Need help with dry eye exacerbated by EBMD and botched TN neurosurgery

[mgshutterbug]

Help! I am seeing both a corneal specialist, and a highly skilled ophthalmologist at a teaching hospital with an excellent reputation. But am wondering whether I should also go to a speciality clinic such as Wilmer Eye Institute. I use Muro 128 5% eye drops q 4 hrs during day, and Muro 128 ointment at nite. I also use very warm moist compresses minimum of 2x/day, 4x/day on weekends. I use Panopterex (now 7 eye) sunglasses, and transitions eyeglasses with eyeshield.

Suggestions for treatment?

[Rebecca Petris]

Hello and welcome.

Can you tell us more about your symptoms?

[mgshutterbug]

symptoms of dry eye and EBMD

Hi Rebecca
I'm 59, and I already had mild/moderate dry eye before the neurosurgery for TN. My eyes burned sometimes, sometimes hurt when outside in the cold, or when cold or warm air blew on eyes. Used Genteal eyedrops some for it, but for most part, just put up with it w/o using any drops.

The TN surgery damaged the nerve to the lacrimal glands in my left eye, so I have only a tiny amount of tear production in that eye. My eye waters, and sometimes itches furiously. I am unable to tolerate being out in the cold now for more than a few minutes, just long enough to get to my car from the apartment. It causes severe eye pain and dryness. And the eyeball itself is anesthetized from the surgery, constantly feels like I have something in it. I have no protective eye blink in that eye anymore.

Half my face is numb from the TN surgery, including my eyelid, the area above my eyelid, extending to the forehead, and scalp. The cheek area below my eye pains me intensely from the cold. What has helped me deal with the cold are the Panoptyx shield sunglasses, and transition glasses. They block the wind and cold, and warm and hydrate the air around the eye. The glasses help me a lot in the car too, because the heater fan dries eye instantly, causing extremely uncomfortable eyes.

So now I've said too much I'm sure. I appreciate your input.

Added to that, everything is further complicated by EBMD. My vision is blurry, can't get anything finely focused. I have white glare or halos around anything bright when it is dark. I am photophobic because of intense pain from bright light. Driving is a very difficult experience. Because of the combination of all of this, I was getting very frequent, severe corneal abrasions in the left eye. I didn't know what was happening, didn't see an ophthalmologist for 4 or 5 days, even tho I could barely see in the morning and most of the day. When I opened up my eyelids in the a.m., it pulled off part of the cornea. One abrasion was particularly severe, very large, in dead center of my pupil. I literally couldn't see anything at all. So they put a lot of drops of something in the eye, then patched my eye for 3 days. It was much better after 3 days, tho it took another 2 wks before it was mostly healed. I've gotten several abrasions since then, but they were much milder, and occur infrequently since I use the Muro ointment at nite, Muro drops during day. Still have to use Muro because the corneal pressure was high. Last time they checked it, it was finally normal.

So now I use the Muro drops and ointment still, probably for 3-4 more months per my doc. I use Genteal drops in-between. He prescribed Restasis also. I may not have taken it long enough, didn't see any changes, so stopped it. I also use samples of Blink that I was given. And I also was given Pataday for the intensely itchy eyes. I was told to use that sparingly, no more than 2x/day. I was also told to use warm compresses 4x/day, have been using very warm, wet washcloths. I see those who have written in here, use rice bags typically. Can you tell me more about that?

I had done photography as a sideline, have been unable to since all this. I can no longer manually focus, must use autofocus. Photography was my main outlet, it has left a big hole in my life. Not a lot of joy, since my job is causing horrendous stress. I know stress doesn't help any of this either. I'll stop typing.

[liz56]

Hi, Mgshutterbug.

I'm sorry to hear all that you are going through. I, too, am a DE patient with EBMD and had RCEs for about a year in 2007.

I never used them myself, but I have heard that bandage contact lenses work well for some people. Has your doctor talked with you about that option as a way to protect your left eye during waking and sleeping hours?

Best wishes to you,
Liz

[mgshutterbug]

Bandage contact lenses

Hi LIz,
Thanks for writing me back Liz, I appreciate your support and good ideas. I just read what bandage contact lenses were. They're something that they were going to apply the last time I had a milder corneal abrasion, I think. But do you mean they're something you would apply each nite to prevent tearing of the cornea w/first eye opening? The last c. abrasion I had was when I was wiping my eyelids and eyelashes w/warm washcloth after hot compress. I apparently accidentally touched my eye w/washcloth, tho because of anesthetized eye, I didn't feel it. But since I immediately developed extremely blurry vision, I figured it out very quickly.

I haven't really been told much about hygiene other than to use warm compresses 4x/daily, and to stroke the eyelashes both up and down gently to get rid of the ointment, drops residue. I was told not to use any soap or anything like that to cleanse the eyelashes because of the RCE. I got a speck of soap in my eye when taking a shower, and couldn't see at all. it got under the outer layer of the cornea because of the erosions. Had to have eye patched for 3 days. It took weeks to heal. And my vision never recovered to what it was before that particular episode.

So, that's a long way of saying, I need to ask my ophthalmologist a lot more questions, ask you all a lot more questions, and read and study much more.

[liz56]

Hi, mgshutterbug.

I have hard that people can leave the bcl in for over a week and others who put them in nightly. It depends on the type and your doctor's treatment, I suppose. But, yes, the idea is that they prevent the lid from sticking to the cornea upon waking. That's the idea.

I've never used a bcl myself, but I have heard that they can help people to heal with protection.

I really feel for your pain and frustration with blurred vision, due to RCEs. They can be hard to get rid of.

Wishing you the best,
Liz