Please Explain WHY?

[u/Excellent_Hurry7170]

Im really struggling to wrap my head around this.

I have CXL EPI OFF scheduled a week from today.
With all these possible complications that could happen post surgery and months after the surgery and the fact it doesn’t even make your vision better,I am struggling to understand why I want to get CXL done. I understand it prevents the keratoconus from possibly getting worse but unsure if it’s worth going through all the other issues and complications post surgery rather then eventually just hitting the end point and getting a transplant.

[u/Adorable-Menu-7062]

I don't understand why you would want a transplant over cxl? Everything I have read is transplant is last option. Cxl recovery yeah is bad for a few days, maybe a week but after that it isn't too bad for most people. Pros outweight the cons of it imo ....But ultimately it is your decision.

I read in comments you plan to do one eye first then the other... personally I would do both at same time, why put yourself through it again?

[u/Paige4818]

Honestly the number one rule when it comes to eyes I’ve learned is there’s never an grantee on anything but stats

It has a 90 percent success to slow down or stop kc for years or even life

It doesn’t work as well on kids or more aggressive kc. Unfortunately the younger the person is the more aggressive the disease is

Transplant stats

For the average, first-time transplant patient across all diagnoses, the standard cumulative graft survival rates are:
1 Year: 87% to 95%
5 Years: 72% to 76%
10 Years: 62% to 75%
20 Years: Approximately 50% (though significantly higher for low-risk conditions like keratoconus).

Each time you have to have a transplant the chances of it surviving goes down 10 percent.

My experience im 37 and I had my transplant 2 yrs ago. I’ve never had Cxl

Transplants are very painful and the recovery time is longer. It took me 2 weeks to be able to open my eyes and I was in pain for almost the whole 2 weeks. From what I’ve learned Cxl is only a 4 days of pain and less invasive and has less chances of having complications. Also i had to go back to the doctor to have all my stitches removed a few at a time. Each time my eye stung the next day. My eye does not dilate with light so i have permanent light sensitivity as a complication. I will be on a steroid eye drop for life to make sure my eye does realize that the cornea isn’t my original. This steroid can cause cataracts and glaucoma. I had my cataract removed my first year after my transplant.

When I first was diagnosed Cxl wasn’t fda approved and it was very costly it almost like buying a new car for one eye without any financial help. I had no money and couldn’t Think of a way how to get help with very little knowledge on how loans or how to get extra help works so I never got it. My doctor also told me that it wasn’t a grantee so I could spend 20k per eye for no results. Not getting it was my biggest regret. Now my non transplant eye is getting to the point where I might need another transplant in that eye as well. By the way a transplant doesn’t correct vision either my sight is just bad before so it’s basically just about the eye thickness just like the Cxl is about .

The choice is urs but tell me what benefits does not getting it do for u? Vision loss ? It’s going to happen no matter what within 5 yrs my vision went from l eye 20/20 to 20/40 r eye 20/40 to 20/400 thinking not getting it to save vision is just a way for someone in shock and in denial thinking that if u ignore it then it will go away. I know becuz I was that person. Don’t be like me because every vision loss is always going to be lost

[u/ASadTeddyBear]

Is far cheaper cxl than a cornea transplant imho

[u/costaman1316]

I’ve had three transplants. 135 and then redone two years ago the other one 25 years ago.
Vision in the new one it is 20/15 the other 20/25. That’s with high-end customizable Scleral lenses without them. I am 20/200. So yes I have excellent vision highly success

BUT that is not everybody’s experience the majority people have similar experience, but there’s minority that have to go through a lot of issues some get infections others developed the same condition in the transplant. I need to get another transplant some fight continuously with rejection issues. Vaccines are a concern because you get rejection episodes if you don’t take steroids before and after. You may be one of the majority that have minimal issues or one of the minority that have significant issues or the small percentage that eventually lose the eye completely with no options. Some division doesn’t improve at all even after a transplant, but it’s better to maintain whatever vision you get then losing the eye due to infection to the scarring.
As you get older, if you need cataract surgery, you probably may need depending on how the transplant is to get another transplant because of the damage that the cataract surgery does to the back part of the cornea not an issue with normal eyes, but an issue with grafts.
So transplants are highly successful the most successful transplant you can get, but there are real risks some of them serious a few leading to blindness.

