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Collagen Cross-Linking for Keratoconus- patient testimonial & video procedure

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Uploaded by on Jul 26, 2010

The most promising technology for treating Keratoconus called collagen cross linking (CXL) with UVA is currently being introduced into the United States under experimental protocols in Clinical Trials. This treatment, which has been used in Europe for eight years, now is undergoing Phase 1 FDA clinical trials in the United States. It has been demonstrated to be safe and effective if performed, with the epithelium removed, and has the potential to stop the progression of Keratoconus. This treatment is recommended for individuals with progressive Keratoconus or Ectasia following LASIK to stabilize the cornea. It can be performed with our without INTACS. Even though enrollment for this procedure for the FDA trials is closed, our center is one of the only centers in the United States that has received and I.D.E. (Investigational Device Exemption) from the FDA to treat patients with this procedure and we are currently enrolling patients under an Investigational protocol.

This protocol allows us to enroll patients for the next 5 years and can be viewed on the government website -- www.clinicaltrials.gov. Since this treatment is still regarded as experimental in the United States it should only be done with Institutional Review Board (IRB) approval, so that patients can adequately be protected.

The procedure, which is painless, is as follows. The top layer of the cornea is removed under local anesthesia. Vitamin drops are soaked into the cornea until they penetrate the entire corneal and evidence of penetration into the anterior chamber of the eye is demonstrated by slit-lamp evaluation. Once this is confirmed the patient's eye is put under a specialized lamp, which emits UV light at a predetermined wavelength for approximately 30 minutes. During this process the cross links, which link the fibers of the cornea, are increased thereby stiffening the whole cornea. A bandage contact lens is then put on the eye and patients are given antibiotics and anti-inflammatory drops and follow up on a regular basis with their physicians for several months. Many patients notice an improvement in their vision at 3 to 6 months and European studies suggest that only 5-8% of patients need to be retreated.

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Uploader Comments (corneagenetic)

  • Many keratoconus patients who have suffered with painful hard contact lens find the pain manageable considering that it's temporary.

    It's important to consult a cornea specialist about your individual circumstance before having CXL.

    We very much appreciate your comment, as it will help others suffering from keratoconus weigh the potential days of pain to the potential gain.

    Thank you for sharing.

  • im seeing my specialist tomorrow about xlinking and intacs, very nervous, 33 years old so am in the final stages of KC but vision is very bad and gettin me depressed,, thanks for the video helped to reassure my nerves alot.

  • @ashie1978

    Good luck & we're happy the videos helped.

  • How are you feeling now..

    Has it improved your vision? I know it will stop the progression of the disease.

    Please reply.

  • We just uploaded Sarah's 1 year & she had PRK to tweek the vision. Check her 2 latest videos to hear her story.

  • @MegaBhejafry

    We just posted Sarah 1 year progress report.

see all

All Comments (28)

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  • I suffer from keratoconus. I am seeing a specialist next month. CCL is one of the options. My eye doctor says eventually laser treatment may also be used after CCL. Have you heard of this?

  • I am 14, and I just found out 2 days ago that my vision in my left eye has progressed so far that I am way beyond the procedure's requirements. My right eye has been fine for the past 2 years, and because of that i have been able to see with little effects from the kerataconus because my right is my dominant eye. It has started to worsen, and I'm a bit scared. I can get it on my right eye, but they are waiting for some reason. It sucks i cant edit video. I can barely see what im typing.

  • I had cross linking done in in one eye in December of 2010. The actual scraping wasn't bad because of the anaesthetic. You're awake through the whole thing. The pain really sets in the next morning you wake, my eye was really red, vision had worsened and it was really red, 2-3 days later it got better. And comparing my vision with how it was back then, there's definitely a huge improvement. Plus I can tolerate the RGP lens much better. :) And it's sits stable on the eye.

  • OK, lets not exaggerate. No pain, only uncomfortable?! With the epithellum tissue removed, it is going to be very painful in the next few days - that is certain. You can only try to ease the pain, but it is definitely there :). After a few days, it is getting much better and easier. In the edn, a worthwhile procedure, and very very helpful. But please, lets not exaggerate :)

  • @dvilla45 Hi Have you had your proceduere done yet? Who was your doctor? we are at the begining stages of research and would love a recommendation if you liked your doctor. Thanks!

  • My boyfriend had this surgery a week ago. He's had quite a bit of pain in the first 2-3 days, but that became less very quickly. We had the first check-up today and our churgin was very happy how his recovery went.

  • @corneagenetic wow! it's to bad that people like me can not afford it due poverty of 20K it is one of those either a doctor can help or say we are sorry we can not. I am in Advanced minus 14.50 right eye the lens I have now are gas perms the pair is $500 only for temp or to say borrowed time until it get's worse.

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