Hello everybody!

I went to the doctor today and she told me that i need to do a surgery to stop the progression of my keratoconus on my left eye.

She gave me 3 choices:

corneal collagen cross-linking (CXL),

intracorneal ring segment (ICRS) implantation by laser

intracorneal ring segment (ICRS) implantation by hand.

Which is the best option? and why?

Thanks for your help!

For Anyone Like Me Who's Thinking About Getting CXL But Don't Know Which One To Get and appreciates evidence-based medicine.

EDIT: sorry I thought I put the link as the title

https://www.hindawi.com/journals/joph/2018/4947983/

https://www.youtube.com/watch?v=ZrOaFknL88Q

heres a vid explaining it.There are more vids on him and it seems like a really promising procedure.

Where is it available ? i know it is Greece so im assuming it is in Canada and USA . Im from Australia so i dont if is avaliable.

another vid https://www.youtube.com/watch?v=0HA1SLYV2X0

So has anyone done this or know anything about?

I was diagnosed with Keratoconus 11 years ago. When I was first diagnosed I saw an optometrist that barely knew what he was doing when it came to hard lenses. After six months of trying to get me into a right fit he was never able to so I gave up on that. I should have looked for another optometrist, but I can’t change the past.

Fast forward 11 years later. My right eye his coned so much most people can see it. it’s uncorrectable with glasses. I don’t even know if hard lenses will fix my right eye.

My left eye is in much much better shape. It’s a perfect candidate for corneal cross-linking. I did have this scheduled for two months from now. After getting a new job and new insurance they had to move the surgery to this Friday. So that it would be covered under insurance and won’t have to pay out-of-pocket. The optometrist that I see is one of the only ones that does corneal cross-linking in my state, and they do not except my new insurance.

Honestly stressed out about it my wife is out of town and doesn’t fly by until the late evening of Friday. I’ve got family in town that’s going to help me and watch my kids. Planning on just coming home and sleeping as much as I possibly can for the two days post op.

So fortunate to be in England and have the NHS staff couldn’t of done more to calm me down (quite a pansy with eye related stuff )

Surgery went well (uncomfortable and weird sensation but that’s about it , had 80s music playing in the background so Rick Ashley accompanied my surgery )

Got home felt ok , then the numbing drops wore off! Pain was horrible for quite a few hours / rest of the day. Alternating between Ibuprofen and paracetamol as well as the eye drops and felt better towards the evening and actually managed to have a pretty good nights sleep.

Woke up this morning and feeling better not really a constant pain ( defo still uncomfortable )

Main question really is can I expect the pain to come back ? Obviously can’t keep popping pain killers so hoping I’m over the worst of it possibly ?

Thank you all !

I wanted to ask has anyone been diagnosed with Keratoconus and have you had the CXL treatment and how was your experience. Did it affect your study or your work and for how long?

I 've been diagnosed with Keratoconus eye disease about a month ago. Basically, Keratoconus is an eye disease that affects the structure of the cornea, resulting in loss of vision.

I went to the hospital for a regular eye check up to get new glasses, as I noticed my vision was comparably worse from what it was a year ago. However, I was shocked to learn that I had a disease that could severely affect my eye if not treated.

They told me about the CXL (Collagen cross linking) treatment that could halt the progression of keratoconus but it is not a cure. I went to Tilganga where I did Corneal topography and found out that my left was affected more than my right eye. I had the CXL treatment done on my right eye, and procedure was alot painful and uncomfortable than I had imagined. Right after the procedure I had a major headache. After that it was painful for the few days. Right now my left eye's vision is absolutely terrible. The docs says it will take up to 2 or more months for the cornea to completely stabilize and vision to improve. The treatment is also need to be done on my right eye and I am not looking forward to that.

Hi all, I'm 25 and a year ago I was diagnosed with keratoconus. As far as I was told, my case is not as serious and my vision has been deteriorating so much in past year (I'm still using same glasses from more or less 4 years ago). This is just for context.

The first specialist suggested to only perform cross linking on my right eye and then see how the condition progresses on my left eye and decide then. The reason for that is because she said the right eye is a little worse (my sight there is quite bad, while my left eye sight is pretty fine even without glasses).

Then covid started and I set aside this topic. And recently I decided to ask for a second opinion, and the second specialist said that the keratoconus is more or less the same on both eyes and the procedure would be to insert intra corneal rings in both eyes and after that perform cross linking.

So should I maybe see a third specialist? What are your experiences with intra corneal rings? I read around past posts and some say they are not worth it, some say they even helped improve vision, and others even removed it due to halos. So I hope you understand why I'm uncertain here.

I had CXL in both eyes two years ago. I went to my 2nd post-cxl annual check up last week and was told that my left eye had progressed and that I might need to have corneal cross linking a second time. My right eye remains stable.

This has come as a shock to me because I hadn’t noticed any deterioration in my vision in my left eye and generally felt like the cxl had been a success. Afterall the success rate 5 years after the surgery is 95%!

