I have some questions for anyone that can help.

[Phillips55]

I had Lasik in the spring of 2011 because my vision grew blurry in the right eye, and I did not like the astigmatic contacts. Immediately following surgery, I had a range of side effects like DES that have not gone away. Despite being treated for the dry eye for over a year+, my symptoms have actually gotten worse. Here are my questions:
-When I focus on anything near or far, my eyes rapidly strain and ache, especially the right eye. The pain in the right side extends beyond the eye into the eyebrow/cheekbone/nasal area all the way over to my right ear. Why is focusing so problematic? I've had TMJ in my right jaw for years and have read that can affect the eye muscles. Does anyone here any personal experience with this?
- I have only become sensitive to light in the last 5 months or so, why is this? Even the specialist at Mayo gave me the same routine that dry eye was the culprit. But my eyes are far less dry than they were a year ago, whats the deal?
I get the same massive ache/strain sensation when I am exposed to headlights etc. Lights, especially at night, just seem so much brighter. Before Lasik I used to crank the brightness up to the max on tv's/ipad, now I need everything at the lowest setting.
The doctor at Mayo also said that i have floppy eye syndrome. Has anyone else here benefited from lid tightening procedures?
I don't know if there is a more proper place in the forum to post this, i'm just looking for answers/similar experiences because I am beyond frustrated with the doctors I've seen...

[rm14dp]

Hi. I am in the UK. I had laser surgery in Oct 2011 and toric lense implants to fully sort the astigmatism. Like you immediately after I experienced pain in the bottom area of my right eye that radiates down my cheek and into my jaw. Within days I developed DES, Blepharitis MGD. I have received different treatments, but the pain persists as does the DES & Bleph. I cant read or use the computer for long, I had to leave my job because of this. My eye aches ( my left eye is fairly OK) when I concentrate on anything for long, I spend a lot of time "day dreaming" my husband calls it, staring into the distance not focusing on anything much just to rest them. Night driving is a problem, the lights/headlights hurt. In bright sunlight my right eye "darkens" like looking through very black sunglasses, if I shade my eye from the sun vision returns to "normal"
One consultant at my eye hospital said " possible laser damage to the nerve" in the right eye, they wont commit to anything more. And that I now have a "chronic" condition. I go from Doctor to Doctor to try to get answers, but at the moment have to instill Systane every couple of hours, and every couple of months steroid eye drops and Azyter to try to control it. One Doctor suggested that the nerve could repair, but it could take up to 5 years, so at the moment I keep searching and taking the pain killers.
Good luck - please post if you find the "cure" as will I ( seeing another Doctor in 2 weeks)

[Rebecca Petris]

Phillips55,

Setting aside dry eye and FES for the moment... Can you please share about any diagnostic information about your vision? Specifically,
1) What's your manifest refraction (that's the Rx they would come up with through the 'better 1, or better 2?" type test)?
2) What's your best-corrected acuity (that's how low you can go on the chart looking through the best lens match)
3) Has anybody done a topography. If so were there any irregularities visible.
4) Has anybody done wavefront aberrometry, and if so what were the results.
5) Has anybody examined you for possible binocular vision issues (i.e. the two eyes not working together properly). A mild version of that especially if coupled with some HOA could make focusing as difficult and painful as you describe.

If 3 and 4 have not been done they should have been. Those are tests I would definitely pursue if it were me. I have been where you are with eyestrain. Even if your acuity following surgery is good, technically, you can still get a lot of eyestrain from vision quality issues, which wavefront testing and/or topography can help identify causes for.

As for the radiating pain... which I've sometimes had too... this always makes me think of trigeminal nerve triggering. Good luck getting an ophthalmologist to talk intelligently about such things though. I'd focus on first finding an objective cause for poor focusing.

Disclaimer: I'm just a stupid layperson , these are just suggestions about things to investigate.

[abbygirl]

Hi rm14dp,
Your situation sounds very similar to mine. I had toric IOL's implanted in both eyes 3 years ago and had a severe complication in my left eye. I now have Blepharitis and MGD which I believe stems from all of the drops I was using for almost a full year. All of these drops had BAK in them too (oh how I wish I knew then what I know now)! I have the same kind of pain only in that left eye that you do only mine starts in the middle of the night and can last for hours. The pain is awlful and none of the doctors can figure it out. I do not think it is from the dry eye problem. This is definitely a different kind of pain. Have you had a confocal microscope test? That might help identify if your nerves have been damaged. I wish you luck and keep us posted!

