The Frustrating Roller Coaster
by Wendy on August 15, 2010
in Health issues/care, Marfan
“How’s Aaron’s eye? Are they going to do surgery or not?” Answers have varied much more than expected–and more than my emotional state could handle–over the last couple weeks.
On the 3rd the eye doctor said Aaron’s lens was “stable” where it was and so he shouldn’t have surgery. It was so stable, in fact, that it stayed where it was for four more days before shifting from the bottom of his eye over to the left side. So instead of seeing double when looking down, he started seeing it sort of pop in and out of his vision from the left. It’s not double vision but more like he has a hair in his eye that he can’t get out, and sometimes light reflects through it in funny ways. Assuming that it having moved meant it was, you know, actually not stable, we started thinking surgery again. He got squeezed in at the eye specialist’s on Monday afternoon, although he wasn’t able to see his regular doctor.
This guy said it probably had moved, but it was still not a problem to leave it where it was. Aaron said but this is really annoying in my vision. He said but surgery is risky. Aaron said you don’t understand how frustrating this is. He said you don’t understand how risky it is. He really pretty much made it his mission to scare the crap out of us as far as the idea of surgery. And it’s understandable–it’s their job to weigh the risks based on their expertise, and given Aaron’s history…. But still frustrating.
Aaron will see his usual specialist this week, but the discussion will probably be the same. The other doctor did say it’s possible the lens would completely detach and fall all the way down to the bottom of his eye where he wouldn’t see it at all, and they’d still probably leave it there. Maybe that would be less frustrating. Meanwhile please pray that stable really means stable, or if it’s going to move again it moves to the least annoying (but still retinally safe) place–and that Aaron can adapt to and accept however it’s going to be.
(That sermon on contentment really sucked!)
Now that this roller coaster of yes-no-maybe-so surgery thoughts is hopefully coming to a complete stop, we are looking ahead to seminary starting back up for Aaron and a new routine for all of us. This week is sort of the last hurrah of summer already, since orientation starts next week. I feel like I shouldn’t say it, but I think I’m ready for fall. But not winter!
Here Eye Go Again
by Wendy on August 1, 2010
in Health issues/care, Marfan
I think I’ve written this post before. It sucks.
Aaron is going to have eye surgery soon. He only has vision in his right eye (due to retinal detachment in the left, years ago). So while we kind of took it in stride when we found out–because hey, what’s one more hospital trip this year?–the reality is that this is a big, scary, pain in the —— deal.
In 2006 he had an artifical lens implanted in his right eye. On Wednesday it fell out, basically. Aaron and our friend B.McD were going to take the kids to the beach, but as they were leaving Aaron felt like his contact was messed up. He couldn’t fix it, couldn’t fix it, and realized he couldn’t see anything with his glasses on either. A neighbor friend took him to the hospital and B. heroically insanely took all the kids to the beach anyway. The hospital sent Aaron to a nearby opthalmologist, where I met him.
The doctor seemed almost a bit too excited when he was able to confirm his theory: Aaron’s lens had dislocated and slipped down toward the bottom of his eye, so he was able to see pretty well looking straight ahead some of the time but had bad double vision especially when looking down because the lens would sort of float into his line of vision. The doctor said the lens possibly came loose because Aaron’s eye shape has changed quite a bit–his prescription actually went from a positive to a negative! This would be unusual for most of us but is not so unusual for someone with Marfan Syndrome, because it makes tissues stretchy, and the gas permeable contacts he was wearing may have contributed.
They’ll have to take the lens out of there, but this doctor thinks they won’t put in a new one because now he is actually seeing better without a lens than he was with the implant. Crazy. Tuesday he will see the vitreo/retinal specialist who will do the surgery, and we’ll see what he says about a new implant. Aaron did get new glasses with this new prescription Friday, so he can see and drive again in the meantime, although sometimes he still gets the double vision.
Please pray for all the doctors’ wisdom and for the upcoming surgery, which will probably be early next week, and that his retina is protected while the lens is floating around in there. I’ll let you know after Tuesday what the plan is.*
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*Dangitall, am I going to have to get on Facebook too?!
