How to stop recurrent corneal erosions

[janie]

Dear Janet.
So, so glad you have found relief!!! That is awesome, and thank you so much for writing! Take good care, Janie

[LindaLa]

I had PTK laser surgery on June 29th due to RCE's the result of map dot fingerprint dystrophy. It took a couple of years to get an appropriate diagnosis. I am just past my 3 month post surgery mark and I am happy to report that the surgery was successful. I have a post (very long) that I have been working on. I didn't want to post it too soon as I wanted to be sure that I would continue to improve. There may not be much interest in it, but while I was trying to decide whether or not I should have the procedure, I looked for as much information I could find, and there isn't much out there. I still have dry eye, but have been managing it much better with a new regimen. My doctor has told me that I may occasionally get an abrasion but it should happen much less frequently and be less severe. I have not had an issue since I had the surgery.

[Blinks]

LindaLa,
I'm very interested in hearing about your PTK and your experience, how it went for you. My doc has recommended it for my corneal opacities, due to degeneraiton. Did you have mitomycin C? My doctor prefers to use that to minimize haze and prevent recurrence. I'm not familiar with map dot fingerprint dystrophy. Feel free to PM me. How was the post op pain managed? I've been warned it is significant. Did you have Prokera membrane? Sorry to be so full of questions and hope not to be intrusive. Just trying to learn what I might expect. So glad to hear you haven't had an issue since the surgery and glad you are managing the dry eye much better. So glad your surgery is a success!

[Rowanberry]

Coming a bit late to this, sorry, but I have just seen the post by Agoffin about hyperbaric oxygen.

I have been going for HBO2 therapy for years as a treatment for MS, I never thought about it as a treatment for RCEs. I had RCE's for at least six years before I asked to be referred to a consultant because of a previous horrendous experience in hospital and during that time I was having oxygen therapy so it did not help directly.

I was terrified to go to sleep and becoming suicidal so family forced me to ask for a referral (GP just treated me for dry eye) Luckily I got a very good consultant eye specialist and, as I said in my previous post, I have far fewer erosions though it has plateaued and they still happen every few weeks.

At my latest checkup, he said that my eyes are looking very clear considering how dry they are (I have a tear break up time of less than a second). I believe that the oxygen has prevented scar build up by speeding up healing.

I do not know if studies have been done but it is obvious to those of us who go that healing for any wounds, broken bones, damaged muscles is much faster because of the oxygen. The specialist who set up the therapy centres believes that a chamber in every ward would cut down post operative infections and pay for itself.

As the number of erosions has lessened, my eyes are not swollen and sore all the time. I think it is a vicious cycle as the erosions cause inflammation which make erosions more likely to happen. HBO2 may be a way to cut down that inflammation.

maybe not universal, but the treatment makes me sleepy. I come home and have a lovely nap in my chair (lying down makes my eyes drier). When my RCEs were at their worst this was the sleep that kept me sane!

R.

[rswisley]

LindaLa: Please post your experience - I don't care how long it is - I'll read every word! I had PRK to fix RCE a month ago and 4 days ago I had a RCE because my eyes moved as I was waking up before I could put anything in. I use Muro 128 when I go to sleep at 9. I get up at midnight to go to the bathroom (because I'm drinking about 100 oz of water a day since surgery - always thirsty!). I put Celluvisc in at midnite and when I wake up again between 3:30am - 7am, I try really hard not to move my eyes. I put preservative free drops in the corner of each eye. I pull my lid apart every so slightly and squeeze the drops across the seam of my eyes. Today I let that seep in for about half an hour - reapplying drops 2-3 times. I slowly open my eyes and no rip for last 4 days. The previous 3 days, my eyes were very scratchy for at least an hour or more when I woke up. Today, they weren't as scratchy and I'm thinking it was because I let the drops seep in for half an hour before I tried to open eyes. POST LINDALA POST!!

[Rebecca Petris]

rswisley,

I'm drinking about 100 oz of water a day since surgery - always thirsty!

Do you have any diagnosed autoimmune disease? been screened for Sjogrens?

Using anything to immobilize your lids at night? - Can you get bandage lenses till you have that erosion cycle under better control?

Today, they weren't as scratchy and I'm thinking it was because I let the drops seep in for half an hour before I tried to open eyes.

Probably so... when your epithelium is that fragile, it will tear at the drop of a hat.

