Hey y’all.

Now I know that our members have endured far greater pain than I’m about to describe, but for me, it’s the worst thing I’ve ever experienced.

My ophthalmologist diagnosed me last year with this weird thing called “map dot fingerprint dystrophy”, which essentially means that the top layer of my cornea could become detached. Well, last week, it did. Essentially the top layer stuck to the back of my eyelid and ripped the top off of the cornea. This exposed all the nerve endings. There was pain with the eye open due to contact with air; there was pain with it closed because the eyelid was touching it. The worst part is that there was NOTHING that could be done to help with the pain. The doc would use numbing drops for the exam (which was just BLISS), but he couldn’t give them to me because they would prevent any healing from taking place.

Lots of antibiotic drops, sleeping in a dark room, anti-inflammatory drops, and ointments.

The pain has FINALLY subsided, and now we are concentrating on getting sight back and clear.

What a nightmare.

I used to suffer from Anterior Uveitis in my mid to late 20s. Intense pain and photophobia. A flareup about every 2 or 3 months. I had tests for every known cause without result and it was classed as 'ideopathic'. It (knock on wood) hasn't reappeared for many years.

I feel your pain.

had iritis here. Sucks

I had a severe eye infection at the end of May. Either had a contaminant in my eye, or a contaminated contact lens. I ended up at the ER after midnight that night. The numbing drops helped until they could get me to an ophthalmologist the following day. He prescribed two antibiotic drops that I had to use every hour AROUND the clock for 5 days. He warned me that I could end up with a scarred cornea if I didn't follow the protocol.

You should see the sleep cycles from my fitness tracker. I ended up taking most of the following week off as the eye was sensitive to the computer monitor even after I turned it down a lot. The time off also allowed me to at least get additional rest.

The way I kept up with the protocol was to use the timer function on my iPhone. When you use that, the button at the bottom says REPEAT when the alarm goes off. I'd get up, hit the repeat button, rinse the eye with a saline rinse, put the drops in the eye, dab the eye with the tissue to remove excess, toss the tissue in the garbage, pick up a couple of clean tissues, then go back to bed. Rinse and repeat the next hour. I was able to do this without missing even one hour - that is 120 hours!

I had some numbing drops from the ER, but I was also discouraged from using them much.

BTW, when healing, you run through a phase where your eye will start to itch. While it isn't what you want, it means that it is healing!

I'm now OK, but I've noticed that the eye is slightly off when using my glasses. I have a referral to the ophthalmologist's optometrist, and will be making that appointment soon as I think the eye is stable now.

Yes, I can truly say I felt your pain.

Sorry to hear this Maestro. You have my best wishes on a speedy recovery.

quote:

Originally posted by Maestro:
Hey y’all.


My ophthalmologist diagnosed me last year with this weird thing called “map dot fingerprint dystrophy”,
Lots of antibiotic drops, sleeping in a dark room, anti-inflammatory drops, and ointments.


What a nightmare.

They should have applied a bandage contact lens, essentially a band aid you can see through, to cover the bare cornea while it re-epithelized. It does wonders for corneal pain, as would diclofenac (Voltaren) eyedrops or equivalent every 6 hours after a loading dose of one drop every 15 minutes the first hour. Oral Advil every four hours, with two Tylenol two hours later and then alternated (every two hours you're taking the other med) also is effective. You also should use Muro 128 ointment nightly as you sleep for a month to prevent a recurrence. Finally, stromal puncture can be helpful if you get these repeatedly.

The doc treating you didn't do you any favors.

Maestro, like many hear my stomach turned in knots when I read your post. I’ve only had a corneal abrasion from a pine needle, and it was truly awful.
I can’t even imagine what ripping off the cornea to expose the nerves would feel like.

Future reference, Bascom Palmer has an office in Naples, worth looking into.

quote:

Originally posted by GJG:

quote:

Originally posted by Maestro:
Hey y’all.


My ophthalmologist diagnosed me last year with this weird thing called “map dot fingerprint dystrophy”,
Lots of antibiotic drops, sleeping in a dark room, anti-inflammatory drops, and ointments.


What a nightmare.

They should have applied a bandage contact lens, essentially a band aid you can see through, to cover the bare cornea while it re-epithelized. It does wonders for corneal pain, as would diclofenac (Voltaren) eyedrops or equivalent every 6 hours after a loading dose of one drop every 15 minutes the first hour. Oral Advil every four hours, with two Tylenol two hours later and then alternated (every two hours you're taking the other med) also is effective. You also should use Muro 128 ointment nightly as you sleep for a month to prevent a recurrence. Finally, stromal puncture can be helpful if you get these repeatedly.

The doc treating you didn't do you any favors.

I forgot to mention that. He used a bandage contact lens, and my immune system was having no part of it whatsoever. I was back in the doc office the next morning, and he removed it, telling me that the immune response was too strong to use the lens.

We are using Besivance for the antibiotic drop; Prednisolone for the anti-inflamatory; and Erythromycin ointment at night and during the day as needed. He said that the Erythromycin will change over to Retaine PM after we get everything under control.

quote:

Originally posted by Maestro:
My ophthalmologist diagnosed me last year with this weird thing called “map dot fingerprint dystrophy”,

You're not alone, my friend. I've got it too. Mine is stable and managed right now with a combination of OTC treatments - Freshkote drops throughout the day, and Muro 128 5% ointment at night before sleeping. Took awhile to find this combination of the right drops and ointment to get it dialed in. Hope this keeps working for a good while to come, as the alternative treatments are corneal debridement, and eventually, transplant. (Word to the wise - don't Google corneal transplant - straight nightmare fuel.)

Hang in there!

Maestro, I definitely feel for you and wish you well in healing and some lasting solution should you experience continued pain.

Several years back when I had an aneurysm rupture, a year or so post surgery I was experiencing left eye pain. I went to my ophthalmologist and tried so many different treatments to include regimens of Restasis, and various eye care prescriptions, then had silicone implants put into my tear duct all with a link to dry eye condition possibly from the stroke that occurred during surgery to repair aneurysm bleed. My ophthalmologist finally decided to send me to his college professor a top neuro-ophthalmologist at the Bask and Palmer Eye Center here in Miami and after a few visits, scans, tests etc, he concluded that it was damage from the bleed/repair and that it short circuited my brains signals to the left eye. He told me that this was one of the cases where when mentioned the "pain is all in your head" this applied, and I was then relegated to a pain management clinic at Baptist Hospital where for 2yrs I was prescribed 24hr doses of morphine and other opiates. I couldn't tolerate the side effects after those years of treatment and went cold turkey to withdraw from the addictive side effects.

The pain is so unbearable at times these days that I keep a 20oz cold bottle of water in the refrigerator to hold directly on the eye for pain relief, which basically is just a distraction from the pain. I will also try a very hot shower and let it pound directly on the eye for relief. Other than that sleep is the only other distraction.

I can only best describe the pain when it starts ragging is like as if the eye is burning from being exposed directly to bleach or a raw burning from the inside out as best described as I can. So yes, I feel for you as an eye pain sufferer and hope that you get some much needed relief in your future.

In between so many ophthalmologist visits I've even tried acupuncture and other alternative approaches trying to find some relief. To this day almost 13yrs post brain surgery I'm still looking for some alternative approaches that don't involve the strong opiates for management, I'll never go that way again, though many need and can tolerate them for pain, I couldn't.

I'll also toss in a prayer for you as I understand just how bad eye pain can be at times and effect your quality of life, my best to you..