My son hates going to the ophthalmologist every year. After seeing what he endures at each visit, I don't blame him. It's not much fun for me either. Let me take you through a day at the ophthalmologist for someone with a retinal degenerative disease.
First, understand, that we see the top research doctor in Jacksonville from UF Department of Ophthalmology . He is wonderful. The problem is, he works at a research hospital that also serves the city's uninsured, indigent, and prison population. Needless to say, when we get there, anything can happen, including a man in an orange jump suit with shackles waiting with us. By the way, the man in the shackles seems to get to go ahead of us in line.
Our doctor has tried to make it easier by making sure we come on his "research" day. So, we avoid a lot of the craziness. However, the wait is usually incredibly hard to deal with. We deal with it though, because we know it's the only way to get the best care and the latest greatest information on my son's disease.
Once we are finally seen, the tests begin. Usually, at first, it's just a basic eye exam and an acuity test. The news never gets any better here. They ask my son, can you see the first line? "Yes. It's an E. Can you see the second line? "Yes. It's L S A." I look at what he's seeing and he usually gets about two of the three letters right. My heart sinks. I'm used to this though. While I keep hoping by some crazy miracle, all of a sudden, he'll see just fine, he still doesn't. So, time to tough it up and get ready for the rest of the day.
Next comes my son's favorite part (sarcasm). The numbing eye drops and the dilation. At least before while he was waiting, he could play on his iPad or text his friends. Now, that is out of the question. Instead, he sits with his eyes closed because the light hurts.
We get called in for the next test. Now, I may get these tests out of order. There are so many. Sometimes I forget which comes first.
The basic eye exam consists of the ophthalmologist and his interns using specific instruments and lights to look through the front of the eye to see the retina (the back of the eye). The doctor luckily never sees serious changes to my son's retina through this exam but he does use it as a teaching instrument for his students. At least one student will have to play "guess the disease." At least this part is sort of fun because my son usually stumps the interns. They can't figure it out. Although the lights and multiple exams can be somewhat frustrating. We will do it though, if it means we can raise awareness and find a cure and help others too.
The next exam is the OCT (Optical Coherence Tomography). It uses a very thin laser beam to measure the thickness of different layers of cells in the retina. My son has a very hard time keeping his eyes focused for this exam so it usually takes many tries to get the results correct. I understand this is a problem with many people who have these retinal degenerations.
An OCT of a normal retina will look like the picture to the left. There should always be a dip in the middle (I'm sure there's a better medical description than I'm giving it) and the layers should appear attached to each other
My son's retina looks more like this picture to your left.
Then, there's the visual field test. The visual field test is something that my son will have a place to rest his chin and look into a half globe looking device (see my medical knowledge is so awesome!). Once he rests his chin, the lights go out and the technician maps his visual field by using a laser light throughout the globe. When my son sees the light, he presses a button. As a mother watching, I see every time the technician shines the light and I watch how often my son does not press the button.
The visual field test machine looks like the machine on your left.
These are the results you might see from the visual field test showing entire sections where the vision is missing. This isn't my son's exact picture but it looks pretty similar.
Another common exam is the ERG (Electroretinogram). To date, my son hasn't had to take this exam because genetic testing has proven what his disease is without needing the ERG. We were fortunate that we were able to participate in a free genetic testing program for retinoschisis. However, many people with retinal degenerative diseases don't have that fortune so they must endure the ERG. My son will need to also endure it if we are to participate in an upcoming clinical study for his disease, but I will think about that later. Just take a look at the picture below and tell me if you would want your child to have to deal with this!
The ERG measures electrical activity in the eye. A contact lens is placed on the eye. Lights of different colors and strengths will then be flashed on a screen in front of you.
Sounds fun, right?
All in all, these tests can take at least 4 hours. Never mind the waiting time between each test. When it's all over, there's no way to even think you can accomplish anything else for the day. These tests are mentally and physically draining on both the patient and the parent. Luckily, my son only has to deal with them once a year. Others, whose diseases are less stable, deal with them twice a year. I can't even imagine.
We go to the ophthalmologist next Monday for my son's annual visit. Please send your prayers. And, yes, if you want to help END THIS MISERY for my son and millions of others, please consider contributing to MOMS for Sight to help fight research: DONATE