see anybody go through what us post-lasik disaster patients have. If I can help put a dent in the number of casualties, I want to. I also find it therapeutic to know I'm helping people cope just a bit.
Maria, you mention wanting to know "how I go" regarding my pregnancy...
Right now I'm totally obsessed with "when I go"! I can't wait to report on the birth of my new addition! Even as recent as a year ago I never thought I'd make it this far!
Diana: after so much time of being away from this forum I am so glad to read that you are doing better and that you are pregnant. Congratulations!!!! I wish you the best and keep us posted about your progress and anything that has to do with the development of new remedies for dry eyes. I am praying with all my heart for a miracle!!!!
Your story is heart wrenching
I found the lasermyeye site today and they were kind enough to send me to this site. Then I found your story. It is much like mine with a few exceptions. I am only 5 weeks post op but have Hasimoto's syndrome (autoimmune that affects the thyroid) and went into the procedure with dry eyes. I was told by the top doc in town that I was a good candidate and if anything went wrong he would fix it. Now I'm being told that he's never had a patient with dry eye syndrome this severe after Lasik. I have all my punctals plugged and am on Restasis and BioTears. I have to wear sunglasses in the house during the day with all of the blinds drawn. I can't drive or watch TV. Reading? Can't do that either. I too feel very guilty having done this to myself and my husband!
I thought I would find hope when I started searching today, what I found was a dirty little secret that the doc's don't share before the procedures. I intend to share your story and mine with everyone that I come in contact with that is thinking of Lasik.
Thank you for sharing your story, I wish you hope and light and a cure.
It was great to reread your story and the one thing now that keeps me going is knowing how many people we have educated about this surgery, the nurse came up to me at the drs. office today and said she will not have lasik surgery because of what happened to me. She has seen how this has affected my life ,but I am continuing to find the good things that have come out of this as you advised.. friends that are really true,an incredible son, daughter and husband .The kindness of some physicians and doctors and what I should now expect as a patient. A stronger faith which I had let slide before this. You do have a gift for writing and next time I am bringing in a copy of your story to my dr. (the regular physician).. Wouldn't mind laminating it though and posting it outside my lasik drs. office. Peggy
I am happy to know my story is doing so much for you. It's been effective in more ways than I imagined.
Laminating it to your LASIK doctor's wall may not be realistic, but you could slide it into a few magazines...
That is a brilliant idea!!!!! people deserve to know what they're going into, these surgeons are decieving people and getting away with it
I completely understand where you all are coming from about doctors not properly warning people. I am not a Lasik victim, but a victim of the prescription drug Accutane. My old dermatologist continued to tell me that there was nothing to worry about. He said the side effects such as depression rarely happen in people, and he NEVER ONCE mentioned dry eyes. I was not even aware there was such a thing as dry eyes. But now because I believe I might have had low tear volume before and not noticed, the accutane worsened it to a point where now I am suffering with the painful, daily struggle as everyone else. It is amazing that people put so much trust in what doctors say, even though some doctors that are really not trying to do anything else but increase their patient number and make a pay check!
Like you Untkicker 29 my dry eyes and lid margin disease is due to the drug Roaccutane and I wish Id never come across the stuff. I didnt know dry-eye existed till just over a year ago but boy I know about it now. The Dermatologist never mentioned dry-eyes. On my appt. to see him last week his Registrar told me he was in Trinidad on holiday (nice for some, I informed her, mine was ruined due to this condition). I am looking into the matter of the Roaccutane having an effect on the Androgen hormone and affecting the glands. I've had some really good advice on this site and am touched by the heartfelt stories of the members and the debilitating effects this condition brings and pray that someday relief will come for all. My present regime is visiting a Chinese Herbalist in York(UK) and considering hypnotherapy to deflect my constant attention from the pain and burning as well as the usual stuff, drops, compresses and supplements.
Kind regards to everyone, wherever you may be.
Juninho, what is your schrimer test results? TBUT? What other tests have been done on your eyes?
I have been told by three doctors that my meibomian glands are fine, but I just dont have enough of the aqueous layer to my tears.
Have you tried punctal plugs?
How long ago did you develop dry eyes and have you seen any improvement since then?
Untkicker 29-schirmer test was very poor 3 on left and 4 on right,doctor
said 10 was average score.I had 2 silicone plugs fitted about 4 weeks ago.
They say my glands are blocked and gave me a month course of Doxycycline.
Ive had dry eyes just over a year now.Im pressing for some further tests
to see if my Androgen levels have been affected by the Roaccutane.
Talk about wise after the event I wish id never come across the drug.
I had poliomyelitis as a child and that was difficult but this eye thing
is something else ,it has your focus constantly.
Im praying I get some relief soon,put it this way it hasnt got any worse
I see you play football,any good?I played at a decent level but am
Regards to everyone,
I am the placekicker at the University of North Texas. Hopefully, if everything falls into place like I hope, I will have a shot at playing at the next level.
Did the punctal plugs not help at all? I have been torn between getting them or not, and still have not giving them a try because the last thing I want to worry about is a problem with the plug on top of dry eye!
Finally! "Untkicker29" makes sense!! I have been puzzling over that! I'll have you know I have just impressed my sons (age 13 & 14) by telling them that one of the people I "talk" to is actually a real, live football player.
I am a Packer fan, my husband is a Bears fan, the 14 year old is a Titans fan, and the 13 year old is a Vikings fan. Sundays are pretty interesting in our house.
But we all love the Badgers!
Hi Untkicker29- I've had upper and lowers about 5 weeks now. I have severe dry eye syndrome due to lasik. They placed temporary plugs in the day of my procedure, three days later I was in excruciating pain. When I went back to see the opth. I was told they had placed 3 day plugs in by mistake. Now I have permanent plugs and wouldn't go without them dispite the risks. I won't have them surgically closed though. The plugs are however NOT comfortable. They really get you when you turn your eyes hard to either side. They do have temporary plugs that last about 3 months that you could try. Since they dissolve similar to the 3 day, they don't have the "head" on them and don't hurt. Hope this helps.
Originally Posted by untkicker29
Good luck with the decision.