Nov 27, 2021

Out of the woods... for now.

With as much free time as I tend to have, would think I would have updated sooner.  At least I fainlly remembered, even if it's a few months later.

The corneal debridlement surgery went well; no real problems.  Cleaned off what could be safely cleaned; there were a few thin spots but mostly doing okay.  Added a contact lens for protection and an amniotic sac sewn into my eyelids to keep the lens in place and extra moisture.  Also some dissolvable plugs for my tear ducts to keep what little fluid was produced, focused on healing.

Overly enjoyed the meal afterwards since it was about 4pm by the time everything was done.  Trying to eat noodly food with no vision isn't fun when you're not used to it, but was worth it.

Stayed up there overnight for a follow-up at 7:30am the next morning (given it's a 2-2.5 hour drive each way, not driving home and back the next early morning).  But everything looked good.  They were kinda surprised I wasn't in more pain.  Other than when I basically got my nose broken, surgery pain has rarely been a problem.

First few days home were pretty boring.  Lotsa drops (lubricating/moisturizing and antibiotics drops almost hourly).  Vision was basically just a solid blur, but by the fourth or so day, it wasn't too horrible and I could kinda do most stuff I could before.  Some double vision, some random blurriness when the sac would get baggy and double up on itself... but for the most part, tolerable.

Then came the follow-ups.  

Thankfully the first visit was here in town, where my local doc said it looked good.

Following week was back up there again.  The sac was removed, and they took the lens out to get a decent look.  It wasn't healing as well as desired- the thinner patches hadn't healed up and it was a little dry. So, they needed to put a replacement contact back in, and... hoo boy.  That's when they learned just how strong my body tries to close my eye when faced with bright light.  (My local eye doc says it's one of the strongest reflexes he's ever seen.)  Took a pair of docs probably twenty minutes trying to get my eye open enough to get the contact in properly... but eventually made it.

I had hoped it was the amniotic sac (which was described as similar to looking thru wax paper) was what had caused the double vision, but it was apparently the contact.  The few minutes of my eye being able to breathe with neither one was nice; that ordeal putting the new contact in after, not so much.  And dealing with the double vision for a while longer... yay.

Another local visit a week later.  Still doing well, the spots that the specialist recognized were visible but improving.

Trip back up there again the following week.  Again, healing decently but not at the expected/desired pace.  If it wasn't doing better next office visit, would mean going back under the next day for another contact lens replacement and potentially another amniotic sac.

Thankfully, that next visit a week and a half later had improved enough.  Lens was taken out, vision back to normal (so happy to not have double vision any more!), and got back to my regular follow-ups with my doctors down here.

So overall, after 1,000+ miles of trips back and forth over a month and a half, vision seems about the same as before the problems started occurring, but lack of blurriness is great.

Now the final part of the equation, seeing how long this will last.  Might not need to happen again, might be a few years; hard to know when the radiation damage is sending all the mixed signals.  At least we know a bit more for the future and can probably avoid some of the middle visits and just keep it secured longer.  Not fun for trying to see during that time, but I think I'll take it to fix those vision issues.

(Though I am going back up there again.  CJ's new oncologist is connecting me with a geneticist revisit to se if technology has improved enough to isolate my specific Rb1 mutation that wasn't visible before.  At least I know what to expect there.)