new to the group - with RCE

[june2727]

Hi

I have been battling RCE for several years now...

The first big episode was about 5 years ago. It was one of the most painful things that I had experienced. My eyes were really dry when I had gone to bed after taking out my contacts. When I woke up, the pain was terrible. It took a week before I could return to work...

Two and half years went by and I had another big episode. This one was even worse than the first, but also resulted in a full week out of work. The doctor diagnosed it as RCE so I eagerly went online after I had recovered to learn more. After reading the accounts of others, I was thoroughly depressed. I realized that I had been having small erosions for a long time, but just didn't realize what they were. The first few month after this occurrance were terrible. I started putting drops in every hour on the hour...and still had painful eyes often. Sometimes the pain could be attributed to something (like a single beer the night before), and other times there was no ryhme or reason to it. At this point in time, I was keeping track of the small episodes in a calendar - it was happening at least once a week (sometime more), and occurred in both eyes (though one more prevelant than the other). I started sleeping with a humidifier every night in the dry months, putting ointment in both eyes each night year round, avoiding situations that would dehydrate me (drinking - even a single beer, smoky rooms, skiing, exercise that was dehydrating), and using drops on a frequent basis. I even started taking Omega-3's and flaxseed oil on a daily basis - I was willing to try anything that would help avoid going through this again.

My eyes seemed to stabilize after all of this. Until.....2 months ago I had another recurrence out of the blue. I thought I was just suffering from allergy eyes. Then it seemed to get worse, and I went to the doc thinking it had turned into an eye infection. Again, I was out of work for almost a week - I am seeing a trend here. This week my eyes were feeling very dry so I went back to the eye doc with the thought of preventing another episode. Unfortunately, I was too late - they discovered another small erosion.

When I asked my doctor what else I could do to prevent this from happening again, she suggested that I see the doctor in the office that specializes in cornea issues and does corneal surgeries. Before making an appointment, I wanted to do a little research to understand what options are out there, and also educate myself so I can ask the right questions. Can anyone provide any info/suggested reading? Has anyone had surgery for RCE, and was it successful. Also, how can I make sure I have a good corneal doctor?

[Tempestuous]

Hi J,

I'm also an RCE sufferer.
So I dont repeat myself it may be worthwhile reading my experiences here...

http://www.dryeyezone.com/talk/showthread.php?t=9813&

Definitely seek a corneal specialist.
Google is your friend - especially with the academic search facility. But in order to get good results you need to know the right search strings for your eyes. For instance do you have an underlying epithelial basement membrane dystrophy? And if so, which specific type?
Have you done a Schirmer's test to see how dry your eyes are?

A good doctor imho will be able to tell you exactly what conditions affect your eyes to allow you to then do your research on them for a range of possible treatments to discuss with your specialists and for him to decide if they are suitable for your particular eyes.
You dont want some yes man who will just do whatever you say, nor someone who just gives you a single fixed standard medicine and wont explore other options.

Everyones eyes are different and it can take time to get the 'optimal' balance for your eyes. A balance which itself changes over time.

General tips...
- stay away from preservatives.
- continue your diary and record things such as alcohol, exposure to central heating/ air con, supplements, etc, and learn your triggers.
- When exposed to central heating/air con (or driving) wear glasses that seal your eyes (moisture chambers) and keep your eyes lubricated regularly.
- When exercising outdoors wear moisture chambers to protect from air flow.

I've not had surgery though have an appointment with another specialist with an excimer laser for a consultation.

Ok well thats all I can think of off the top of my head. Any questions, feel free to pm me. I'll have to update that thread with a summary of the last few months treatments and discoveries.

Good luck

[june2727]

Thank you for your response. Sounds like you have had a tougher go at this than I have. For the past 2 years, my eyes have been doing great - now 2 episodes that are big enough to make me miss work have happened in 6 or 8 weeks. I am hoping to be back at work on Monday this time though...

Unfortunately, I know very little about what is going on medically. My regular eye doctor has been, how shall I say, 'less than pro-active'. I do know that that the big erosions have all been in one eye, and they tell me they are all around one location - even though to me it feels like it has been moving around. Since I am not thrilled with my current eye doc office, I was thinking that it is worth looking around to find a good cornea specialist in my area - we only have one pair of eyes and I want to make sure I am dealing with someone I can trust...any ideas of what I should be searching for?

When I had my last big episode 2+ years ago, I was keeping thing written down. I even wrote down when one eye hurt in the localized spot that I associated with this 'thing'. Then it got better, and I could have a few drinks and not worry about being extremely careful to alternate beer/water to make sure I didn't dehydrate. I also recognized what I called 'warning signs' of my eyes getting too dry and needing lubrication - usually this was when the localized spots hurt. I thought that I had everything under control with the humidifier, genteal ointment at night, and fish oil/flaxseed oil daily. Nothing like a big erosion to bring you back to reality...

I would be happy to try something other than surgery - I just don't know what the different options are. I have heard of debridement, but don't know much about it. I would guess that some of the treatments are used for different causes of RCE - still so much to learn...

[Tempestuous]

If you are like myself - pro-active and willing to read all the clinical data you can to get the facts and take an active role in your recovery then I'd suggest the following in trying to find a good doctor.

