Thursday, July 11, 2019

My journey into scleral lenses - part 1 - up to present day

I'm recording this because I'm hopeful that I'll be able to provide something I have struggled to find as I've embarked on this journey - a user story, some honest feedback and some useful hints and tips. 

Part 1 - My history with Keratoconus

Diagnosis & Hard Lenses
I have keratoconus.  An ophthalmologist suspected  I had this when I was about 12.  But didn't mention it until I went back 2 years later and said 'ah yes, as I suspected 2 years ago, you have keratoconus".  I kind of wish he'd shared his suspicions earlier or at least insisted I return sooner than 2 years later.  But that's several decades ago now!  I don't actually recall when I started wearing RGP (rigid gas permeable) - or Hard lenses, but I do remember buying new glasses frames during a school trip at about 15, and then losing my right hard lens on another school trip just before I turned 17 (end of 1991) - so somewhere around those ages, about 27+ years ago now.  I went through a variety of lenses as the technology changed, including having to have a tiny hole pierced in my lens to allow for tear flow, and eventually a piggy back system for my left eye - more on that below. 

Right eye transplant
I had a corneal transplant in my right eye in 1997 - I have a vague recollection that some point prior to that we (my optometrist & I) had largely given up on my ungrafted right eye being useful and with glasses I only had a prescription in my left eye.  These days, it is my right eye that does all the work and my ungrafted left eye gets enough correction to give me distance judgement, but no focal point.  Without lenses even basic objects are unrecognisable.  Even basic shapes for that matter!

Current Day System & Challenges
My most recent setup has been a piggy back system on my left eye, with a soft lens of minimal power to act as a bandage and protect my very pointy and very thin cornea (which also has scar tissue from a hydrops event), and a Rose-K (I believe!) lens on top to do as much vision correction and distortion reduction as possible.  And a rose-k (again, I believe) in my right eye - which is one that Paul Rose himself made me for back when I lived in Hamilton - early 2000s!!!  Any new lenses made for that eye just don't seem to work for me, resulting in severe ghosting to the point of converging double vision, or awful starring in the outer region of my vision - like a halo of sun rays surrounding a clearer center - not workable! 

I'm comfortable with this system, though I have become very adept at catching falling lenses, especially out of my left eye, and if I cry with them in.  As mentioned, that left eye is very pointy, the bandage lens can't help but bubble at the edges, and the hard lens is basically teetering on the tip - so instability is to be expected.

Why I'm exploring options
The last time I had a "Oh my word!!! THAT'S what the world looks like in focus!!!" moment was when I lived in Hamilton.  I have good enough vision, however, over the last couple or so years, I have noticed that the fine work I do - book binding, zen tangling, calligraphy, drawing - have all become difficult to sometimes just too hard due to lack of ability to see the fine details.  Even reading the computer screen at work had become more taxing than I let myself admit to, and if I had a lot to read I would typically print and read from paper.  And I do remember that feeling of having a new lens in my eye and discovering the richness of sharp lines and crisp shapes.  And I miss that.  And I work in technology, so I actually have pretty high expectations on what technology ought to be able to help us with these days (sadly I'm frequently disappointed and horrified, but that's another story entirely).  Fortunately my optometrist was keen to get creative and see what else we could do to problem-solve and hopefully improve my vision.

Next options include having my left eye grafted - something my optometrist has used the term "game-changer" about, and that does make it mighty tempting, but part of me still feels a gut instinct to keep as much of my own cellular material as I possibly can for as long as I possibly can.

I've had a consultation with a surgeon this year regarding grafting my left eye, but he also enlightened me on a bunch of things I never knew about my right eye -

  • my graft is off center - so if/when I need a 2nd graft in that eye, there's not a whole host of room at the bottom to widen the graft site
  • there is an option to surgically thin parts of that graft, which apparently would make lens fitting easier
  • my native cornea at the base of the graft is showing continued progress of the characteristic keratoconus thinning and buckling - which I suspect is why I get that halo of rays at the outside of my vision with some lenses (and possibly even with the current one sometimes, but I think I put it down to tiredness or dry eyes.
The other option, not to be considered as an either/or to grafting, is something I thought I'd have to go overseas for, but fortunately now I only need go as far as Christchurch - which I love, so win win!  And that is to have a laser-fit custom lens made.  What I hadn't realised, is that this is a fitting for a scleral lens, not just a more accurate approach to fitting what I'm already using. (Maybe it is that too, but I'm unaware of that). 

In part 2 I'll explain what a scleral lens is in comparison to my current system, and how the fitting process went, and my initial (actually current, not just initial!) challenges - which I hope to have hints for in the weeks to come!!! For my own sanity as much as your edification. :D