When doctors see that I have damage to certain parts of my eyes, they often assume that it has recently occurred or needs to be checked by a specialist in case it needs immediate treatment. I have been followed periodically by Dr. Trese, a specialist in ROP who practices in Detroit, since 1998. However, I don’t live near Detroit, so I see someone locally to monitor my general condition. One of the more frustrating aspects of my life with ROP has been trying to manage seeing new eye doctors. Since I have a partially detached retina and a good bit of damage from various eye procedures, inflammation, etc, it is difficult for a doctor who is not very familiar with me to determine when I need to be seen by a specialist. I have some cornea damage; and sometimes when I see a new cornea doctor, he is alarmed to see that I have a retinal detachment and thinks I should go off to Detroit ASAP.
The question I ask doctors when I go in is not whether I have a detachment but whether it has changed. I am very cautious when changing eye doctors; and when I go in to see a new one for a first visit, I don’t necessarily want an exam as much as I want to get a sense of how the doctor will interact with me. That doesn’t make the doctor feel much like they have done their job; but it is an exxtremely important aspect of their job in my case. Most of their job will be about explaining to me what they see or don’t see, how it has changed in comparison to last time. A good part of their job will be about patience with me when my eye will not cooperate; and if they cannot manage that then I will go elsewhere. As far as my retina goes, since arranging transport to Detroit is not an easy task and surgery on this eye is precious at this point, my arrangements with Dr. Trese are also very cautious, and new doctors also need to respect these things.
Sometimes Dr. Trese can assess my condition by looking at a scan–without me going to Detroit. At other times the scan is not clear, and I need to make the trip. If I went to Detroit every time a doctor was alarmed about the condition of my eyes, I might as well move there. The truth is that most doctors do not often get a chance to regularly follow people whose eyes are in the condition that mine are in–the people simply stop going to the doctor. I have fallen into that category over the last few years. In 2008, my cornea specialist told me that there was nothing else that could be medically done for my eyes. So I stopped going. The MRI has changed things.
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