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End of the road for my corneal disease. Can anyone help?

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  • End of the road for my corneal disease. Can anyone help?

    Hello everyone,

    This is my first post here, although I have read through threads over the last few years. I'll try and be brief in explaining my history with corneal disease.

    I'm 42 years of age, and female. I've had dry eye for as long as I can recall, with it formally diagnosed in my early 30's. In my late 30's I was diagnosed with epithelial basement membrane dystrophy with recurrent corneal erosions. From about age 38 to 4, I suffered 2-3 mild moderate erosions, per night, per eye, and thought that was normal for my condition. Last October my right eye stopped being a nuisance but my left eye decided to get serious. I awoke with the mother of all erosions and had a following debridement procedure. The ophthalmologist at the time was kind enough to let me recover the procedure with no bandage contact lens. That was fun (said dripping in sarcasm).

    Two weeks later I had another massive erosion and lost half my cornea. Again another debridement with no lens during recovery. I was loving life. 4 weeks later the same again except this time I went to the Eye and Ear hospital in Melbourne. These guys were great, they debrided the eye and put in a bandage contact lens for recovery and although the pain was still pretty high, it was bearable. They also booked me in for PTK surgery which they told me was my best hope.

    I had PTK March 2nd, and then had the bandage contact lens removed March 15th. The corneal doctor told me my eye had healed and looked great. I did point out to him that I was still having minor "pulls" but he didn't seem worried. March 20th I had what I called a moderate erosion. Whilst I was devastated at the time I quickly got over my fear and recalled that I was told ongoing erosions could still happen but they would be less frequent and severe. Mine was moderate and not severe, I could live with that.

    17th April, and just over 1 month since they removed my lens I had the worst erosion of my life. I again attended the Eye and Ear hospital and again was told I'd lost most of my cornea and that the surgery had failed. Again they debrided the eye, and sent me off with a bandage contact lens in place.

    I had my follow up yesterday was told I have two options; option 1 another round of PTK (doctor 1 was not hopeful, doctor 2 was semi-hopeful), option 2 attempt alcohol delimitation. I was told if both these attempts fail they have no more options for me and I will need to live with this condition. I asked about wearing BCL permanently but was given no real answer about how long this was possible.

    Does anyone have any light to shed on what I can do? I've just finished a Masters and commenced a new career this year to coincide my youngest going to school. Although work is supportive (I work in a medical clinic), I know they can't keep me on if this continues.

    To say I am fed up is an understatement, and I know people here will understand.