After years of avoiding erosions by awakening with my eyes still and adding artificial tears my RCES started happening in REM sleep as well as trying Muro 128, I finally resorted to surgery. So, the doctor did an epithelial scrape a few months back and that failed and I then had PTK done today. I must say although it is slightly uncomfortable, it is rather quick and a lot less painful then even a mild erosion. He sent me home with a BCL and even after only about 6 hours my eye feels just fine. He did not do PRK (which includes vision correction) due to a minor cataract which he said over the long run will be better to do PTK. I'm hopeful that this will once and for all resolve my RCES. I should have had this done years ago but one has to get over the fear of surgery and also find a good doctor they can trust. This ophthalmologic group I selected is amongst the best.
Hi Mike...instead of working I decided to browse the board as I haven't been here in a long time.
Anyway, glad to hear your PTK when smoothly. I'm jealous! My recovery was painful. I'm curious to see how things are going for you.
Well, I am 1 year 3 months post surgery. I'm so glad I had it done...but you've heard me say that before. Funny, just last night I had a minor erosion or "scratch" is what I'd like to call it. Seems to only happen when I'm on my meds (about 1 week out of the month) and the medication drys my eyes out. I didn't wake in the middle of the night to apply my Genteal Gel, thus the scratch. It happens so infrequently, I don't remember the last time it "scratched". Another observation is that the eye is now dry post surgery so I have to use drops and/or ointment at night, pretty much every night.
If you'll remember, I had PTK and PRK...it is apparent that the damage to my eye created irriversbile vision damage. I still have to wear corrective lenses, but that's okay. I'm getting older and can't see as well near anymore anyway.
Evie - things have been excellent for me. It was rather interesting because as you know I was successfully avoiding erosions by awakening and adding artificial tears before moving my eyes for four years. But, things fell apart when I started having major erosions in REM last summer. The doctor did an epithelial scrap which helped a LOT but I was still getting erosions and I was afraid that they would worsen. We did the PTK along with bandage lens therapy for a few weeks thereafter along with steroids and antibiotic drops. I no longer have the lens in and I'm down to only one steroid drop a day until the end of the week. I'm almost a month post PTK and things are wonderful. I'm not sure if things are going better for me because I only did the PTK and not PRK and/or I have a "top doctor" in this field or some combination. I have no dryness whatsoever. I know that PTK removes a lot less of the epithelium than PRK. So, it might take longer for you to heal up. But, you can always get a second opinion. My doc said he could not do PRK because of minor cataracts I have and eventually I'll probably need an ICL for the cataracts but that could be years away. In any event, things are really going well for me at this time and I'm glad I did the PTK and should have done it years ago. One would wonder if there are differences between PTK and PRK for corneal erosion sufferers or if it is more on the expertise of the doctor.
Mike and Evie!
You both are an inspiration to me!! I've been heading off erosions with Muro 128 every night for the past couple of years. But for the last month nothing is helping. I had the scraping done 2 weeks ago and it was great for about 4 days and then it was back with a bang! I need a miracle! I am trying to work 12 hour shifts with this mess! It really gets me down and is effecting my quality of life!! Please keep posting your progress!! I NEED to hear how you are!
Sorry to hear you are suffering. Those of us who have been through this know how trying it is.
I was just talking to a friend the other day, who asked me how my eye was doing. My reply, in short, was that it isn't 100%, I do still have to put a lubricant in at night...but that is a minor inconvenience considering all the misery the RCE brought me.
I have not posted for a while in this board. It was a surprise for me to know that Mike had the PTK surgery done! Please let us know how are you doing in the next few months. I was for a year and a half with the bandage contact lens in, changing it every two months, and so I could finish law school.
It was great while I had them. I barely felt them in the eye, I slept and did everything with them. If not for this alternative, I would not have been able to continue with life. However, two months ago, the doc removed them to see my reaction, and last week when awakening, I had a small erosion ( a feeling of strong scratch in the cornea) and keep the eye shut for a few minutes). Doc then put me in Lotemax (anti-inflamatory drops during the day) and muro ointment at night. For a week I was Ok and today when awakining I had another small erosion.. and felt depressed the whole day. I wonder what to do next... Could you shed some light on this? tks a lot.
sorry to hear you are still battling RCE. Before my surgery, I think I only could make it a few days when I didn't wear a lens before I had an erosion. That went on for over a year. I still had them with the lens, but about every 4 weeks until it became more frequent.
