introduction and hoping for contact lens advice

[postrkdryeye]

I have been on other forums for post refractive surgery and it finally occurred to me to try here instead.

I rely 100% on contact lenses to get sort of normal vision, but I am having increasing trouble with a lot of mucus buildup, which makes it hard for me to wear them and fuction.

I had RK and redone in 1990-2 and a corneal graft on my lift eye in 1998 on
my left eye. I have fluctuating vision and lots of distortion. Although I
can be made to read 20/20 on a chart, I truly do not see well with glasses (distortion, faded vision, lack of depth perception, bluriness) and only wear them at home when I don't really need to do anything visually - like serious work. I rely on custom fit contact lenses for good vision.

Unfortunately, over the last 9 years, my eyes have taken to fogging up my
contact lenses with mucus. Ths problem has become worse with time. I have tried all sorts of high end lenses fitted by many of the doctors mentioned on this forum among others: WAVE, Synergeyes, several kinds of scleral lenses and several other kinds, all in different fits, sizes and materials. Sometimes I get a "honeymoon" and do well for while, other times it's bad from the start. So the fit and material must make some kind of difference for me but it is not the total answer.

This fogging tends to get trivialized by eye professionals, but this is such a
problem most of the time, I am having trouble functioning at work, and now
in my daily life. I mostly see things through a haze that varies in thickness and lately has taken a turn for the worse. This makes me tired, unwell, and unable to concentrate. I seldom get good eye days and I am running out of energy coping and am afraid I won't be able to fake it at work much longer. I spend many days getting very little done now.

I have blepharitis and atrophied mgs. I also have dry eyes with a tear duct blocked in each eye to keep my eyes wetter. I have been tested for allergies twice and tested negative for all 102 things. Being on antibiotics does not help and neither do hot compresses. I have used all kinds of allergy eye drops and steriod eye drops, as well as moisturizing drops in many high end brands, and they don't help. I have used flax seed oil (the real oil from the bottle, not pills) and it didn't stop the mucus although it helped take the edge of the dry eye pain. I have also tried vitamin supplements and they didn't help. I am careful to use only soaps with no dyes, perfumes or moisturizers.

I have outstanding lens hygiene and have experimented with lots of different
solutions, including Lobob, Meno-care and Clear Care, among others. It doesn't seem to matter.

A year ago, I had my tear ducts probed by Dr. ****** in Florida and got no
relief. He also said I had borderline test results for Sjorgen's Syndrome but this has not been confirmed through further tests. He told me I had a sort of lesion in my inner lid probably caused by my scleral lenses and he wanted to do conjunctival reconstruction/AMT and a lesion excision. I couldn't afford it and am afraid of more surgery. I saw a thread on the Dry Eye Zone about AMT results that scared me eve nmore.

Over the years I've seen literally hundreds of different kinds of doctors and many, many contact lens fitters. I am pretty worn out and desperate.

I tried to get advice from Dr. Latkany's office since it seems he's one of the few specialists I have not seen. If anybody who knows him has insight, I'd be grateful to hear it. His office charges $150 to even get answers to basic questions about whether he as any tests or treatments I haven't tried. I am concerned about traveling to see him only to get all the same tests done yet again or the same prescriptions. Or maybe he has new ideas, but I can't get any answers through his office.

Thank you in advance for your thoughts and advice.

[Rebecca Petris]

Dear postrkdryeye,

I am really sorry to hear your story. RK problems are such a bad scene - some of the very hardest post refractive issues to deal with. I always think the bad vision + pain thing is like adding insult to injury. Coping with one or the other is much easier than both, and unfortunately dry eye really impedes most of the potential 'fixes' for the vision stuff. I'm assuming the graft would have added a lot of dryness too.

Thoughts on current options:

1) Some kind of compromise with existing or new lenses, where the goal is something other than convenient fulltime wear. For example, I know people in Europe with sclerals who have to frequently take them out and rinse them and re-insert them. Very inconvenient - but still better than not having them at all.

I myself go through periods when I can only wear my left lens intermittently due to chronic GPC. When I feel it coming on, I cut down my wear time immediately, maybe take a day or two off a week and quite a few less hours each day, re-arrange my day to need less driving, and if needed wear only one lens. Note: My vision is similar to yours EXCEPT I can't see better than 20/70-ish without the lenses. So not wearing them full time is a compromise.

You said your lenses "fog with mucus". I think of fogging and mucus as two distinct things. I get mucus (esp. with a GPC flare-up till I get it under control), but I don't get fog. Are you getting both things? I know several people who have mucus issues with even the best fitting lenses.

I suppose you're doing #1 right now and it's obviously not working for you but just wanted to bring this up as it may, in time, be doable.

2) Another lens. Sounds very unlikely at this point as it sounds like you've exhausted what's out there. However, if you have NOT been fitted by either DrG in Dallas or Lynette Johns at BFS within, say, the last 2 years, with the latest technologies & lens designs at each place, then it might still be worth a whirl.

