I've been having g a hell of a time with it. I wake up at night sometimes with my eyes so dry it feels like the skin is being ripped right off my eyes. I've learned to put drops in my eyes before I open them even if it's in the middle of the night. I'm using some Omega 3 drops and some Miro 180 cream the doc recommended. My left eye is worse. The doc put a "bandage" clear contact on that one 2 weeks ago, I go in Friday for a look see. He has mentioned cornea transplant a few times. I'm hoping he doesn't say it Friday. I was diagnosed with corneal Guttata back in the Navy years ago. I'm reading 3 of 10 reject transplanted corneas.

No, I do not have Fuchs Disease. However, you have the best eye center in the country in your backyard. My buddy who is an opthamologist has mentioned it a time or two. Here is the link: https://umiamihealth.org/bascom-palmer-eye-institute

I have a type of corneal dystrophy but not Fuchs (mine is EBMD - epithelial basement membrane dystrophy) and brother, I feel your pain. I’ve tried many different drops and have recently found some success using a combination of Muro 128 ointment at night and FreshKote drops during the day. Also taking fish oil supplements for dryness, but not sure how much impact that is really having. Corneal specialist has suggested trying debridement (scraping) if it worsens, but right now it’s fairly stable. So far, transplant hasn’t been seriously mentioned, but I suspect one day we might get there. Mine started in one eye only, and after about a year developed in the other as well. I can live with the discomfort - biggest struggle for me is that my vision is usually a little different every day from the constant tear/repair going on in the cornea. So there’s really no way to get a refraction and Rx for lenses when your vision varies constantly.

I have also noticed the stats on rejection of corneal transplants. Not encouraging. Plus, anything that involves stitches in the eye is just nightmare fuel.

Aquilon,

I also had ebmd. I had PRK and part of the process is removing the outer layer of the cornea. I had it for vision correction. The added benefit was that when the layer grows back the ebmd is gone. Much longer recovery, but lasik was not an option that I would get a good benefit from due to the ebmd.

Sorry to derail the original thread.

Scott

I was told, consistent with your PRK experience, when they remove corneal layers they will typically grow back without defects - at first. However, in some cases, the defects will return. Specialist said some people are good to go for several years, in other cases the defects return within weeks. He was also candid in saying that the pain is horrendous for the first few days, and I would want to find him and kill him. So I haven't wanted to mess with that until it becomes much worse.

How long was your recovery following PRK? One eye, or both? How long ago did you have it done?

Tommydogg, I don't know if they can do any sort of debridement or PRK treatment for Fuchs. My understanding is that Fuchs is a defect in the endothelium, which is a deeper layer than the epithelium. I was told by my local specialist that Duke is the go-to place for corneal dystrophies - might be worth looking into. I would definitely want a second opinion before agreeing to attempt a transplant.

If your vision is satisfactory and you're just dealing with severe dryness at night, the first thing I would recommend is a dry eye ointment or gel ...

ex. Celluvisc, Genteal Gel, Refresh PM, or Lacrilube are some examples - all are OTC

See a corneal specialist before doing a full corneal transplant ( they can replace just the corneal endothelium with a DSEK procedure )

Good luck.

MDS

Corneal specialist is definitely your best option as it sounds like you have both endothelial and epithelial issues. Muro is used to siphone off the build up of water that your cornea would normal get rid of through the endothelium. But it is a salt solution and can cause more dryness. The corneal transplant being discussed should only be a partial not a full thickness and they generally have good success. If your regular PC eye doctor (assuming an optometrist) is recommending you see a corneal specialist then I would recommend going that route. (Per my GF the Optometrist who provided this advice).

Thanks guys, I'm in the waiting room now to see the doc. He is a cornea guy in Vero Beach FL. I have not had much interaction with others knowledgable or experienced with cornea issues. Most of my uncles on my dad's side and my dad have had retina issues. No one in my generation has had them to my knowledge.

What did the eye doc say?

I was diagnosed with Fuchs disease(dystrophy)about 7 years ago.

I started noticing the symptoms at least three years before that-mainly when I read-which I did and do a lot; I needed more and more light(sometimes I would take the lamp shade off to get more light)and the pages would become blurry after reading for a short while.

The problem was that Fuchs and cataracts share some of the same symptoms(above). So the first ophthalmologist I went to diagnosed me for cataracts(he didn't catch the Fuchs).

I didn't have a good feeling about this doctor so I got a second opinion and this doctor fortunately caught the Fuchs disease(along with the cataracts). Because he didn't handle Fuchs disease he advised me to head over to Devers Eye Institute in Portland, OR.

At Devers there were(and are)two doctors that specialize in
the corneal tissue transplantation procedures DMEK and DSAEK.

Why is this important? Because, someone say, thirty years ago who had serious Fuchs Dystrophy(a degenerative disease) would have had to wait for a cornea donor(i.e. someone killed in an auto accident)and have that donor's whole corneas grafted onto his eyeballs.

But with cornea tissue transplantation, only the section of the diseased cornea is removed, and replaced with a graft of cornea tissue(they're able to get many grafts from a donated cornea).

To explain the procedure, one doctor used the analogy of wallpaper: say a section of your wallpaper is stained(I know, no one uses wallpaper anymore, but keep reading). Instead of repapering the whole wall with new wallpaper, only the section that is stained is cut out and replaced with a piece of matching wallpaper.

The procedure they used with me in 2014-right eye and 2015-left eye- is called DMEK, or Descemet’s membrane endothelial keratoplasty, a newer procedure. There's also a procedure called Descemet’s stripping endothelial keratoplasty or DSEK as well as, I believe, one or two other variants of this procedure.

