I’ve had Radial Keratotomy several years ago (before Lasik was invented), but it turns out my vision has deteriorated recently, probably because of my weakened corneas. My Opthamologist has suggested Corneal Collagen Cross-Linking as a possible treatment to keep them from getting worse. I’ve looked the procedure up online and know how its done, what it does and that it will be FDA approved in the very near future.
Does anyone have experience with it, or have thoughts about it. I think its really for me (as does my Dr.) but I’d like to get some first hand perspective if possible.
I have keratoconus, so that is something I might have to have done someday. It is my understanding that it helps slow or halt the progression of the disease.
Did you ever have it done? I’m bumping this because I have an appointment with an ophthalmologist who is conducting an FDA trial of cross-linking next month.
My left eye has been beyond 20/20 correction for 4-5 years (I’m 32) and my optometrist suggested that I might have keratoconus back when it first occurred. At the time I took it seriously and made an appointment with an ophthalmologist, but they called back a week later to say they didn’t take my insurance and were cancelling. I blew it off for a while after that because I was starting law school and remodeling a house and some other stuff.
Last month I went to see a LASIK specialist who diagnosed keratoconus after seeing my corneal scans. It just so happens that he previously did an FDA trial of the procedure himself in another city. The doctor doing the current trial is only seeing me because of his personal referral because of that, as the trial is apparently “closed to new patients” otherwise.
From what I’m told the procedure is basically the only choice other than “wait for the disease to progress until you can barely see and then have corneal transplants.” The latter procedure sounds so awful I think I’d rather just not see (26 visits to have the sutures removed!)
If you are asking me, I have not.
FWIW, the last doctor I saw said I do not have keratoconus, but pellucid marginal degeneration.
I meant Sigene, but you would have done too. 
Purely anecdotal, but I’ve know three people who have had corneal transplants, two for keratoconus, and they were happy with the results. Surgery in general isn’t fun, but it is an option.
Meanwhile, good luck on your research and final choice.
Thanks! I’m all but certain I’ll do the trial if the prognosis is as good as the first doctor told me it is. For one thing, it’ll mostly be free since the pharma company pays for the cost of the procedure, and for another I don’t have to wait 5-10 years before I can see properly.
Ophthalmology Guy here.
IANAD, but I’m a lay clinic director at an ophthalmology practice that specializes in cornea and anterior segment surgeries. We perform corneal cross-linking and have done several clinical trials to assess its safety and efficacy. Modesty aside, we’re probably one of the more advanced cross-linking centers in the US, in terms of experience and technology.
What do you want to know?
SLC! I think one of your doctors was recommended to me by the first guy I saw (with the caveat “but you have to go to Utah.”)
How do you do cross linking outside a clinical trial if it’s not FDA approved? Can it be done “off label”?
Probably. 
We do a few select cases off-label, wherein the patient signs a release/waiver a foot thick (and we would still lose our asses if they had a bad outcome), mostly in cases where people have been referred to us after botched LASIK and the only other option would have been a corneal transplant. However, clinical study patients still form the vast bulk of our treatments; luckily, they’re “open” studies (no finite patient cap) so in most cases, if someone needs it, we can try to qualify them for one of the studies.
There are doctors out there doing a ton of it off-label. I can think of one guy in Beverly Hills who does it preemptively on every LASIK patient.
I really appreciate your insight. How much does it cost in a trial setting? How much does it cost off-label? Will insurance cover the latter (at least where you are?)
For our clinical trials, it’s often free, or a minimal cost that covers our hard costs to operate the device. Off-label, usually around $3000/eye.