UES?

This is going to be a long post.   It’s going to be so long I think I’d better start by dividing it up into sections so I can keep it all straight.    This section, let’s call it The Introduction, is where I say today was one of those Monday Detroit Surgery mornings.   We don’t know what will happen until the day of surgery because if you’ve been following this blog for some time, my daughter’s eyes are anything but predictable.   Today we did have surgery on one of her eyes, we now know more about the other eye and we have a plan on what next steps will likely be.    But let’s start with the easiest topic first:

The Right Eye
To sum up the history of my daughter’s right eye: it was the most damaged in the original incident/injury and has had the most work done to it over time.   It has light and dark perception with some ability to discern colors.    There is a chance it can see more, but so far we haven’t seen much evidence to support additional vision is possible.    However, lately (as in the last four to six months) the eye’s field of vision has been blocked by fibrous growth scar tissue that may have been from an internal bleed from a surgery.   Or it may be unrelated, we don’t know.

Today Dr. Trese elected to do surgery on the right eye, leaving the left for next time.   He opened up an oval section in the scar tissue about 3mm vertical and 2mm horizontal in size.  This isn’t much different than the field of vision we have as normally-sighted people, so if the eye can see, this will give her a good chance.    We’ll know more tomorrow when the bandages come off and she adjusts to the light she may be highly sensitive to.

The Left Eye
Here’s where it gets complicated.   To review recent events: the left eye was pretty much all my daughter’s vision but it had declined due to a progressing cataract.   After the recent cataract removal surgery my daughter seemed to potentially see more (even without an accurate refraction) but then had a sudden drop in vision.    Two weeks ago we found out she’d developed a hematoma blocking most of her field of vision.   Steroid drops were prescribed once per hour (fun) and in two weeks (today) Dr. Trese would see how much things had improved and consider surgical intervention if necessary.

Dr. Trese’s Theory is the left eye lost some pressure after the cataract surgery and got bumped causing the hematoma.   This isn’t likely in most eyes, but my daughter has a perfect ocular storm that makes it more probable.   She has irregular vasculature (blood vessels) and hypotony (low pressure).   That, coupled with the potential side effects from invasive surgery like cataract removal made her more susceptible for hematomas.

At this point 80% of the hematoma has been absorbed.   Dr. Trese can see the retina, optic nerve and…the retinal folds.   And this part is the new part—the new wrinkle, if I’m going to try and be literal about it—the retinal folds are back, and that’s not good.  They appear to be new over the past two weeks because they didn’t show on the ultrasound two weeks ago here in Detroit and didn’t show at the one two weeks before at Duke.

There is another thing they were able to see today via ultrasound and that’s the choroid, the layer directly behind the retina, the thing from which the retina detached, is thickened.   It is upwards of three times as thick as it should be in some areas.    This indicates the choroid has been strained for some time.   And that’s where the title of this blog post comes into play.

Dr. Trese said there’s a possibility my daughter has Uveal Effusion Syndrome (UES).   It’s a very rare  condition characterized by choroidal fluid collections, often in association with serous retinal detachments.    Hold on, did you hear that long-time readers—“serous retinal detachment”?   That’s how this whole thing got started, well, that in conjunction with inflammation and ciliary body damage, but that was the main thing that damaged her vision.

So for now the UES is a question, not necessarily a diagnosis of something my daughter has.   Also, don’t mistake UES as the possible suspect for an overall diagnosis either, there’s not just one overarching thing causing all the havoc in my daughter’s eyes.   Dr. Trese will investigate the possibility of UES further as we move forward.   One thing that would be nice is that UES can potentially be managed medically versus surgically with drops.    Less surgeries would be nice.

And while he didn’t perform surgery on the left eye today, he did add Healon to it to increase the pressure because he said there is a possibility the pressure was artificially reading higher than it actually was due to the blood in her eye.  

Today
My daughter will need to sleep sitting up or propped up for at least a few weeks.   She has to wear shields over both eyes, with tape that in order to keep the patch on overnight, sticks to her hair and tears it out the next day and leaves adhesive residue on her skin, so that’s fun.   We have drops in one eye every hour while she’s awake and three drops I’m not sure how many times per day in the other eye (I’ll find out tomorrow).

Oh and one other thing, Dr. Trese said my daughter is a, “Fibrant Former” which means she forms fibrous scar tissue very easily, hence some of the issues we’ve had in her right eye.   The frequency and regularity of the steroid drops will help prevent this process in her eyes.

Next
We return in two weeks for another surgery in which Dr. Trese hopes to be able to do something more therapeutic to the left eye.   This will likely be a vitrectomy with added silicon oil and possibly PFO, the heavy substance that helped lay down the retina in her right eye.   There is also a second option to address the potential UES.   Surgically he could open some scleral slits to help drain any fluid buildup.

And what about that refraction I keep going on and on about?   Well, things have changed yet again and as Dr. Trese so aptly put it today, “we’re a ways away from a refraction at this point now.”   Those retinal folds make it hard to refract light in a regular manner and you need that in order to get an accurate prescription.    But there might be one small upside to this and that’s the right eye.    Back in 2015 when my daughter had her first eye surgery, they removed the natural lens in her right eye.   Since that time she’s never had a strong enough pair of glasses on her eye to correct for that lack of lens.  

I’d like to say we might find out what she can see (if anything) when the gauze comes off her eye tomorrow, but I’m going to hold off on that hope for now because she has two small stitches right slam in the front of her eye, just exactly where you personally would least like to have stitches in your eye.   She’ll probably be light sensitive and may, like before, choose not to open the eye for five days or until the stitches start to dissolve.  But I’m patiently hopeful for now.

The Big Boy Update:  My son isn’t getting a present from his sister when we return home tomorrow.   There was nausea after surgery we didn’t know about which culminated in lots of vomit all over the rental car, car seat and my child.  She was still nauseated come dinner time and we just didn’t make it to the store in the mall to get him a present.   When I told him on the phone he was understanding.   When I told him we had a multicolor volcanic rock we’d taken from the Red Robin parking lot for him instead, he was surprisingly chipper, asking if it was heavy and being even more interested when I told him volcanic rocks weighed less than regular rocks.

The Tiny Girl Chronicles:  My daughter was waiting to go into surgery today.   She usually walks back and they give her the gas mask and she goes right to sleep.   I’ve never been there with her before though but I knew what she meant when she said in frustration, “I’m hungry I want to do the smelly nose thing now.”