[Phillips55]

Hi,
Thank you both for replying. To rm14dp, thanks for sharing your story and I'll let you know if I find anything that helps. To Rebecca, first I want to thank you for doing what you do. I know it's hard finding any positives in what happened to us through des/lasik, but people like you make a big difference in this world. Thanks for the questions here's what I can tell you from my records:
1) Manifest refraction: -.50 sph 20/25 and -.50+0.25 x 35 20/15 keratometry is 42.12/41.37x85 astig .75 and 41.62/42.62 x 61 astig 1.00 (Is keratoconus possible? Right eye just blurred all of a sudden 3 months prior to lasik and he should have waited a year.
2) It seems I'm 20/15 in my left and 20/25 in my right(although it fluctuates). The problem is that in the right eye the letters converge and look smeared even if i can make most of them out. Both eyes get blurrier in nighttime conditions. I eventually got glasses from my old Lenscrafters doctor and the prescription is os -.25 and od -25 cylinder -.50 axis 90. The glasses correct the sharpness issue in both eyes, even at night. In fact it almost feels I'm over corrected with them. They also mildly reduce the star bursting and light distortions i get. (I don't know if that is from the astigmatic correction or the anti reflective coating)
3) 4) & 5) None of the Doctors I've seen have done any of these tests. I will ask for them. The binocular vision aspect seems most interesting because even with glasses I get a mismatched sensation when I read or focus on anything.

I have read about the nerve issues and will explore that if all else fails, the vision and dry eye pursuits alone have almost become a wild goose chase for me, so to add the tmj and nerve problem angles is frustrating to say the least.
The hardest part of this seems to be an almost disinterest I've seen from these ophthalmologists. None of them have done any real testing for the dry eye and show no interest in the records from the lasik procedure. I thought that by going to Mayo they would dive into the problem, but the doctor I saw looked at me for a few minutes, told me I had FES and I should have my eyelids tightened, and walked out. (He had no answer as to why I didn't have a problem with dry eyes before lasik despite the FES) To make matters worse the performing surgeon looked at me and said that she doubted his diagnosis. What a waste of time and money. All the specialists I've seen are lasik doctors, It just seems like a conflict of interest. I can't seem to find a ophthalmologist that isn't involved in some way to Lasik. I wish I could find a professional that would just level with me. Is there anyone you like? Anyway I can't thank you enough for your interest in my case, and sorry If I've rambled too much. Thanks!

[Phillips55]

abbygirl, sorry to hear about your issues. I have not had a confocal microscope test but it's now on my list, thanks! From what I gather your issues occur mostly during sleep? Do you know if you grind your teeth at night or have TMJ? I've read that it can sometimes affect the muscles in and behind the eye. I have both those issues so I'm just starting to explore for possible connections. My doctor did prescribe me flexeril(muscle relaxant) for both my eye/facial strain and a separate neck problem, and it does help. I have no idea what that indicates, but it does make things more tolerable as I look for a real solution. I'm not a doctor so I don't want to suggest meds to anyone, but if we do indeed have similar problems, it may be something to ask your doctor about. Thanks.

[littlemermaid]

RM14DP, Have you been to Moorfields to see what's available currently and see what they think you should do? They've got confocal microscopes if needed.

[rm14dp]

Hello abbygirl, I havent had a confocal microscope test, but I will talk to my consultant about it. How do you manage your pain? I am reluctant to take medication, I have tried "pain killers" but none seem to help - even the strong stuff from the Doctors. I also think that the Bleph and MGD may have been triggered by the drops I had after the surgery, they were with preservatives = BAK. I was only using them for 3 months, but they damage was done. I have only used preservative free drops since then - including steroid drops and Azyter. Nothing changes though.

Good luck everyone in our search for answers. - ( for everyone of us who had a bad experience, there does seem to be those out there who havent. My friend had the same surgery, and she cant understand what all the fuss is about. She recommends it to everyone...!!! - If only....)

[abbygirl]

Hi Phillips 55..Yes, my pain starts 99% of the time in the middle of the night. It feels like it is behind my eyeball in the upper outer portion. It is a weird pain. Starts as a kind of burning itching pain and very quickly accelerates into a dull non relenting pain that radiates into my eye socket. I have had a Cat scan & MRI and they were both inconclusive. Thought it might be Thyroid eye disease. I never considered TMJ. I don't think I grind my teeth but it is another avenue to pursue.