1 - go to any corneal specialist and get a get a diagnosis of everything affecting you. Is it just RCE? Is there also dry eye?mgd? ebmd? can they do a schrimer test? Anything else they can do to help identify and quantify your current state to record your progress against?

2 - take notes and that will form the basis of your research

3 - take whatever medicine he gives you. You should typically go in for a follow up after about 4 weeks which is usually adequate time to see under the microscope if your perceived relief or otherwise of your symptoms matches to what he sees under the microscope.

4 - When you go for your follow up, if your eyes are no better and he just wants to give you the same medicine and tells you nothing can be done then find a new doctor.
On the other hand he gives you an alternative medicine to try and works with you on your research to which meds will work and which wont for your specific eyes AND tells you which surgical procedures may help and which will not for your eyes, then in my experience he would be a decent enough specialist.

Unfortunately, this is a condition which cant be cured - only managed. But there are things you can do to help significantly.

Personally I'd rather exhaust all non-invasive procedures before risking ones which may damage my eyesight. But by the sound of things you need to identify the source of your problems before you can seek out possible treatment options.

[liz56]

Hi, June 2727.

I am a fellow sufferer of RCEs, and I am sorry that you are experiencing another cycle. It's been over two years since I had a terrible time with them, occurring a few times each week with some gaps of two or three weeks at at time of being erosion free. This pattern went on for a year.

I have never had surgery for it, and I do a lot to try and avoid surgery.

My problem may be different from yours, because I have a corneal dystrophy, called EBMD (epithelial membrane dystrophy) or map-dot-fingerprint dystrophy. That is what causes my erosions.

These days, I sleep with Tranquileyes goggles, use Dwelle eye drops (made for RCE, caused by EBMD, as the drops draw the moisture out of the basement membrane and help to make it a smooth surface) every four hours, use Genteal Gel at night, and try to stay hydrated and do other diet-related things to help.

I kept a blog that traces my year of serious, stubborn erosions:

http://www.dryeyezone.com/talk/blog.php?u=1819

Like you, I kept a spreadsheet of when they happened and what I was doing at the time, which is posted on that blog as well.

This information may or may not be of help, since my problem comes from a very specific cause-- combination corneal injury in my youth+severe dry eye syndrome+EBMD. So, if I say things that don't apply in your case, just ignore them. I figure it is better to post more, so people can pick and choose.

I hope that you find a resolution soon!

Best wishes to you,
Liz

[june2727]

liz - thanks for the pointer to your blog. now that my eye is on the mend, i am able to sit here with my 'pirate patch' and spend a little time on the computer. i seem to have skipped past the 'small' erosions these days and straight to the 'out of commission for many days' variety.

after reading your blog and other posts here i am feeling empowered to take control of my destiny. when i had my big episode 2+ years ago, i did a lot of reading, and made many changes (humidifier, genteal, fish oil - i figured i'd try anything). after that, it seemed like things were' under control' or 'in remission' - but not anymore.

i have also determined that my eye doctor is not familiar with this kind of problem and is not advocating for me like i would like my doctor to (i don't think i have ever been asked to come in for a follow-on to see how it is healing). so my search for a new eye doctor is underway...and maybe then i can learn more about what is causing this problem and hopefully determine a better way of managing it.

[liz56]

Hi, June2727.

Finding a doctor can be so hard. I visited many, and I also traveled out of state to find one who worked with a lot of RCE patients. I highly recommend trying to find someone who has heard of Dr. Holly or Dr. Foulks or at the very least expressed that he or she has seen a lot of RCE cases. It has to be someone who is in it for the long term with you. It can take a long time to heal, even though you do everything by the book, each day. I had many, many frustrations, and the process took much longer than I thought it would.

However, there is getting through it and learning to live with and adapt to it, and I wish you the very best!

--Liz

[cebeth]

June 2727,

Hello. I have corneal erosion, too. I accidently poked myself in the eye in 6/09and started with the erosions 2 weeks later. I have tried lots of drops and ointments and nothing worked. I had anterior stromal puncture which didn't help. Then saw a corneal specialist at Wills Eye and first tried Doxycycline. It didn't help and then had Diamond burr procedure-only worked for 3 weeks. Tried bandage contact lens-didn't help and had PTK laser done. Only worked for 1 week. I have worn a bandage contact lens now for 10 months, changing it monthly. I use Optive drops every 2 hrs. I still have erosions. I wish I had looked online more and tried some other things before having all of these surgeries. I can go maybe a month at times, but then still have erosions, bad ones even with the BCL. Try to research everything and remember that the surgeries are not a 100% cure. Good luck.
Beth

[Lucy]

Surgeries are not a definite cure. I've had the diamond burr also.

In a word, try Muro 128 OINTMENT. Not the drops. Use Muro 128 ointment at night before bed and if you wake up during the night. You may need to use artificial tears during the day also. My dr told me I can use Muro oint as long as I need to. If your dr tells you otherwise, do what he says.

You can find Muro 128 at US drug stores. Perhaps not every one, but most have it. You may ask as some keep it behind the pharmacy counter.
Lucy