[rswisley]

I have not been diagnosed with an autoimmune disease and have never heard of Sjogrens. I'm seeing a homeopathic doctor and ophthalmologist now for the problem. I'll ask both of them about it. I'm taking a homeopathic mixture of Phosphorus and Thyroid since after PRK surgery that I had to fix the problem. Before surgery I took a mixture of Euphrasia/Calendula. I also take an Omega 3 and XenoProtX (detoxification supplement). I did not have the insatiable thirst until a couple of hours after the PRK surgery a month ago. There is also a small raw spot on the tip of my nose that won't heal. I've been taking Staphysagria for about a month and it subsided, but it's slowly sneaking back (Homeopath Dr thinks this is related to RCE problem). I've had RCE for over 5 years, it's only been debilitating for the past 3-4 months. You hit the nail on the head - I feel like they would rip at the drop of a hat and would love to discover an underlying cause. I had a rash on my chest about 2 years ago that was never diagnosed. I have been under extreme stress. Do you think this could be brought on by stress?

[Rebecca Petris]

I'm seeing a homeopathic doctor and ophthalmologist now for the problem. I'll ask both of them about it.

Do. I mentioned it because of the combination of dry eye and (I gather?) dry mouth you're experiencing. Sjogrens is an auto-immune disease which attacks moisture producing glands so dry eyes and dry mouth are common. Blood work can help determine if it's happening but is not definitive.

Just to clarify... You had PRK (i.e. correcting vision at the same time as removing the epi to treat the RCE)? as opposed to PTK (more of a spot-treatment or just epithelium removal)?

I feel like they would rip at the drop of a hat and would love to discover an underlying cause.

You need not just any ophthalmologist. You need a really good corneal specialist, not one of the ones that's a fulltime LASIK surgeon like a lot of them but one that is actually interested in corneal disease. A general/comprehensive ophthalmologist does NOT have the right training for someone in your situation.

I would strongly suggest taking ample time to prepare for the appointment both by studying up and by preparing a few written things to help convey your history and concerns to the doctor. You may want to read an article I've written on getting good care for this sort of thing, especially section 6 about communication and preparing for appointments. If I were you I would ask specifically about:

- possible auto-immune screening
- ABMD (also called EMBD or map dot fingerprint dystrophy). Note that some people are only accurately diagnosed after visiting several doctors so it helps to be the one to voice the possibility.
- specific dry eye testing including checking both your aqueous (lacrimal) tear production and your oil (meibomian gland) production and if there seems to be any reason to suspect mucous involvement.
- This is a long shot and almost certainly not applicable but just mentioning anyway: ocular cicatricial pemphigoid. I only mention because of the severity of what you have, the difficulty of good diagnosis and the unusual non-healing patterns you're experiencing with other things, noting also that your homeopathic dr suspects connection. Again possible mucous membrane issue?

I had a rash on my chest about 2 years ago that was never diagnosed. I have been under extreme stress. Do you think this could be brought on by stress?

If you think stress may have been the trigger I'd say that's yet another reason to be investigating a possible auto-immune connection. I am not very knowledgeable about auto-immune diseases but I do think there's quite a bit of documentation out there about stress as a trigger.

[rswisley]

Rebecca,
Thank you so much for your thoughtful reply, I'm so glad I found this website! My ophthalmologist was specially trained in corneas and his business concentrates mainly on Lasik. I am very happy with his contributions so far. He is clearly excited about me being able to see better, but is also totally committed to stopping the RCE. He has complete confidence we can stop it. He is very supportive in after hours calls and totally supportive of my homeopathic remedies (most medical doctors are not). He also has pushed Omega 3 and no caffeine - both non medical suggestions. He performed PRK and characterizes it as a "superset" of PTK. PTK being a procedure to roughen up the cornea and PRK does that anyway while also correcting vision. He also did stromal puncture to the areas prone to RCE that were outside the sphere of the PRK. Today he changed my regimen to Oasis Tears Plus during the day and Celluvisc at night (replacing Refresh drops during the day and Muro 128 at night). I have consistently broken through the Muro for over a month, so it apparently doesn't work for me. We'll see how this new regimen works. I'm being screen for Sjogens in the next week. I'm also getting help from my homeopathic doctor to eliminate the stress. I hope I'm on the right path - but I have a long way to go!