Has anyone in here had CXL for a second time? I really don’t want to have to go through it again as I was in excruciating pain for 2 days afterwards and I couldn’t open my eyes for several days. The pain killers didn’t help much.

After frequent reviews , doctor has suggested c3r for my left eye. He was asking me to choose the injection (probably) for the procedure between indian or imported . I don't know what would be the difference between both . If anyone has already faced this ,pls help me out here .

Cost for indian - 30k rupees

Cost for imported - 40k rupees

I recently got diagnosed with Keratoconus and want to get CXL to stop it from getting worse. It would be nice if I could shop around as the treatment is a bit pricey, but so far I've only come across one clinic which offers it: Sapia Tower Eye Clinic.

Really curious to hear from anyone who's had this treatment in Tokyo. Where did you get it, how much did you pay and what were the results like?

Please see the below link. What are your thoughts?

https://pubmed.ncbi.nlm.nih.gov/18811121/

Unfortunately I can’t afford a corneal rings implantation. And my health insurance only pays for Cross-linking operations. Is it ok to do the CXL and after 2 years implant the corneal rings ?

many of the new scleral lens designs are enabling keratoconus patients to achieve excellent vision and comfort, even those post corneal cross-linking!

What is Keratoconus?

https://preview.redd.it/28w7wzsnoke31.jpg?width=400&format=pjpg&auto=webp&s=e9ea51b1877a5f651fba81af089861222ff8c29d

Keratoconus is a progressive disease of the outer transparent layer of the eye ball (cornea) affecting young adults mostly in their twenties. It is characterized by Progressive thinning of the normally round cornea causing it to bulge forward and assume a cone like shape. This irregularity in the cornea results in the formation of a distorted image of objects on the retina & gives rise to Blurred vision. It generally affects both eyes but can also occur unilaterally.

What are the symptoms & signs of keratoconus?

https://preview.redd.it/8f1powiooke31.jpg?width=200&format=pjpg&auto=webp&s=42c836ca1b5d7fe7502b8223548eb2d4a9ec13b8

Keratoconus is diagnosed usually on routine eye examination by the eye doctor. Keratoconus causes myopia or nearsightedness & astigmatism. The patient experiences frequent change in glasses prescription with fluctuation in vision. Some patients also have glare & sensitivity to light especially during night.

In advanced stage of Keratoconus, corrective prescription glasses do not help the patient to see clearly and they have to switch to using hard or semi-soft contact lenses.

Your eye doctor practitioner can diagnose early stage of keratoconus after a detailed eye examination which includes Retinoscopy, Slit lamp examination and sophisticated tests like Topography (Corneal Mapping) to check the shape and curvature of cornea & Pachymetry to determine the thickness of the cornea.

Suspect Keratoconus when:

• A late teen or young adult myope is no longer correctable to 20 / 20 at the phoropter
• There is a change in astigmatism. (cylindrical power)
• There is a change in axis of astigmatism.
• Frequent change in eye glass power.

Tags = Keratoconus treatment in India, Keratoconus specialist in India, Keratoconus Surgery In Mumbai, Best keratoconus hospital In India, [Keratoconus surgeon in Mumbai](http://www.keratoconusindia.in/keratoconus-te

Here is Aetna's policy regarding collagen cross-linkage (CPT code 0402T):

> "Aetna considers epithelium-off photochemical collagen cross-linkage using riboflavin and ultraviolet A medically necessary for keratoconus and keratectasia. Photochemical collagen cross-linkage is considered experimental and investigational for all other indications because its effectiveness for other indications has not been established. Epithelium-on (transepithelial) collagen cross-linkage is considered experimental and investigational for keratoconus, keratectasia, and all other indications. Performance of photochemical collagen cross-llinkage in combination with other procedures (CXL-plus) (e.g., intrastromal corneal ring segments, PRK or phakic intra-ocular lens implantation) is considered experimental and investigational."

We are not sure if there is any other insurance company covering crosslinking for keratoconus. Please reach out to your insurance and let us know if they have similar policy and consider crosslinking medically necessary for keratoconus.

Curry was diagnosed with Keratoconus, but I assume it is very mild since he is able to wear contact lenses (the type is not specified) to correct his blurry vision.

Although he can correct with contact lenses right now, if he does not get a procedure known as "corneal cross linking" done, his vision will get progressively worse. Some might say to just "wear glasses lol!" but that's not how Keratoconus works.

His cornea will be bulging out like a hernia, which causes distorted vision, to the point where things are just flat out blurry, not just too far to see.

He probably already knows this since he has access to the top doctors, but just putting that out there!

I want to get it done next month.

Cost 4,000 GBP but it was worth it. In the UK I would have had to wait for a corneal transplant and my vision would have deteriorated. It's much worse in my right eye, I get like a glow and double vision around things. My left eye isn't nearly as bad so it gets corrected. Worst thing was the pain post op, it was the worst pain I've ever experienced. I had one eye done first then another a few months later. I have 20/20 vision with glasses and -2 without. Occasionally I get headaches. When I squint the bluriness and double vision goes away.

