Finding a doctor you can trust AND LIKE is rarely an easy task. Throw in a rare eye disease involving two different complications - glaucoma and corneal edema - and now you must find TWO doctors/specialists who know something about ICE , who are willing to treat you, who you can trust AND who you like. This can be a daunting task. Fortunate for me, I feel like I can finally say "task complete".
Trust me, it hasn't always been this way. I was blessed to have an optometrist back in 2000 notice "high pressure" in one eye and refer me to an ophthalmologist with glaucoma as a specialty. Thankfully, she diagnosed me with ICE right away. I have read that many times this can go undiagnosed for years so I am very fortunate. Although my optometrist at the time caught the symptom, it was clear later that he wasn't excited about having a 'rare eye disease ' optometry patient. My initial ophthalmologist was able to manage the high pressure with drops - she was nice, but I had little confidence that she could go the distance with me and my condition.
Bless my husband who researched and found one of the best and most well-respected glaucoma doctors in Kansas City and the midwest. After meeting him, I "hired" him and he's been my doc for the past 10 years. I've seen him at least once every 3-4 months and have had seven surgeries with him. I so remember the look of concern and his considerate swift action when my pressure shot up so high once that I thought the right side of my head was going to erupt. I trust him. Although he is extremely busy, he is always pleasant, takes time with me. I like him.
Finding the right cornea doctor wasn't so easy. My cornea issues really didn't start getting critical until about 18 months ago. I was referred to a cornea specialist by my glaucoma doc. From that initial appointment, I just didn't like that doctor - he was full of himself, he was condescending, he didn't need a complex case. I should have gone with my gut - and fired him right there - but I waited the three months for surgery and didn't bother getting another opinion. Surgery was a disaster...he complained - along with exasperated sighs - the entire time ("hello, I'm awake down here") about all the scar tissue, about having to trim the tubes to make room for the transplant, how he couldn't get the transplant squeezed in, how the transplant was probably damaged, on and on. During surgery, I was so tempted to call a time-out and end it right there. As he left the surgery room, he told the nurse that this DSAEK procedure "wasn't for the faint of heart" ("hello, I'm still awake over here!"). He complained to my husband "she made me work" ("hello, you're a doctor"). Hey, I'm a realist, I don't demand perfect outcomes - I know I'm a challenging case - but I do demand respect. After continued post-op disrespect and lack of concern by this doctor and most of his staff, I fired him.
When the time came to see a cornea specialist again, I asked for another referral. This time I got a winner. He is so respectful - not just of me - but I see how he treats the staff and his other patients. I trust him. He likes a challenge, he is human, he communicates with my glaucoma specialist. When I meet with him, I feel like I'm talking to a friend or family member. We may not have gotten the ideal outcome from this latest DSAEK, but at this point it is manageable. We have an idea and a basic plan of what may lie ahead. He is most definitely hired as my cornea specialist and as my general eye care doctor. His staff is wonderful too.
Miracle of miracles, just a couple of months after my initial consultation with my cornea specialist, his sister (also an ophthalmologist) began working in a fellowship program with my glaucoma specialist. She is just as nice and caring as her big brother.
I am blessed and thankful for having such great doctors to treat me and my symptoms of ICE Syndrome. If you live in the Kansas City or midwest area and have been diagnosed with ICE - or just glaucoma - or just cornea issues, please feel free to send me an email. I'd be pleased to recommend my doctors to you.
Have a joyous day!
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