[rswisley]

My new regimen of Celluvisc at night, soak with Refresh on awakening, and Oasis Plus during the day is working - 2 days in a row. This is the most comfortable my eyes have been in months. The soreness is not constantly there and there was no scratchiness at all today. Instead of putting Refresh drops in 6-10 times a day, I only use Oasis drops 2-3 times and feel much better. Youcan only get Oasis online, so am anxiously awaiting the delivery, because I've run out and will have to go 2-3 days without them. Hopefully, the Muro was causing most of the backwards progress and I won't have a problem! I've been on Omega 3, Thyroid/Phosphorous homeopathic remedy and Eurphrasia/Calendula homeopathic remedy for about a month.

[cebeth]

Hello all,
I am one of the unlucky ones with recurrent corneal erosion of the right eye after an injury 3 1/2 years ago. I have tried Muro drops and ointment, Doxycycline, anterior stromal puncture, diamond burr keratectomy (horrible!!!) and PTK. I also use Optive preservative free drops. I have tried Dwelle and Dextran as well and recently Freshkote. The only things that have helped have been a bandage lens 24/7 (I have been wearing one for almost 3 years now changing it monthly) and learning to keep my eyes closed upon awakening and putting in Optive drops and letting my eyes open slowly on their own as they stick together.
I went 9 months without an erosion (the longest time frame) and finally got a part-time job only to awaken my first day of work with the monster returning in my eye. My local eye Dr examined me a few weeks ago and the punctal plugs seemed to have fallen out. I go back to Philadelphia to see my corneal specialist next week. I am going to try Restasis-recently sent away for it as I have no insurance and it is to expensive here. The eye with the erosions has been painful all of the time for the past 2 months and I fear it may be due to some neuralgia, but my eyes are really dry so who knows. The corneal specialist wanted me to have another PTK the last time that I saw her, but I refused over a year ago and then I did well for so long. Now the erosions have returned. It is so frustrating. I had to stop working. I don't know how people deal with this mess.

[Rebecca Petris]

Oh cebeth how awful. I am really sorry. That must be incredibly frustrating - venturing out to work after such a long good period only to get broadsided by the RCE again.

I am curious, other than the RCE related to the injury where do you stand in terms of other factors - aqueous deficient type dry eye, meibomians, lid closure, etc? Do you have detailed diagnostic information on any of those things?

I know you've tried many things. What about scleral lenses? - I'm just wondering about the possibility of PROSE (I know insurance is an issue but I wonder if you'd qualify for their assistance programs). Obviously the majority of the problem is at night and sclerals can't be worn at night but I just wonder whether sclerals during the day might promote epithelial healing more quickly/effectively than the bandage soft lenses since the latter have to be on the cornea itself. - Also have you ever used moisture chamber glasses during the day? Just wondering if those might give you any increased protection in order to be able to work.

[cebeth]

Thanks Rebecca. I don't know the answers to the questions that you asked me. I am going to ask questions at my upcoming appt. I will say that none of my Drs ever addressed the dry eye initially as much as they should have prior to treating the erosions. Not a good thing for me. I didn't know enough about what was going on at first as well. As far as scleral lens, my corneal specialist mentioned them to me at the last appt. All I could find on the Boston website is that if you qualify for assistance, it would only be 40 % of the total cost so I know I can't afford them. I would like to get some kind of eyewear to protect my eyes from the wind, etc, but at this point $$ is an issue. I need to wear my glasses outside with sunglasses.

[Rebecca Petris]

Might want to call BFS and talk to someone to get the real skinny. I haven't heard the 40% thing, maybe that's current but I know people who have been through treatment there who could not afford any part of the cost (sometimes even the travel). Also re: eyewear - I have been meaning to mention on the forum, for those who need moisture chambers but can't afford them, I sometimes have some here available at no cost, either returns or items that have been donated by customers. I have a few pairs now... PM me if you're interested, or call me, 877-693-7939, love to help!! I have for example a couple pairs of lightly used Ziena frames with the silicone shields, you could put a cheap Rx lens in them at Walmart or someplace maybe if needed.

[LindaLa]

I am posting my experience with PTK in the success stories here, since I consider the procedure a success for me. I am sorry it took so long to post but I wanted to be sure the procedure worked before posting. Then we were hit with Hurricane Sandy. Finally things seem to be getting back to normal. I am in NJ, and my doctor is in NJ, but is affiliated with Wills in Philadelphia. She is also a dry eye sufferer which makes her more sympathetic. I am thankful that I finally found a doctor I can work with. I am now on a new journey to find a rheumatologist because I (along with my doctors) am beginning to think there is a link between my dry eye and a possible autoimmune disorder.