I managed to heal from recurrent corneal erosion (RCE) and dry eye, but it seemed to take forever. I do not think it needed to take this long, so I wrote a book to help others get well sooner. Home – RECURRENT CORNEAL EROSION
I believe I didn’t get the understanding and medical support I needed quickly enough. Part of the reason for the delay was the confusion in my (and my doctor’s!) mind between recurrent corneal erosion and dry eye. Although these conditions often go together, they are two different things.
How it began
My RCE started because of dry eyes, which made the surfaces between my eye and eyelid sticky, instead of slippery. This caused the inside of my eyelid to stick onto the front of the eye, ripping away the epithelium, the extremely sensitive top layer of the cornea. This usually happened when I opened my eyes in the morning, so I woke up screaming in pain. When the new ‘skin’ on my cornea healed, it never healed fully and did not re-attach properly. So the same thing happened again and again.
Recurrent Corneal Erosion (RCE) wrecked my life for years. I dreaded going to sleep, knowing I could wake up in horrific pain and be unable to function for days. The impact of severe RCE can be huge. Other patients have told me they even considered taking their own lives because of it.
Getting medical help: the journey down many dead ends
When I went to the eye clinic the doctors said little, apart from saying I had dry eyes. I didn’t realise at the time that many eye doctors don’t have either the interest or expertise in diagnosing and treating RCE. I didn’t know at the time that I needed to see a particular type of eye specialist.
Years went by while I was treated for dry eye: I tried (among other things) punctal plugs, Restasis, twice daily warm compresses with eyelid massage, omega 3 supplements and numerous types of eye lubricants. I used every self-help tip under the sun to prevent my eyes from drying out: sleeping in an eye mask, room humidifiers, moisture chamber goggles, taping my eyes shut at night. But I still kept getting erosions.
After all this the attitude from the eye clinic was: you will just have to learn to live with it.
So I found a private doctor and asked for yet another dry eye treatment: Meibomian gland probing, a method for unblocking the oil glands in the eyelid margin.
Turning the corner
After the new doctor examined my eyes, he told me something that surprised me. He said: ‘Your dry eye is under control. You do not need another treatment for this’. He said that although treating dry eye and using eye lubricants is an important first step in tackling RCE, I needed something more.
He said I needed a treatment specifically to help the epithelium stick down onto the rest of the eye. Completely by luck, I had found the type of eye doctor I needed: a corneal specialist.
He recommended some minor eye surgery, which he told me had a high success rate. He explained that to be successful in preventing recurrence, the surgery needed to be more than just a ‘scrape’ whereby just the epithelium is removed. He said he needed to cut deeper into the cornea to remove the faulty tissue, for example using either a laser or a handheld instrument called a diamond burr. He chose to give me surgery using a laser, PTK (Phototherapeutic Keratectomy) , it worked and have not had a bad erosion since.
Other treatments for RCE apart from surgery
I learned that surgery is not the only option for tackling RCE. I could have been offered:
- Bandage contact lenses. These protect the surface of the eye from the shearing force of the eyelids.
- Saline (salty) drops/ointment. These products work by reducing the swelling of the cornea, making it easier for the epithelium to hold onto the eye. Examples of brand names are Muro 128 in the USA and Alissa in the UK.
- Serum drops. These are eye drops made from your own or donor blood and contain healing proteins which help re-attach the epithelium.
- A course of antibiotics (usually doxycycline) and a steroid drop. These medicines kill the bacteria which produce an enzyme that destroy the structures which keep the epithelium attached.
- Amniotic membrane graft. The membrane which protects babies in the womb contains many healing substances. A small piece of this is placed on the front of the eye either in a ring or under a bandage contact lens. A well-known brand of these is Prokera.
Just to add to the confusion, you may notice that the last two treatments are also used for treating dry eye. But whether or not you have dry eye, the last two treatments are thought to have a specific healing effect for RCE.
After getting where I needed to be.
From talking to other patients, I realised I wasn’t alone in struggling to get effective help for RCE. I decided to put my experience to good use, and with the help of other sufferers and a local corneal specialist, I gathered as much information as I could about the condition. I learned that there is no ‘one size fits all’ method of healing from RCE. Although there are effective treatments, overcoming RCE can be complicated and requires persistence. There are other obstacles on the pathway back to eye health, in addition to the confusion between dry eye and RCE.
By the time I had written down the essential information about RCE, the options for treatment, self-help strategies and how to get the right medical help, there was more than enough to put into a book, which you can find on my website below. I hope it will help other people to find a road to recovery that is shorter than mine.
