Okay, well, I went to see the cornea specialist in March. He said I have ulcers (open sores) on both my corneas and the nerves that supply nourishment and sensation to my eyes are damaged. He said a person without diabetes would be in extreme pain with the ulcers I have. He told me no makeup, and to limit my reading, computer work and watching TV. He told me to close and rest my eyes as often as possible and he put me on a very strict eye drop schedule to keep my eyes moist. One of the major contributors to these ulcers is extremely dry eyes. I was to take "tears" WITHOUT preservatives 8 times a day, an eye gel 4 times a day and a prescription Bacitracin ointment for eyes twice a day.
I went back after two weeks of following this regimen religiously. He said the ulcers were healing but not to the extent that he had hoped. He recommended adding serum drops to the regimen 6 times a day, in addition to the drops I was already using. The serum drops are still considered "experimental" and are not covered by insurance. They are made by taking several vials of my own blood, spinning it down and then an apothecary (specialized pharmacy) makes eye drops out of that serum. It contains the growth hormone that is not being sent to my corneas due to the nerve damage.
So - after three weeks of this therapy, along with the other drops as well, I returned to his office once more. He said the corneas look better, but still have linear ulcers and scarring, making my vision cloudy. He recommended a surgery called a tarsorrhaphy and referred me to a special optical plastic surgeon who works out of the same office building. At this point, all I knew was that the surgery involved sewing my eyes together partially, allowing the corneas to stay moist, limiting exposure to air, wind, dust, etc. In most cases, this surgery is done temporarily to allow corneas to heal after an injury or similar reason. But, in my case, it would be a permanent transition. It would be a preventive measure to keep more ulcers from forming by limiting the exposure the corneas have to outside elements.
Needless to say, I was not happy about this news! I was very upset and did a lot of praying and sharing with my family. Ultimately, I had decided not to have the surgery - that there must be other options! But I decided to go ahead and go to the consultation with the plastic surgeon to see what his plan was.
He showed me a diagram and added his own sketches to show me how my eyes would change. The plan was very extensive - more than just sewing the corners of the eyes. He plans to do some maneuvering of the tendons and muscles in the lower lids, as well as pinch the inner corners and the outer corners of the eyes. He spent two hours with us (Mom and me) and could tell that we were very concerned about the results and how this would change my appearance. He was very thorough in his explanation and answered all of our questions.
After leaving his office, I actually felt a little better about the surgery, but still wanted to explore other options, so I didn't schedule it at that time.
A friend of Mom and Dad's told her about a friend of his who is a world-known cornea specialist who has done miraculous things with cornea transplants and other treatments. Mom was able to schedule an appointment with him for just a week later!
Wow! Maybe there IS another option! I started getting my hopes up that I might not have to have this surgery after all!
I saw this doctor for a second opinion last Thursday. After a very thorough eye exam, seeing several different doctors in the office - 3 1/2 hours later - this doctor informed me that he agrees with my specialist - that there really is no other way to remedy the problem. A cornea transplant would not work because, due to the nerve damage, the same thing would happen to the new corneas, maybe even worse. There are special "contact" lenses that cover the entire eye, but again, due to the loss of sensation, the risk of infection is far too great. The only way to ensure prevention of more ulcers is to do the surgery. And even then, there's no guarantee. But the surgery would increase my defenses greatly.
So - Friday morning, I called my plastic surgeon and scheduled the surgery on my left eye.It is set for Thursday, August 4, 2011 at noon.
He will do one eye at a time. We decided to do the "good" eye first - the left one. The right one still has the cataract, so the vision isn't good at all in that eye. After seven to ten days, he'll remove the stitch that keeps my eyelids closed, and approximately 4 or 5 days after that, we'll schedule the right eye to be done.
Everyone I've talked to has been super supportive, especially my husband Thad, my son Hunter and my parents! Of course, Thad's family is also very helpful. They are always there when I need them and I know I've been in their prayers.
Well, I'll leave it at that for now. Thad and Mom are going to help me keep the blog updated after surgery. I plan to add pictures also. I thought others might like to see my progress, but the main reason for all this is to help others who might be facing the same or similar decisions. I had tried to research this subject online before making my decision, and truthfully, there's not much out there - at least not with all these factors - diabetes, neurotrophic keratitis, active ulcers, and cataracts. My hope is that maybe someone else might be able to benefit from the knowledge of my experience and that my entries here might offer some encouragement and support in their decision-making.
God bless you all!
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