Eye Exam - Second Opinion

We had our appointment at Johns Hopkins Wilmer Eye Institute for a second opinion on Lucas’ eyes. I really liked both the doctor and his assistant that took a lot of time going through Lucas' background and watching his visual behavior. Even though I feel like our doctor at Children’s is very knowledgeable, I felt that the guys we met at Johns Hopkins go a step further in understanding the neurological aspects of his vision. That has always been the challenge with CVI and ophthalmologists… they are trained to work with the health and condition of the eyes, not the neurological aspects that are sometimes unknown (there’s just no standard answer as to how the brain will behave and is able to repair).


As suspected, he had a vastly different opinion from our other ophthalmologist which made me feel like we did the right thing in seeking out another opinion, but I didn’t expect it to be polar opposite. Our doctor at Children’s wants us patching two hours a day and wants to do eye muscle surgery right away on the left eye. (The reason for the 2nd opinion is that I don’t agree that it’s the left eye, I think it’s the right eye that is weaker. Lucas is obviously using both—but one at a time—so is patching the right thing?) The Johns Hopkins doctor said absolutely no patching… said it will either not help at all, or it will cause harm to the one you are taking away. He said the only way patching would help him is if we alternated and patched both eyes… but added that he wouldn’t advise spending the time to do, because even that may not help him.

He agreed with me on the dilemma of the right versus left… it isn’t clear that the left is the issue, and he is in fact using both eyes, back and forth. He gave me a little bit of hope that they may function together one day (that will be up to the brain repair, so who knows)…. The Children's doctor said definitively that the eyes would never work together.

Lucas’ issue is not only that he switches his eyes back and forth but that his pupils are too far apart (wall-eyes, aka strabismus, caused by a lack of coordation between the eyes). https://www.google.com/health/ref/graphic/1125 But seeing this depends on which eye he is using... if he's using the left eye, the other one floats, drops, or turns inward. When he's using the right, you can see that the eyes are turned outward. This is where we question “is it the right or the left that we need to repair?” The doctor is interested in seeing the latest MRI report so he can make a better assessment as to the reason for his behavior. He said it is common for kids that have a significant portion of the brain missing to have their eyes in this wide position. He said he sees it all the time with kids that have had part of their brain removed for seizures, and thinks this is why Lucas is appearing this way. He added that this is actually due to adapting to visual fields and how the brain has learned to accommodate.

Quick history on his visual fields… when Lucas finally started showing a visual response in early 2008, it started on the left side only. There was very little response to an object placed straight on, and absolutely no response on the right side. So, we played only to that side by offering objects on the left side to stimulate his vision. Eventually over several months, he was able to see things directly in front of him...the brain made new connections. Now today, he can finally recognize things on the right, meaning the right visual field is also improving, however, he definitely still prefers the left side because this field is much stronger (this is why you see so many pictures of his eyes looking to the left…this is where he can see best, and also the way he controls the nystagmus, the constant movement of his pupils back and forth. If he parks them to the left, the movement stops). Although the shaking is still present, it has also improved over time. This is why I hold out a lot of hope for things to keep improving on their own. *I should also note, the reason you don't usually see his pupils misaligned in pictures, is because I usually don't post these. For every picture we get with Lucas looking straight on or stable to the side, there are probably ten more pictures taken at the same time where his eyes are not aligned.

In summary, the doctor does NOT want to do surgery. He feels based on Lucas’ eye behavior, if we do it now, we’ll have to go back and repair it several more times. He also feels that if we adjust the muscle to bring one of the eyes inward, we could end up taking away some of his ability to see from that visual field. He said we may end up doing it at one point, in a few years, but its too soon to tell. Although there’s nothing more beautiful than when he's able to look at you with his eyes aligned for a few seconds and I'm eager for them to fix them, I am happy to be dodging a surgery for now.

Another encouraging thing that was very different than our other doctor’s assessment in regards to his optic nerve damage. We’ve known since the first eye appointment in the NICU that this primary nerve for visual transmission was damaged, and earlier this year we were told that it had been further damaged from all the fluid pressure that lingered for months in 2008 (with a very pessimistic outlook from that doctor). The Johns Hopkins doctor wasn’t concerned, he said the optic nerve can sustain quite a bit of damage and still produce functional eyesight. If its severed – then sight is lost and irrepairable. But he said Lucas’ damage is moderate, and that he's happy with where it is, its not so severe that it is a concern for him at this time.
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He also said he doesn’t see Lucas needing glasses in any capacity right now, that kids with CVI tend to be near sighted and that is working to Lucas’ advantage right now. That was good news, I guess I’m expecting Lucas to need them at some point… its one less thing to worry about for now.
All-in-all it was a very good appointment and I’m glad we went. He wants to see him again in six months, with an MRI report. I have to admit that I’m a little worried about doing nothing and that the opinions are so different, we ultimately want Lucas’ eyes to be straight… and I honestly don’t know which doctor has the right answer as it pertains to muscle surgery. But, we’re going to run with the Johns Hopkins opinion for now and wait six months. They really seemed to bring a broader understanding of the neurological reasons for his vision challenges. We also see Dr. Roman in Pittsburgh again in October, and very much looking forward to that.

Catching up on pictures... here are a few from my Brother and Sister-in-law in town a few weeks ago. He's such a ham, now when you tell him to smile for the camera, he does.

Little king on his throne

(at the new W Hotel overlooking the White House in DC, prior Hotel Washington) Lucas and Uncle Bryan

Aunt Lori & Uncle Bryan, and Cousin Jake

Two cuties