In the February NKCF Update, we asked those who had corneal crosslinking (CXL) about their experience.  Seventeen people responded.  We thank them for sharing their opinions.  Nine were male (52%); seven were under the age of 30.  Thirteen had the procedure in the US.  The earliest was treated in May 2011 and the latest in August 2020.  Eleven reported they had the epi-off procedure (64%), five had epi-on (29%) and 1 was unsure of the protocol used.
While eye surgeons recommend pain-killers or prescribe medication to minimize post-operative discomfort, many prospective patients are concerned about pain associated with CXL.  The cornea is the most densely innervated tissue in the body: pain can be powerful but is generally short-lived.  Indeed, ten of our respondents (59%) said they experienced intense pain for the first day following the procedure and four (23%) described intense pain lasting 48 hours.  Patients whose epithelium was left intact (epi-on) did not report any less pain that those who had the epithelium removed (epi-off).  In fact, of the three subjects who reported the lowest levels of pain (“mild irritation” or “mild pain”), one had epi-on and two had epi-off CXL.  These results mirror published studies.  In a Mexican clinical trial comparing pain management therapies, patients completed a survey immediately after CXL and daily for the next several days.  In that study, patients who underwent either epi-on or epi-off CXL complained of significant pain immediately after the procedure but noticed the level of pain decreased each day, until day 5 when it became negligible.
In the NKCF Update poll, respondents were asked to assign a number to the overall experience, with 5 being the most satisfied and 1 the least satisfied.
Eleven (65%) gave the experience a score of 4 or 5.  Eight of these patients had the epi-off procedure and three had the epi-on protocol.  Two reported that their vision stabilized in less than a month and six described vision stabilization between 1-4 months.
Of the three (17%) people who scored their experience 1 or 2, two had epi-off and one had epi-on CXL.  Two reported their vision stabilized in less than 1 month and one reported that vision took 8-12 months to stabilize.
Doctors tell their patients that CXL is performed to stop the progression of KC, but many patients expect vision improvement as evidence of success.  In the comment section, some who gave the experience a higher overall score reported their vision had improved (“I no longer need correction to achieve functional vision”).  Others who were satisfied wrote that CXL reduces uncertainty (“I have hopes that the procedure prevented me from having a corneal transplant later”).  Another wrote, “Do it sooner than later.  You won’t regret it.”
Those who are less than satisfied with the experience had comments like, “It doesn’t work for everyone,” and another, “Does not work.  Still can’t see without gas perm lenses.”
The unhappiest were not those who suffered the most pain, or had long periods of unstable vision. They were not older or younger; or those who had epi-on or epi-off.   Our survey could not identify a single factor that caused a patient to be more or less satisfied with the experience.  Perhaps one individual expressed the most astute comment with the observation, “The procedure is necessary to arrest KC progression, so without thinking whether you like it or not, just go with your doctor’s advice.”