I'm doing pretty good these days (17 months post PTK). Sometimes I get little scratches at night if my eye gets dry (tends to happen when I'm on a particular medication). I still MUST lubricate my eye every night. It is rare that I don't do it once in the middle of the night. So...I'm not 100%, but I am not disappointed. It's totally manageable. I'm using Genteal Gel Severe at night. It seems if I put it in around 2:00-3:00 am...I can make it until morning. If I don't put it in, I risk having the type of 'scratch' or 'small erosion' you describe.
That is my experience. Right now my sibling, who had made it two years without an erosion, had a relapse and is going through BCL therapy again.
As it turns out the PTK only had me erosion free for about a month but reduced the severity of the erosions. So, the next plan was my doc (by my recommendations) put me on Doxycycline oral antibiotic and combined that with prednisilone (steroid drops). I was on the steroid for 2 weeks and I'll be on Doxy for 6 months. Now I'm off the steroid and I'm on Dextran drops (similar to Dehydrex). So far I have been erosion free for over a month. My research has show that one can still have erosions on the Dextran but they are less severe and they continue to happen with less and less frequency until they are gone. So far -all is coming along very well. The other thing I continue to do in the morning is I add artificial tears before opening my eyes to ward off any possibility of morning erosions. Thus far - this plan has been working well.
Freidi - the reason I had the PTK was because after being erosion free for 4 years, they started happening in my dreams. I woke up in absolute excruciating pain. The pain was a so horrendous and came on with a stabbing pain and what felt like spasms for 15 minutes and it was quickly increasing in frequency every night to as often as 1-3 times nightly. The epithelial scrape followed by the PTK "put it off at bay" but the moment I started feeling erosions coming on again my fear was they were going to again increase in frequency and pain which is how it happened in 2004. I can control them in the morning when I awaken by just keeping my eyes still and adding artificial tears, but in my dreams is another story. So far - everything is good.
Freidi I wil say it's interesting how some things work much better for some than for others and sometimes they work well at one time but not another. Clearly adding artificial tears upon awakening is always a good thing so that the eyelid does not "rub off" more cells than necessary. I tried BCL and I was getting erosions even under the lens at night in my dreams and they were just as excruciating (the doc was surprised). The only logic I can think of might be the "excess moisture buildup" under the cornea which is part of the theory on why Dextran drops (Dehydrex) is suppose to work which is what I'm on now.
Thank you for the response. So my felling is I will have to deal with this for the rest of my life, until the medical industry will come up with something more efficient. In the meantime, you said you are on dextran (dehydrex). Was it approved by the FDA? This is Dr Hooly's drops from the eye zone, isn't it? My doctor never mentioned to me about Dehydrex, neither Dwelle. Many people from the dry eye zone are happy with those drops. They say the frequency of the erosions diminished considerally. So, just to confirm: did your doc prescribe you Dehydrex? or Dextran? which one is FDA approved? sorry for the confusion, but this would be interesting for me to find out since I want to bring these drops as an alternative of treatment. Thank you for your previous quick and very detailed and useful reply!
My doc said that maybe he would have to put me on the BCL again. I had a hope that maybe the PTK surgery could have beena solution to my problem. But according to your and Mike's comments it varies case by case. Next appointment I will talk to him about dehydrex and PTK. thank you so much!!! and I will definitely be in touch!
I would like to know how are you doing with the dextran regime after the PTK. I went back to my old routine of running to the doc between an erosion. The problem is when I get there he sees only "dots" what he calls punctate erosions... is very frustrating. But I can tell you, these micro erosions, cause me enough pain not to be able to open the eye for one or two hours.... I went to the emergency room in the middle of an erosion, and when the doc saw me, it was gone, 2 hours later. My doc told me that if I have a worse attack, he wants to do surgery. He does not do PTK though. He does something called keractetomy. Basically he scrapes the cornea in a deeper way, similar to PTK.. but in the old fashioned way. Did you hear about it? I think he knows what he is doing since he is one of the chief residents in the ear and eye infirmary in NY. But, the quetion is: how many people get good results with this... and who says I will be a lucky one? Please give me your comment on this and let me know how are you doing..
the sibling is quiet...not sure...I need to make a call. I'm on the west coast.
I'm doing well. Really have narrowed my post-op erosion/scratches to a medication I take about 7-10 days a month. I read some other literature on the drug and it says that contact lens wearers may need lubrication. I'm being really good about using my Genteal Gel a lot more during those times and this last time I had no issue.
my doc put me on doxycline together with steroids drops.(by the way, i suggested it to the doc, according also to Mike's treatment. Last resort before surgery. I have blepahritis and it is suggested that it badly affects the tendency of erosions. Let's hope it works! (doc does not want to put the BCL anymore...)