All of us Vs Keratoconus
I live in the US. I was first diagnosed with Pellucid Marginal Degeneration which is very similar to Keratoconus about two years ago. My Optometrist struggled to fit a scleral lens on my eye for the better part of one year. It was just a very slow process because every time it did not fit correctly, a new one had to be manufactured. The PMD got to my "bad eye" with vision reduced to 20/80 and my good eye did all the work with 20/20 vision.
So after two years of suffering from PMD in my bad eye, I asked the doctor to re-scan my eye and help me determine if any tissue has degenerated in that amount of time. To my disappointment, there was some MINOR tissue loss in my bad eye and my good eye was fine. So I expressed interest in pursuing Cross Linking to stop the progression of the tissue degeneration before it got any worse. My optometrist referred me to another doctor who she thought specialized in that and I bounced around a little bit before finally being referred to a doctor (optometrist) in a city a few hours away from where I live.
After an initial appointment with him, he scanned me with eye scanners that were way, way more advanced than even the OptiMap scanner in my regular optometrist's office. He discovered and showed me some slight discoloration in my good eye that helped expose that the disease was just starting but in very early/initial stages in my good eye. This doctor suggested I receive Cross Linking in both eyes rather than just my bad eye which was badly affected by the disease.
Knowing ahead of time I was in for quite a bit of post surgery pain, I was really stressed out about the procedure and in dealing with the stress, decided to neglect researching the overall procedure or anything about it.
This coming Thursday will be two weeks after receiving epi-off Cross Linking in both eyes. To my disappointment, my one good eye that I exclusively relied upon is no longer 20/20. Now, it fluctuates between 20/40 in the first half or first two thirds of the day and 20/30 for the second half or second two thirds of the day. I saw my regular Optometrist last week who confirmed that the eyes are still in a "rapid healing process" and that they are healing very well. She recommended reading glasses at the +1.50 level but they have not given me a lot of improvement. For one thing, I use computers a lot and need to sit excessively close to the screen for the reading glasses to improve my vision.
I'm kind of anxious to receive something better than reading glasses--either a contact lens or glasses prescription for this eye problem I'm dealing with.
I also feel very, very stressful that my vision is this poor after Cross Linking surgery. I visited an Ophthalmologist who offered a dissenting opinion about my decision to receive surgery in a 20/20 eye even if it was showing early stages of degeneration. Between the conflicting opinions and the limited vision, I feel like I'm in a really bad place right now and was hoping to reach out to the online community here.
It is very stressful however two weeks is very early on in the recovery, there is lots of time to go for the cornea to settle down.
Mostly by 3 months most of the recovery will take place and the settling down can go on for six months and sometimes longer by a smaller margin.
Crosslinking is more effective in early progressive keratoconus however if you carry it out when vision was 20/20, it is/was unadvisable, unless a clear progression has been documented, although progression is unpredictable and can occur at a fast rate...and so you may have helped yourself. Its good that you was proactive to catch and treat any progression early on and use crosslinking as a preemptive measure.
Most times both eyes are affected with one eye being affected much more than the other eye and you have done the best you can to save vision, although you should have been advised better on treating only one eye at a time, starting with the worst eye first.