RCE has come back!

[ljkq]

Hi again,

I haven't posted in a while, mainly because my RCE's have been well kept under control with Genteal Gel each night. Lately, it's back and I've been having pretty painful erosions, even while using the gel. I'm trying more things, warm compresses before bed, Tranquileyes goggles, but I've been having some kind of bad episode every single night!

It's pretty disheartening when I thought the gel was going to be my solution!

I'm on the waiting list for PTK surgery, which I think I'm going to go ahead with- I'm more desperate for a solution now that I no longer feel like I can control it!

My question is: Is this a degenerative condition? The doctor I saw who seemed to have a really thorough understanding of the condition said something like "Our eyes do get dryer as we age" but this whole thing only started in September (5 months ago).

My other theory is that being February in Canada, our furnace is on full blast most of the time, so that may be the change. I did buy a huge humidifier today, so wish me luck for a better sleep tonight!

[liz56]

Hi,

I'm so sorry to hear this! Genteal Gel does a lot to help, but it might not do enough to keep the epithelium from not "anchoring" to the basement membrane. Since Rebecca's shop is out of Dwelle, you might want to try Muro 128 5% eye drops. They are expensive, but they can help the bond between the basement membrane and the epithelium. I was told to use them first thing in the morning, a drop in each eye, every five minutes for fifteen minutes and then through the day every four hours. They did help, though they are not as comfortable or nice as Dwelle is.

As I understand it, part of the medical controversy about ABMD is the word "dystrophy." Dystrophies are usually progressive, but there is no evidence that this condition necessarily is. Yet, for many doctors, the condition qualifies as a dystrophy, because it is a malfunction of cells.

I wish you the very best of luck with PTK. Please keep us posted on how you do with the surgery. I, for one, want to know from as many people who have it. My condition is so rare and under-represented in medical literature that I count more on other patients than I do doctors at times, because they are more motivated to find out what works.

Take care.

--Liz

[ljkq]

Thanks Liz! I was thinking of you, wondering:

When you replied to my post about PTK surgery you said you were not doing it because you were afraid of it. Do you feel afraid with good reason, or just emotionally afraid?

I'm trying to learn all I can about the surgery, and balancing the negative with the positive is so confusing! Some people are thrilled with the surgery, and others feel it started new problems! The horror of going through eye surgery only to have new problems....!!!

About my reoccurance of erosions, I know I let my daytime routine go. I thought the Genteal gel alone at night was enough (and it was for awhile) but I have to get back on the daytime stuff and try new things. I tried the Muro drops at one point a month or so ago, and they burned going in and I had a minor erosion that night, so I figured they weren't for me. Maybe I should give them another try and stick with it.

Last night I had another erosion after about 6 hours of sleep (it seems my compresses etc. are extending the time before they start at least) so I think I'm going to set an alarm. Two 4 hour stints of sleep with no pain seem like a good prospect again. I'm going to book an appt. to try a bandage contact lens this week.

I'll definitely keep you posted on the surgery. I hope I find a solution to all this soon! Although this latest bout is a bit of a blow, I still feel hopeful about finding a solution.

[liz56]

Hi, ljkq.

The promise of PTK is a strong reason to try it, because it seems to have some good results. Doctors recommend it and report a 90% success rate, and it can be repeated for those difficult 10% of people who have them return.

However, from reading about people who have had the surgery on line and from reading the studies about success rates, I do not see reliable long-term results. The studies I see go out as far as 22 months. From my own experience, I know that my eye injury happened when I was a teenager, and my RCE's began when I was 40 years old. So, I worry about the whole surface of the cornea being affected twenty years out from now.

In addition to that, there is no way to predict how vision will be affected, if ghosting will happen, or better or worse issues with nighttime vision. Some people are fine, and others face vision problems that will never be corrected by glasses or contact lenses.

So, I'm going to plod along with my little drops and all of the other things I do, since it is working. I have just given up on the idea of being able to go back to normal. However, where I am now is so much better than where I was in 2007 that I'll take it.

I hope that whatever you choose to do works well for you!

Best wishes,
Liz

[ljkq]

Ahhh... yeah. There is a lot to consider, especially long term! I'm going to continue to explore new solutions in the meantime... I don't know how long I might be waiting on a surgery date anyway.

Thanks, Liz. I'll keep you posted! I really apppreciate this forum, and those senior members who are able to pass on hope and encouragement. I hope soon I'll become one of those with solutions to share!

--Laura (ljkq)

[2catsonEmerald]

PTK Surgery

I had PTK Surgery last May. I had a really bad erosion 2 months after the surgery and now I'm in the midst of another corneal erosion. I went to the eye doctor last week and he said my eye is healed where they did the PTK surgery, it's just ripping apart around the perimeter. It's been 5 days now and it feels like I have glass in my eye, it's extremely swollen and blood red inside. I can hardly open it to put in the drops and ointment. I HATE THIS. Also, I lost my job of 20 years in November and I actually got called for an interview (in this horrible economy, that's good) at the local hospital for a position the day before the erosion The interview went really well, and I'm supposed to "shadow" the person doing this job on Wednesday. I don't think my eye will be better by then, so I'll probably lose this job opportunity, which really makes me mad. I really need this job, and now my stupid eye has to act up. Very depressing!!! I hope your PTK goes okay, ljkq!! I thought PTK was going to cure me, but so far, the erosions I get are worse than before!! And even after the surgery, I have to put ointment in every night for the rest of my life.

[liz56]

Hi, Doris.

I'm so sorry to hear this outcome. It is interesting how the surgery works where it was administered. Did your doctor say if anything can be done on the periphery where the problems are now?

Best of luck on the job front. The one thing about RCE's, for me, anyway, was that no one had any idea that there was something wrong. I, of course, had pain, blurred vision, and was sickened by a lack of sleep, but to everyone else, it was not noticed. It's one of the reasons many of us suffer for so long and suffer more from people not understanding.

I hope that things improve for you!

--Liz