[abbygirl]

Hi rmdp14, You asked me how I manage my pain and if I catch it in time before the pain is unbearable I can get by with over the counter Excedrine. That usually works for me. I don't like to take medication either and I was prescribed Neurotin but only took it afew times. When this pain strikes I really need something! I had a doctor tell me that sometimes people get caught in a cycle of pain and it can be difficult to break. Mine is not constant..very odd. I hope you find some relief.

[Rebecca Petris]

OK. Sorry I didn't follow up sooner.

3) 4) & 5) None of the Doctors I've seen have done any of these tests. I will ask for them.

You've had crap vision quality for nearly two years. You're obviously articulate in describing your symptoms. And of these presumably reputable doctors you have visited, not one has taken a topography or wavefront scan? That's awful.

Unfortunately it is true that if you are, or are correctible, to 20/20 or thereabouts doctors are often completely unmotivated to test further than a refraction unless the patient's severely symptomatic with poor vision quality... but that is so manifestly the case for you that I just don't get it. Sigh.

Try and get a humphrey topography if you can, or at any rate, whatever topography you get, make sure they print it out with a color map no coarser than 1/4 diopter. Even if the examining doc has nothing intelligent to say, get it electronically, email it to me if you like and I can get some informal responses from dr. friends. Betcha there's irregular astigmatism in that 20/25 eye. Anyway knowing one way or another that might help pin down what kind of dr. it would be useful for you to pursue for some real answers. - Though like I said I have a sneaking suspicion sclerals are going to end up being the answer. I mean, clearly you're not interested in more surgery, and for the vision stuff there's simply nothing more reliable than a gas perm.

Sorry you struck out at Mayo. I've rarely heard good things coming from there, though I had hopes after hearing from an enthusiastic patient. However that remark about the straw that broke the camel's back may be quite valid. Often happens. Doesn't mean though that by fixing FES you fix the dryness. These multifactorial situations can be very complicated and slow to reverse out. Can't hurt to address the FES with eyewear though. S'pose you're probably doing that already.

The binocular vision aspect seems most interesting because even with glasses I get a mismatched sensation when I read or focus on anything.

If you've got good insurance and/or aren't too concerned with the cash aspect, the best kind of doc to go to for this would be a pediatric ophthalmologist. However I suspect the right order would be to first fix the vision quality issues/irregular astigmatism and then see where there are any binocularity issues left.

The hardest part of this seems to be an almost disinterest I've seen from these ophthalmologists.

Yeah. There's three solutions, IMO:
One, luck out on a stellar doctor.
Two, work hard to find someone who's different or at least whose interest you can pique somehow so they start engaging their intellect in your favor. Please read my articles about the dr-patient relationship!! Check the Articles section (towards the top left).
Three, do part of their job for them (hyper-educate yourself, and use the dr. as a sort of overpaid technician).

To make matters worse the performing surgeon looked at me and said that she doubted his diagnosis.

Don't let that faze you. You are ALWAYS going to get different opinions from different doctors. You have to think of them as potentially cumulative, as opposed to mutually exclusive. Each doctor will look at you differently but each one may give you one new clue to a complex puzzle that needs unraveling. The rare gem sees say 75% of the picture, at a guess.

All the specialists I've seen are lasik doctors, I can't seem to find a ophthalmologist that isn't involved in some way to Lasik.

I'd give up looking, to be honest. I mean there are a few, but there are VERY few 100% untainted-by-LASIK doctors that are actually great people to go to for dry eye. The thing is LASIK funds the industry, period. People don't go to ophthalmology school to treat dry eye. But there's a big, big difference between the guy who runs a LASIK mill of sorts, and the guy who uses LASIK to produce enough revenue that he can indulge his true interests. I'd be looking for someone who is not a full time LASIK surgeon but has shown a longstanding strong interest in ocular surface disease.

Re: people you could see that I like, I'm always a little hesitant to make recommendations that aren't local (and I don't know anybody in Wisconsin). Maybe best if you give me a call. Happy to tell you some names but it would be helpful to get a thorough understanding of what you've already done and what the drs have been like first.

[Phillips55]

Rebecca, I really appreciate your interest in my case, I think I might give you a phone call soon. Thanks!