Researching options for severe dry eye & sclerals

[sparkywitz]

This is my first post:

I was fitted with fabulous scleral lenses last year and thought my Kerataconus and severe dry eye problems were solved, but soon after, I learned that my eyelids, with incomplete closure, are really the cause of my severe dry eyes. I've tried almost everything non-surgical, and the pain is really off the charts if I wear the lenses for even a few hours (though they feel great). I think I am at the end of the line with this. Tarsoppathy was offered to me, but I really freaked out hearing this, as I can't imagine being disfigured. Another person suggested Platelet Rich Plasma treatment. Another suggested Prokera, a seemingly smaller version of Amniotic Membrane Replacement. I am hoping to hear from someone who has had this combination of problems (needing to wear sclerals and having severe dry eyes, which prevents me from wearing them). I would really be interested in hearing how this was resolved, since I have read a lot of pretty frightening accounts here about Amniotic Membrane Replacement.

I need to educate myself about the options quickly. Any help greatly appreciated!

Karen

[Rebecca Petris]

Karen,

Hi & welcome from another scleral lens wearer.

May I ask what kind of sclerals you're wearing, and how long you've been having the pain problems with them? Can you describe the pain? Any activity or environment that seems to particularly trigger it or is it always just based on how long you've had them in?

Boston sclerals are worn by many people with extreme dry eye (Stevens Johnson syndrome, GVHD, cancer patients and the like - folks with no tear film at all to speak of) successfully, so I am always hopeful that if the pain is related to the lenses, dry eye or both it may well be a solvable problem. Some ideas that come to mind off the top of my head are:

- Plasma treatment. Are the lenses plasma treated for optimal wetting? If they're a year old could they possibly need resurfacing? (I had some problems recently with one of my sclerals partly because of an aging surface.)

- Lubrication. Do you have a good lubricant to use over the lenses?

- Removal & refilling. For some people, removing & refilling the lenses every few hours is an acceptable option if they can't get comfortable for longer than that.

- What do you fill the lenses with? Sometimes people have better success using a non-preserved artificial tear to fill the reservoir rather than saline.

- Moisture chambers. Some people need to wear moisture chamber glasses while wearing sclerals.

- Have you had the fit checked by whoever fitted the lenses originally (or another equally good expert)? Eyes do change and sometimes the lenses that used to fit perfectly no longer work as well.

Oh and I almost forgot! About that lid closure issue. If you have incomplete lid closure during the daytime and this is affecting scleral lens wear, is this a really minor closure issue (poor blink) or a major constant opening? If it's minor, I would hope that moisture chambers and a good lubricant (assuming all lens related issues have been addressed) could improve things. If major, what about some kind of eyelid weight, either the external kind or implants?

[sparkywitz]

more info from scleral lens wearer with dry eyes

Hi, Rebecca:

You were kind enough to speak to me by phone several months ago because I was panicking about the tarsoppathy. You reminded me that if I had my eyelid closed, I wouldn't be able to get the lenses in and out (good point!).

So we addressed all the issues you ask about in this post; everything about the lenses and fit are good, including the coating and liquids associated with wear. The big problem is eyelid closure. I thought wearing Tranquileyes at night would make a big difference, but it doesn't seem to be enough. I also bought a watch that reminds me to blink every 10 seconds. I feel like I have done everything possible, and now, I can barely keep either lens in at all. And I pay for it afterwards, whe I've gone to sleep feeling just fine. The pain shows up hours later. Even when I don't wear the lenses (they've been out most of this week) I still get this tremendous throbbing pain I've read about from others with severe dry eye problems.

I am headed back to Miami to see Dr. Tseng next week, and wanted to educate myself as much as possible before I see him so I can press him with other solutions to the lid closure issue. I would like to learn more about platelet-rich plasma treatment, Prokera and anything else, including a transplant, in case I have to have one to see. Right now, I am living a very small life behind my glasses and it is just miserable. If anyone you know has information about this, I'd sure appreciate it. I am also talking to at least one or two corneal specialists by phone to get their thoughts about other possibilities for me before next week. Please feel free to call or email me if you prefer.

Karen