I’m 23 and have recently been given RGP lenses for my Keratoconus. I don’t mind the feeling of grit in my eye and the burning but it feels like my eyesights not even improved with them on.

I was wondering how good is this procedure as I only have it in my right eye and it’s a very early stage! With work providing bupa private healthcare as a taxable benefit I am seriously considering getting this done. Does it enable you to not need lenses?

So I got cxl epi off done and ended up getting an infection and had to take a bunch of anti infection eye drops for a while, and this was a few months ago and now I'm stuck with what I was told is a permanent scar in my eye ? And the only way to fix it is getting a corneal transplant? :(

I'm really sad, does anyone have any advice or anything helpful I should know?

Here is a good, if somewhat dated, comparison of epi-off versus epi-on CXL: http://www.keratoconus.com/resources/cross+linking+epi+off.pdf

If you want another resource for epi-on CXL, take a look at: http://www.cxlusa.com/

Hi guys,

I've been referred to liverpool hospital for corneal cross-linking and the doctors said it's best if we get it done in both eyes in one go. is this something to go ahead with or is it more advisable to go with one eye at a time. Slighty worried about this procedure as it's come so fast

It has been two months after epi-off CXL and I still have noticeable grade 1 hazing in my eye. My corneal thickness is normal at 550 microns and my KC is considered mild.

I'd like to know:

- why is it happening

- what can I do to mitigate it

- what I shouldn't do to make it permanent

I've been given a lot of sometimes conflicting information on why hazing occurs:

- Others on a keratoconus Facebook group have said their haze has disappeared in two weeks.

- My surgeon said 3% of CXL patients develop permanent corneal haze.

- He said the hazing occurs because even after the surgery, cross-linking is still going on. Cross-linking naturally occurs especially in the presence of sunlight. He said haze normally peaks at 1 month, plateaus, then gets clearer afterwards.

- This paper says that hazing might be due to the immediate loss of keratocytes after CXL and the resulting slow repopulation.

- Since keratocytes require Vitamin C to create collagen, I figure that Vitamin C supplements would be good, but people on the KC Facebook group say their doctors told them NOT to take Vitamin C. What gives?

- I was given ophthalmic prednisolone drops to decrease hazing and inflammation, but two months post-CXL why would I still have inflammation and how would prednisolone decrease haze?

Insurance coverage for Corneal Cross-Linking (CXL) in the United States is a hodge podge, and is likely to continue that way for some years, even though the Avedro epi-off CXL received FDA approval in 2016. This article explains why:

https://www.eyeworld.org/crosslinking-paperwork-clearing-confusion

Some insurers have an enlightened view. This is from Aetna's published policy titled "Corneal Remodeling":

“Collagen Cross-Linking for Keratoconus: Aetna considers epithelium-off photochemical collagen cross-linkage using riboflavin and ultraviolet A medically necessary for keratoconus and keratectasia. Photochemical collagen cross-linkage is considered experimental and investigational for all other indications because its effectiveness for other indications has not been established. Epithelium-on (transepithelial) collagen cross-linkage is considered experimental and investigational for keratoconus, keratectasia, and all other indications. Performance of photochemical collagen cross-linkage in combination with other procedures (CXL-plus) (e.g., intrastromal corneal ring segments, PRK or phakic intraocular lens implantation) is considered experimental and investigational.”

http://www.aetna.com/cpb/medical/data/1_99/0023.html accessed 20 March 2017.

But many insurers do not share Aetna's view. It is going to take a lot of work to get the insurers to accept that CXL is a medically necessary treatment that is the standard of care for KC. Avedro has set up its Avedro Reimbursement Customer Hub (ARCH) Program to help push for reimbursement by insurers:

http://avedro.com/en-us/medical-professionals/arch/

I would suggest that KC patients in the U.S. who are CXL candidates and who have commercial insurance, vigorously pursue their appeal rights to help push the insurers forward with regard to CXL coverage. This is not about CXL, but here is a story to provide inspiration:

http://jacksonville.com/news/metro/2010-08-04/story/patient-overcomes-aetnas-rejections-her-eye-saving-surgery

Sadly, fighting for insurance coverage for CXL in the U.S. may be a bigger battle than your KC. But at the time I was diagnosed, insurance coverage for contact lenses for KC was unheard of. So things do move forward. You may or may not benefit from fighting for CXL coverage, but somebody will some day.

Medical Degree (MD), University of Crete

PhD in refractive surgery, University of Crete under the supervision of Prof Pallikaris Ioannis (the founder of LASIK)

Cornea fellowship, Bascom Palmer Eye Institute, Miami

1. https://www.researchgate.net/profile/Vasilios_Diakonis
2. https://www.ncbi.nlm.nih.gov/pubmed/?term=diakonis

Will be stopping back periodically to answer your questions

Kind Regards,

Vasilios F. Diakonis MD PhD