experience with surgery for RCE?

[ljkq]

After self-diagnosing as RCE I finally got to a doctor who specializes in dry eye, and she agreed with my diagnosis. I was kind of surprised she jumped right to talking about surgery, although I came to understand that that was the one route to "cure" as opposed to just coping with it with drops, gluing my eye shut at night with Genteal etc. She said if I wanted to, I could conitnue on like this, and we could experiment with a bandage contact lens, or better ways of coping, but suggested I at least talk to the surgeon about laser surgery.

I wasn't even thinking of surgery as an option, thinking it was an extreme last resort, but now I'm warming up to the idea.

She said I have fingerprint dystrophy, but have a good amount of tears, so she thinks I would be a good candidate for surgery.

I'm be grateful for anyone who could share their experiences of laser surgery for RCE.

Thanks so much!

[liz56]

Hi, lkq.

I have not had surgery myself. I am afraid of it, and am grateful to the first corneal specialist whom I saw who chose not to do a debridement and to try and let the cornea heal naturally. I, too, have map-dot-fingerprint dystrophy, and I feel like it is a struggle just to keep the spots on my eye that are prone to erosions stable. Going further with trying to smooth out the entire corneal surface seems like a lot to me. However, I have heard good things about PTK for our problem. So, maybe someone will chime in with their experiences.

This person's account of her PRK on another discussion board is pretty detailed, if you are interested in anecdotal information.

Best wishes,
Liz

[2catsonEmerald]

I had PTK

I had PTK surgery in May for my corneal erosion. I was doing great for 2 months, then I woke up one morning and felt like I had razor blades in my eyes. It was horrible. I missed 2 weeks of work and after going to the eye doctor every day and trying various drops, they ended up putting a patch on it for 4 days. Well, that healed finally, but since then, I have to make sure I put drops in every 2 hours and ointment every night. I still have minor episodes where I can feel that I ripped my eye (usually on one side of my eye or the other, not all over like it used to be), but it goes away in a couple of hours. Before the PTK, it would get worse as the day went on and last for days, weeks, even months. Now, after a few hours it goes away. But I thought I would not have to use ointment anymore, but I have to make sure I use Muro 128 or Refresh PM or Genteel Gel EVERY night! The PTK surgery made my eyes dryer. So good news, bad news. Good luck to you!

[Nimmykins]

On Wednesday I was debrided and had anterior stromal puncture.
It's not healing as well as the doctor wanted, but I'm hopeful for the long term.

[2catsonEmerald]

Good Luck!

Good luck to you - hope it works! I'm sure it's not pleasant now, but hopefully in the long run it will help you! Take care!

[liz56]

It is probably too early to tell if it is working, but I (too) hope that the long term effect is good.

Also, thank you for the detailed post on your blog.

May I ask how your vision is?

Thanks,
Liz

[2catsonEmerald]

Hi Liz, well like my blog says above, besides having to put ointment in every night which seems to work most of the time, my vision is ok, except I have a tiny blurry spot in the eye that they did the PTK. But right after I had the surgery, my vision was 20/75 and when I went back for a follow up 2 weeks ago, it was 20/25, so it is improving. But the blurry spot is still there and mostly seems to bother me when I'm driving, mostly I don't notice it. It's been 8 months since the surgery, so hopefully that will clear up - I don't know! Thanks for asking! Doris

[2catsonEmerald]

Spoke Too Soon!

Well, I guess I spoke too soon. I'm in the midst of another corneal erosion. This is the second really bad one since I had the PTK surgery in May. 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 stuipd eye has to act up. Very depressing!!!

[2catsonEmerald]

Another erosion!

Well, I am just getting over another erosion - I went 7 months and everything was fine and then BAM! woke up in extreme pain. Now my vision is more blurry than every. My corneal specialist says there is nothing else he can do for me, so I went and got another opinion and I think this new doctor is going to do the puncture thing on my eye. Don't know what to do anymore, but I can't deal with this pain all the time!!

[nycdryeyegirl]

Well, I am just getting over another erosion - I went 7 months and everything was fine and then BAM! woke up in extreme pain. Now my vision is more blurry than every. My corneal specialist says there is nothing else he can do for me, so I went and got another opinion and I think this new doctor is going to do the puncture thing on my eye. Don't know what to do anymore, but I can't deal with this pain all the time!!

Hi,

Have you considered going to the Cleveland Clinic Cole Eye Institute? Perhaps one of their corneal specialists would be of some help for you in lessening the pain you are experiencing.

Here's a link to a thread posted on DEZ about a member's experience with the Cleveland Clinic:


http://www.dryeyezone.com/talk/showthread.php?t=7949


I hope you find this info helpful.

Pam

[liz56]

Hi, 2catsonEmerald.

I'm sorry that you are still having erosions and that they have worsened.

It's generous of you to share your experience. I've been curious about that issue for a long time, because, like many other people, I would love to stop hassling with drops all day, sleeping with gallons of goop and goggles, and living with the fear of erosions. The promise of surgery sounds so tempting, and it is something that I considered and looked into but could never bring myself to do.

I hope that this cycle of erosions ends soon for you.

--Liz

[2catsonEmerald]

More treatments

Well, I would look into the Cleveland Clinc, but I got laid off last November and have been on severence for 1 year and that is about to run out in November, so I wouldn't have time to do that before my insurance runs out. So this new doctor is the only hope I have for right now. Hope it works! Thanks eeveryone!

[coach14]

I have map dot fingerprint dystrophy causing recurrent corneal erosions. Had it for at least a decade. Mentioned it to every doctor I went to -- Primary care, optometrist, ophthalmologist. No one even could diagnosis it correctly, until I stumbled into a corneal specialist who diagnosed it in about 5 seconds.

Tried punctal plugs and Muro 128 which helped with pain symptoms, but double vision in one eye kept getting worse. What really fixed it was superficial keratectomy in that eye. It was a 20 minute procedure with easy recovery.

Everyone's experience is different but this worked for me.

[2catsonEmerald]

Thanks Coach14 - going to the eye doctor today to get the strombal puncture. I will mentioon the superficial keratectomy to him!

[2catsonEmerald]

Strombal Puncture

Well, I had the strombal puncture done today. Took the doctor only about 1 minute, put about 20 holes in my eye. Didn't hurt at the time, but when I got home, felt like glass in my eye!! OMG! Putting Muro ointment in helps and just keeping my eye shut now. He said it will hurt for a couple of days, and then it should start feeling better. I sure hope this works. Right now it feels like a horrible erosion. I asked the doctor about superficial keratectomy, but found out that is just scraping the eye, and I had that done at the same time they did the PTK surgery 1-1/2 years ago. So I'm praying this will end my erosions and so is the doctor. He really seems concerned and like he wants to help me get rid of this. So I'll keep you posted....