All of us Vs Keratoconus

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Post Info TOPIC: Newly diagnosed, need guidance please


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Posts: 3
Date: Mon Feb 22 4:48 PM, 2016
RE: Newly diagnosed, need guidance please

Hi Gizmo_the_dog,

As previously mentioned, cross linking is a procedure that was developed to slow down the progression of keratoconus. Within the cornea there are collagen cross-bridges that provide structural integrity for the cornea. For patients with keratoconus, they are either lacking the enzymes that produce the collagen cross-bridges, or have too many proteases that break these collagen cross-bridges down, either way this results in a compromised cornea causing it to protrude into a cone shape. The premise of corneal cross-linking is that if you harden the cornea, it will slow/halt progression. Cross linking is not a new procedure, and has been around for awhile now because it works, in fact it's widely available in many countries except the USA already, due to the delay in the FDA approval. The FDA is trying to lock down the ideal treatment statistics to make the results more repeatable for each patient - how much riboflavin is required, how long UV light must be applied, should the epithelial layer be removed prior to the treatment, etc. Since it does not have FDA approval yet, it is required by law that it is called a "trial", though it has been proven to be successful in many other countries. 

For patients that are newly diagnosed, I typically recommend monitoring with topography, as well as pachymetry (corneal thickness) in 6 month intervals. In an ideal situation, the optometrist monitoring you would have a pentacam so they would be able to monitor the curvature of the anterior and the posterior surfaces of the cornea. Since you are (most likely) mild in your right eye, mild/moderate in your left eye (based on your visual acuities), as well as based on your age, I would personally feel this would be the best course of action for you. Prior to jumping into a procedure that is designed to stop progression, it's best to find out whether or not you are stable/progressing first. I recommend going into an optometrist that has a history of working with keratoconus patients (an medical based optometry clinic) that has a topographer + pachymeter. Have your cornea measured with these machines and then repeat in 6 months (3 months, if you are worried and prefer the extra piece of mind). If it is not stable, I would look further into having the cross linking procedure done so you can maintain the corneal structure you have. If it is stable, you can repeat the tests again in another 6 months, and then yearly after that to monitor for progression. The number one thing that you can do to not increase its progression rate is to avoid eye rubbing. 

Have you ever been fitted for RGPs or Scleral lenses? 

All the best,

Dr. V


Doctor of Optometry with Specialty in Medical Necessary Contact Lens


Status: Offline
Posts: 1
Date: Mon Feb 22 9:21 PM, 2016

Hi Amanda,

I'm in my mid-thirties and have KC in one eye, the other eye is OK. Diagnosed about five years ago. I had CXL a few months afterwards. So far (knocking on wood) it hasn't gone worse and I can still read well enough with the affected eye to not need contacts, so I just wear my glasses as before. Since the other eye is unaffected, I'm usually not hindered very much by the condition. It is always noticeable of course but it only gets somewhat annoying in the evening with lots of point light sources such as vehicle headlights.

One thing I noticed over time is that an eyelash in the KC eye is much more uncomfortable in the KC eye than in the other eye, so to avoid that, I regularly pull my upper eyelashes softly between thumb and forefinger to catch any loose hairs before they can drop in an eye. Not really pulling them out, just catching the ones that are about to fall anyway.

I wish you the best of luck with your research paper and I hope that advances in medical science and technology will eventually bring a cure for KC.

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