We had faith in our doctors, for we had many. We were fortunate to live right by Duke Hospital and the Duke Eye Center was a preeminent location in the country for specialists. We started asking around, discussing who or where we should go for a second opinion. The news of my daughter's eyes spread like wildfire through friends and family and we were getting unsolicited suggestions of other doctors across the country who were reputed to be "the best" and had we considered seeing them?
I started a document of alternate doctors because I was getting so much information. One name that came up, again and again, was Michael Trese (pronounced Tracy) in Detroit. We asked our doctors at Duke about the possibility of a referral to him. We heard what might be expected though, and that was it was very hard to get an appointment because he was in very high demand. We didn't have time to wait though, my daughter's vision was not staying stable, it was deteriorating and there were other worrying signs. We were told they would try to get us a referral, though.
And that's when chanced on a bit of luck. One of Dr. Trese's current fellows had come from Duke. Our doctors, through that connection, got news of the bizarre case that was my daughter's eyes and within a week we were on our way to Detroit to be seen in the OR by Dr. Trese himself.
Dr. Trese looked at my daughter's eyes in one of those EUA's we had had so many of in which she's put to sleep so they can look in-depth and all around her eyes. He came out of the OR and the tall, quiet, grandfatherly gentleman spent about ten minutes explaining what he'd seen. And he'd seen a lot.
Her retinas were by now buckled. We knew about this already, from Duke, but he explained more, saying that the retina had folded in it from being pressed towards the center of the eye due to the fluid behind the retinas. This had likely changed their shape so that even if they could get the fluid to resolve, it might not be possible for her retinas to ever lie back down well. It also appeared there was a lot of damage to the ciliary bodies in her eyes. He wasn't sure if that was a result of other things or if that was the inciting problem.
Ciliary bodies produce internal fluid for the eyes. They produce fluid which then is drained through a ductwork mesh. This process is ongoing and is called the aqueous flow which circulates fluid and maintains eye pressure. Something had damaged those ciliary bodies, interrupting the natural flow. Somehow the fluid that should have stayed within her eyes had gotten behind her retinas. This explained why the situation wasn't resolving. The fluid was either being replenished by the ciliary bodies and couldn't adequately drain or the drainage ductwork was damaged along with the ciliary bodies and nothing was flowing at all within her eyes.
The latter seemed more likely because both eyes were at a pressure of zero. High ocular pressure can cause damage and is known as glaucoma. Low pressure is another animal. High pressure can be resolved with drops that reduce the amount of fluid the eyes produce to keep up with the eye's ability to drain. Low pressure, well, there's no way to just force fluid to be made when the bodies that produce it are damaged.
What he suggested was coming back to do radical surgery. He was going to do a vitrectomy in her right eye. He selected that eye from his initial examination of her before going into the OR, where he had done a few tests and found out another thing we hadn't realized: the right eye could see almost nothing at all, having only minimal light perception. He said the vision she had remaining in her left eye was precious to her and he didn't want to do the surgery there in case it wasn't successful. I remember those words more than anything he's ever said, that her remaining vision was precious to her. I asked if he thought he could return her vision and then he said the second thing I remember the most, "I'm just hoping we don't lose any more vision."
He was going to remove the vitreous in her right eye and replace it with two fluids. The center part of the eye is filled with a clear substance that's a lot like jello in both consistency and behavior. If you've ever stirred up a bowl of Jello, you know that it gets fractured and becomes a mess. Mucking about in the center of the eye will disrupt the vitreous in this same way. The only problem is, the vitreous you're born with isn't replaced or regenerated. So any surgery to the interior of the eye requires removing some or all of the vitreous so the surgeon can do the work they need to do. When the surgery is complete, typically where the vitreous was removed is filled with a type of oil that will remain in the eye that won't drain out.
Dr. Trese would replace her vitreous with Silicon Oil and add a small bit of perfluorocarbon (PFO) to her eye. That substance was far heavier than the other things in her eye. She would need to spend lots of time on her back so that the PFO would exert pressure on her retina in the hope of laying it back down. He also was going to return both eyes to full pressure by adding a third substance to her right eye and the same single substance to her left, called Healon. This third clear fluid would boost the pressure in her eyes and would flow out with the normal aqueous flow. How long it took to do this was an unknown. In normal eyes, Healon injections lasted about a month. In her, it might last for months, he didn't know.
He asked if we could come back the next week for him to perform the surgery and we said absolutely. We left his office with not much change in my daughter's eyes, but some hope that there was a path, albeit what sounded like a long path, to begin to return her eye's anatomy to normal and possibly in the process return some of her vision.
At this point we had some email chains going with our doctors at Duke. Typically all communication happened through the portal and we wouldn't have had such direct access, but I'd been overwhelmed by the kindness and level of care we were receiving. My daughter's main pediatric opthalmologist even called me one night and talked to me for an hour, answering all my questions after my daughter's vision had seemingly deteriorated suddenly during one point prior to seeing Dr. Trese for the first time. The doctors at Duke agreed it was a very good choice to have gone to Dr. Trese because he had seen some things in a new light and had the expertise to do the surgery he had suggested. A surgery, I might add, that was not only uncommon, it was a Dr. Trese special. Nothing about my daughter's eyes would ever turn out to be common.
In the next part of this epic eye adventure, we become well-versed in travel to Detroit, visiting Dr. Trese more times than I can count in the hopes of returning some vision or, as Dr. Trese had said, hopefully not losing more.
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