3) I'm not a surgery fan so I have nothing to say in that direction...

4) Some life changes to adapt to "different" vision. I had to go through that. It was only after I quit my job and was trying to figure out how to support us when I first got contacts that I could wear longer-term, and even after that I had ups and down. - Contemplating that course is much more difficult probably for someone who is technically 20/20 best-corrected. But it may be possible to transition to a different career that isn't as demanding on the eyes.

Other comments...

This fogging tends to get trivialized by eye professionals, but this is such a problem most of the time, I am having trouble functioning at work, and now in my daily life. I mostly see things through a haze that varies in thickness and lately has taken a turn for the worse. This makes me tired, unwell, and unable to concentrate. I seldom get good eye days and I am running out of energy coping and am afraid I won't be able to fake it at work much longer. I spend many days getting very little done now.

I totally understand this. Flashbacks to my first years after LASIK before I had any lenses that worked. And I had a number of false starts with lenses too.

Don't take this wrong please but are you being treated for depression? Most people need this at some stage in this very difficult process, either early on or later on.

I have blepharitis and atrophied mgs.

Has this been confirmed by meibography? was the doctor convinced the MGs couldn't be coaxed into action again?

Have you used moisture chambers at work for increased comfort? For someone very dry this should be a high priority treatment.

I tried to get advice from Dr. Latkany's office since it seems he's one of the few specialists I have not seen. If anybody who knows him has insight, I'd be grateful to hear it. His office charges $150 to even get answers to basic questions about whether he as any tests or treatments I haven't tried. I am concerned about traveling to see him only to get all the same tests done yet again or the same prescriptions. Or maybe he has new ideas, but I can't get any answers through his office.

Dr. Latkany is a really good guy but after all you've been through and the numbers of experts you've seen I don't know if it's worth risking a disappointment unless/until you've got a fresh specific idea to pursue. Hang with us here, I feel sure there is still hope for you.

[postrkdryeye]

thank you for responding!

Rebecca,

Thanks for taking the time to respond so thoughtfully.

The first issue you pointed outregarding taking the lenses out during the day. I have done this over the years in different ways. Finally, I understood that I may get away with one or two removals and cleanings with some benefit if I do it early in the day before things get really bad. If I wait or do it more than once or twice, the fogging starts up faster and gets worse I think because my tear film is so full of mucus by then and maybe my eyes are irritated, too. If I use eye wash, sometimes it can help but not usually or consistently.

The fogging is a combination of a coating on top, and usually the tear reservoir (in the sceral lens) underneath is either cloudy or has glops of mucus floating around, which is totally unbearble. Sometimes the coating is only on top or only underneath. If I am wearing Wave or Synergeyes, the fogging underneath can be a coating just like on top or there can be little chunks of mucus collected underneath, which is unbearable. I can cope better if it's coated on top only. But the general effect is that it's like looking through fog/haze or vaseline. When I have the contact lenses in, I also get mucus in the corner of my eyes, which does not happen that much or even not at all if I stay home for a day and don't wear them.

I can't see well with glasses at all anymore and haven't seen well enough to function outside of my home in them in more than 10 years. There is too much distoration and burriness, wild vision fluctuation with horrible eye strain and painful dry eye, so I am stuck using contact lenses 100% of the time. I would never ever wear contact lenses if I even had even mediocre vision with glasses and if my vision didn't fluctuate like crazy. Even prior to RK I struggled with contact lens induced dry eye, which is why I had RK done.

I don't think I had a meibography, but I did go to a top eye surface specialist, so I may have. I'm sure he's seen it all, and he was the one who said the MBGs were atrophied, and given that I took accutaine for several months 22 years ago, and that's when my eyes started becoming so dry (although RK made it so much worse), it makes sense. However, I have never tried any procedure to caox them into starting up again. Do you know what sorts of things are typically done? I would be interested in investigating.

I've never tried moisture chambers. But my dry eye problems are actually not unbearable when it comes to pain - as long as my eyes are covered with a custom fit contact lens - either sclerals or wave. I manage to feel comfortable in these kinds of lenses the entire day. If it weren't for the fogging, I would be okay because I also get good-to-excellent vision with them when my eyes decide to give me a good day. Even Synergeyes are mostly comfortable for me, but they fog up and do dry out by the end of the day. I also take a ton of ibuprofen to bring the pain level down.

Thanks for the insight on whether it may be worth a trip to Dr. Latkany's office. I think you're probably right and your advice helped me decide. Plus, his staff member who answered my emails, in which I begged for a little information to help me make a decision, literally said I would get the answers to my questions about what kinds of tests he performs and treatments he tends to use only if I came see him and paid $400. That's not a medical care philosophy I need at this time. I kept the email as a souvenir. It's one of my my better ones.

DrG may has some ideas to try that we had not explored before and we have emailed since I posted here. Good suggestion.

thanks again, Rebecca!
Diane