Thursday, February 3, 2011

Lens Subluxation

When Einstein and Sis were getting ready for Kindergarten, I took them to Pearle Vision for a before school eye exam. 
The Dr there was a wonderful man, but he was quite perplexed with Einsteins eye, saying it looked black and scalloped. He didn't know what it was so he referred us to a local "specialist".
I say it in quotes because they were AWFUL! 
For many years we dealt with mis-diagnoses and very poor treatment. 
It would take six or more people to restrain him for eye drops to dilate. 
He had to wear a patch hours out of the day for YEARS. 
They were rude to him and treated us like we were stupid as well. 
The last trip they were extremely rude and very impatient with him and finally said there was nothing further they could do. 

I went to our regular Dr, asking to be sent for a second opinion.
 Oh how I wish I'd done so sooner! 
(PLEASE learn from my mistake! 
If a "specialist" or any Dr for that matter, treats you or your children poorly, FIND another!)

Our Dr sent us to the University. 
From our first visit, I have been so happy there! 
They KNOW how to treat kids! 
His first visit the drops were put in with a snap! 
NO restraining! 
They talked about Spiderman and while Einstein was checking the ceiling for spiders - drops were done. Wow was I impressed! lol. 
These guys are the true specialists. 
We learned that what he had was a very rare eye condition called Lens Subluxation. 
It's rare in and of itself, but even rarer in kids. 
It is generally caused by a trauma, or other disorders such as Marfans Syndrome so we were sent to genetic testing and other specialists. 
Everything was ruled out. 

There is not much information out there on this disorder. Even today, years later, I'm not really finding anything online. So here's how it was explained to us. 

Your lens is attached by tiny hair like 'strings' to the surrounding structure.  
His lens was only attached at the top, AND he is missing the bottom structure to attach to. So surgery to "fix" it wasn't an option. He also didn't qualify for a replacement lens, because again, there was no structure to attach to. 

His lenses were slowly moving up and the Dr informed us in the beginning that surgery to remove them was an option down the road, but as long as they could improve vision with prescription lenses that would be what they did.
Initially, his lenses were moving very quickly. We were making the two and a half hour drive every six months. When the movement slowed down, our trips went to yearly visits. Until October.

In October they could not improve his vision, AT ALL. 
Dr said it was time. 
Surgery was scheduled. 
The eyes would be split up. They would do the worst one first and a month later the second. 
They do them in separate surgeries for a few reasons. First, so there is still sight during recovery, and also to reduce infection and should something go wrong - there is still the other eye. (Reassuring huh?)
He had surgery in November and December.
Dr. said the closest information on the actual procedure (lensectomy) would be to research cataract surgery. 
Preparing for surgery.
Follow up the next morning. 
He says he looks like the Terminator! lol. :) 

Currently, his glasses are HUGE. 
Very very thick. 
The upside is that won't always be the case. 
Dr very much wants him  in contacts. 
He's just so not mature enough! When he matures and loses some of the destructiveness he will be able to wear them. 
He also has bifocals. 
When he goes into contacts he will still have glasses for the bifocal part. But it'll be much better. 
There is also a possibility that he WILL be able to have an implant later on!
Dr said there is an implant being tested in Europe right now. When it comes to the USA and gets FDA approval, he might be eligible for that. 

I'm still not sure how this will factor into things like driving? 
But he is seeing the BEST he ever has in his whole life! 
I wonder what the world really looks like for him now? 
His vision is now 20/15 and 20/25 - isn't that amazing?

1 comment:

  1. That is awful how the dr's were... :( :(

    I am glad he is seeing someone so wonderful now!

    I think its important to pray even for which Dr are family should go too.. I wont forget your story! I am glad he is doing well now!!