Lattice Degeneration and Retina Tearing. 

Months ago I noticed a black line in my left eye that resembled a piece of lint.  At first I figured something was on my contact, took it out and cleaned it several times and realized that it wasn’t.  I just blew it off and figured I would check it at my regular eye exam, no big deal.  Well, yesterday was my regular eye exam and turns out I was wrong.  In the time since my last eye exam apparently I’ve had a significant increase in degeneration and the ‘lint’ was actually a ‘floater’ caused by fluid leaking into my retina.  Now, I’ve been seeing my eye doctor for 25 years, he’s an excellent doctor, and a really genuine good person.  I’ve never, ever seen him that upset about something.  He berated me firmly, but gently, for not calling him right away when the floater appeared and then reiterated the fact that we that have EDS are more prone to sudden retina separation.  Not getting treatment in time could lead to irreversible blindness.  He wrote with big letters in permanent marker “HIGH RISK OF RETINAL DETACHMENT!!!” and “GET DR. IMMEDIATELY IF PT CALLS!”  Okay, that act alone sort of drove home the point.

He went through what was going on with it after the dilation and exam and told me I have some options but with me having EDS he wasn’t at all confident about which option would be the best.  He asked me to do some digging for info on my end while he did the same on his.  Together we will decide what the best course of action is from there.  He wrote down the specifics to make it easier for me to do searches on and David and I went home. 

Now, I hate overreacting to things and I try not to, but the idea of going blind just hit me like a 2x4 upside the head.  I’ve dealt with fractures, surgeries, daily dislocations and been stuck in the wheelchair because of my hip refusing to stay in the socket.  I’ve adapted to things in a ton of different ways, replacing glasses with plastic cups, only purchasing certain shapes of cups so that it’s easier for me to hold and less likely I’ll drop, replacing my glass measuring cups with plastic ones, buying pints of milk because gallons are too heavy, cutting my hair short so I don’t have to try and blow dry it, etc.  The list goes on and on.  All of them were thought out and accepted because it was/is the best course of action.  I’ve done my best to just roll with the punches and not be all drama about them.  But going blind??  It was just a ‘full stop’ moment.  I can deal with not walking, giving up hiking, giving up my horse, giving up solo grocery shopping, not riding my bike anymore, not being able to go for a nice long stress relieving run, but going blind?  BLIND?!?!

So my day yesterday rather was blah.  It took me the whole day to just wrap my mind around the idea that I could go blind.  Once I did get it wrapped up and plopped a bow on top I returned to my more normal attitude of ‘just another part of life with EDS’ attitude.  Then I started searching for information, education is key to just about any condition.  I haven’t made any decisions on what I want to do yet.  For one, I don’t really want to pursue any further ‘treatments’ until after our first grandbaby arrives.  After that, well, we shall see.  Some of the things I read highly suggest being preemptive, having surgery to try and stop further thinning and tearing which could possibly stop the spontaneous retina separation from occurring.  Others suggest the wait and see approach but if this or that happens then you are forced into a full blown surgery to try and repair the separated retina, which has a much higher failure rate than the preemptive surgery.  So, for now at least I will wait.  Once the grandbaby is here and I’m back home from helping out his mommy, then I will take up the cause again and make a decision.