One of a Kind

While visiting with my eye doctor on Monday I learned something new. I learned that my doctor, who is one of the best specialists in the state, has no other patients like myself. While discussing treatment options (the lack thereof) he indicated that he had a few Styklers patients (Styklers syndrome is the condition that affected my eyes.) and had treated hundreds of patients with macular edema, (The condition that is currently causing my remaining vision to deteriorate.) he has never treated anyone with both problems. This means he has nothing to compare treatments too. The situation is further complicated by his inability to take an accurate picture of my retina. (Since the central part of my vision is messed up, I cannot focus on the “crosshairs” while looking into the machine that photographs my retina.) The bottom line is that the one possible treatment, not covered by my insurance, probably would not suppress the fluid leaking underneath my retina and definitely would not reverse the damage already done. He advised us to go home and discuss our options. I didn’t bother scheduling a return appointment. The upside is that I asked my doctor to send me some pictures of my retina taken during my previous visit. He has to print and mail them to me. He can’t just email them because of HIPA. I will post them on the blog when I get them.