It's been five and four years since I had the DMEK procedure (I had my cataracts removed at the same time)done and so far all has gone well. I remain 20/20 with corrective lenses(my eyesight would have been much worse without it this procedure, gradually becoming near blind and at the very least not being able to get a driver's license).

My night vision is much better now and the only time I use corrective lenses is while reading(I use reading glasses and don't use prescription glasses).

Below is a link to an American Academy of Ophthalmology article on the DMEK and DSAEK procedures with pros and cons of each:

https://www.aao.org/eyenet/article/is-dmek-on-rise-2

Now without insurance that covers it or Medicare(plus Medicare supplement insurance)-the DMEK procedure can be very expensive(people from the Gulf states-and lots of cash-fly into Portland all the time for this procedure). If your insurance won't pay for it, but you are nearing 65, ask your doctor whether the procedure can wait until you are eligible for Medicare.

This message has been edited. Last edited by: JD83,

Had one eye done at a time. Recovery was months. Lots of drops. Vision improved slowly during recovery. I had it done by a cornea specialist. Had the left eye done in 2017 and the right eye done in 2018. I needed a lot of correction and also had astigmatism. I have about 20/25 vision now. Don’t need glasses to drive, but I do wear them to sharpen things up. I only wear glasses when driving, fishing, golfing, hunting/shooting. Things where I would benefit from extra clarity.

Turns out my right eye is better for distance and my left eye is better for reading.

I no longer need reading glasses. An unexpected/unplanned result.

Pain wasn’t an issue for me. Followed the eye drops instructions very closely. I think the third day was the worst. But not bad enough to take pain pills that were perscribed.

After about a week things started to clear up nicely, then the “bandage” contact lens was removed ant it got worse again then slowly better as the surface re-grew.

It is all about managing expectations.

quote:

Originally posted by Aquilon:
I was told, consistent with your PRK experience, when they remove corneal layers they will typically grow back without defects - at first. However, in some cases, the defects will return. Specialist said some people are good to go for several years, in other cases the defects return within weeks. He was also candid in saying that the pain is horrendous for the first few days, and I would want to find him and kill him. So I haven't wanted to mess with that until it becomes much worse.

How long was your recovery following PRK? One eye, or both? How long ago did you have it done?

Tommydogg, I don't know if they can do any sort of debridement or PRK treatment for Fuchs. My understanding is that Fuchs is a defect in the endothelium, which is a deeper layer than the epithelium. I was told by my local specialist that Duke is the go-to place for corneal dystrophies - might be worth looking into. I would definitely want a second opinion before agreeing to attempt a transplant.

Some pretty detailed stuff up there thanks! Looks like right now we will go with a clear bandage contact on my left eye and drops and creme. In the fall, I will probably get the debrididing done to hold off transplants for some time I hope. My doc sends his transplant patients to the practice called out above in West Palm Beach. I go back in 3 weeks for another look see!

Sounds good. Thanks for the update.

I have something similar but the eye doc didn't call it Fuch's disease. I can't recall now what he said it was but I could find out with a phone call.

I went in for a simple routine eye exam and after two hours of blowing air into my eyes, looking with some sort of instrument into my eyes after putting some sort of drops in there, and poking my eyes with some sort of needle (there was more but you get the idea) he finally told me there's a problem. As I understand it he said there's something that controls the amount of moisture that goes into and out of your lens and that mine is broken. Mine only puts moisture IN which causes blurry vision first thing in the morning and such.

Within the last few months I've been having the same thing you're talking about with my eye lids sort of fusing to my eyeball. I have learned to open my eyes carefully when I wake in the morning and I can usually get it to unstick without tearing anything if I take my time. However, if I'm jarred awake it tears a bit and it stings like Hell. Then the water pours from my eyes and it's damned near impossible to see especially in bright sunlight once that happens. I've had to call in to work and tell them I'll be in as soon I can see to drive three times in four months. Well, actually those three times were within a few weeks, but once I learned to wake up without opening my eyes right away I haven't had such bad episodes.

My biggest worry is that in an emergency I won't have the option to lay there for a few minutes before opening my eyes, and if I have a problem I'd be damned near helpless. I can get out of the house without being able to see, but if I had to defend myself... that would definitely be a problem.

Anyway... thanks to the OP for posting this. I'm going to set an appointment with my Optometrist and see if this is a part of what I was diagnosed with or if this is something new.

My Dad has Fuchs and has had 3 surgeries probably 10-12 years ago. His issue was the innermost layer of the cornea. First was a cornea transplant. He had sutures around the circumference for 14 months until they were removed. It was very uncomfortable, always red, irritated and tearing. He said it felt like he always has sand in his eye while the sutures were in. So, when time came to do the other eye, he opted for a more advanced procedure, removal and graft of the inner layer alone. It failed, so they tried again. The eye didn’t respond well, and he acquired glaucoma as the pressure relieving drains in the eye became clogged. Follow up procedure to relieve the pressure and lots of steroids and drugs over many months saved the eye, but sight is severely compromised. My Dad is 83, sight in the good eye is fair at best, but he’s obviously reluctant to try a fourth surgery.

quote:

Anyway... thanks to the OP for posting this. I'm going to set an appointment with my Optometrist and see if this is a part of what I was diagnosed with or if this is something new.

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Sounds more like a problem with tear ducts. If that is the problem, he will refer you to Opthamologist to correct the problem. It is more common than you realize but easily treated.

Just got back from the eye surgeon, besides new lenses, I also need 2 corneal transplants!!

Why the transplants?

Fuch's disease. My eyesight isn't that bad,I wear readers but decided to take my driver's test early to avoid shit like this and failed it. I'm going to do some research before I jump into anything!!!

quote:

I was diagnosed with corneal Guttata back in the Navy years ago.

A little off topic Tommydogg but it may be in your best interest to file a service connected disability claim with the VA.