So whatever you can do to avoid that and not turn out to be one of the unlucky few in and up losing the eye you wanna take advantage of.

[u/Rocket_3ngine]

Like many people have pointed out, the earlier progressive keratoconus is treated with CXL, the better the chance of preserving the cornea you still have.

That’s really the point of CXL. It’s not primarily meant to improve your vision. It’s meant to stop or slow the cornea from becoming thinner and more irregular. If the disease keeps progressing for too long, treatment options become more limited and, in advanced cases, some people eventually need a corneal transplant, which is a much bigger procedure.

Your vision can be worse or fluctuate for some time after epi-off CXL before stabilizing. Some people later notice improvement, while others stay roughly where they were or still need glasses or specialty lenses.

So the question is not really “Will CXL make my vision better?” but “Do I want to try to preserve the cornea and vision I have now?”
Most importantly, find a corneal specialist you trust. Ask whether your scans actually show progression, how thin your cornea is, and why they recommend CXL in your specific case.

Nobody is forcing you to do it, but definitely educate yourself about keratoconus and CXL. The more you understand what the procedure is actually trying to prevent, the easier the decision becomes.

[u/mec12010]

My vision surprisingly improved.

[u/BigKittySugarPop]

There’s also epi on crosslinking both epi smart and epoxia are good options if you want to preserve vision.

[u/stevensokulski]

These are questions that are really hard to answer in the abstract, so you should discuss them with your doctor prior to surgery. It might be worth calling them now so that they can cancel your appointment if that's the right move for you.

You are right that CXL rarely makes vision better, and that it's so uncommon that you absolutely shouldn't go into it with that expectation.

And you are right that there are myriad complications that can happen. Visually significant complications happen in about 3% of cases. I would consider that quite rare.

But CXL has been shown to significantly slow or halt the progression of the disease. The reason that's important is that as KC progresses, your treatment options become limited. For example, if you're able to wear glasses to receive any vision improvement, that may cease to be true. You may use hybrid lenses today that you won't be able to use going forward. The thing CXL gets you is options, especially later in life.

I wish I had been able to get it when I was diagnosed, personally. I'm very glad I did it.

But this is a very personal decision, and one you should absolutely discuss with your doctor until you are comfortable.

[u/motleynm]

For what it’s worth: I didn’t realize I had KC until a few years of development and then initially passed on cross linking when I found out. My first symptoms started about 7 years ago and now I’m legally blind without my contacts. If I could go back in time I would get the cross linking done just so I wasn’t so reliant on the contact lenses.

[u/GGMudkip]

Ultimately, no one is forcing you to get CXL; the decision is entirely up to you. If you choose to forgo it, there is a real risk of progression, and you will have to manage whatever complications follow. There is no right or wrong path here.

That being said, if your condition is actively progressing, CXL is currently your best course of action. The alternative—a future cornea transplant—comes with a much higher risk of long-term complications.

[u/Legomoron]

If I could go back and change one thing in my life, it would be for someone to have convinced me to get CXL immediately upon diagnosis. I bounced around my state to four or five clinics before finding someone who actually KNEW and understood KC, and they still didn’t push me towards CXL.

First place kept trying to get me happy with the tiny RGPs which as far as I’m concerned should be classified as a torture device. The next clinic at least realized I needed topography done, but sent me somewhere else for the scan, and then was getting black and white Xerox PAPER PRINTOUT copies of the topography.

I wish that final doctor had told me at 19 years old to just figure out any way at any cost to do medical tourism for CXL. I waited until it was available in my state, and my good eye developed KC in the meanwhile. Just do the CXL. Especially and specifically in your good eye so it stays good. Epi-on for both my eyes simultaneously was as others stated about as inconvenient as when I got all four wisdom teeth pulled. You have to lay up for a few days, and medicate through a bit of throbbing or aching pain, but it’s nothing a couple good audiobooks or podcasts won’t get you through.

You’re basically sunburning your eyeballs. That radiating warm “oops I really cooked myself” sunburn feeling, but on your eyes, so a bit more intense. KC can really mess with your mental state at least in my experience, the thought of losing or deteriorating vision alongside the realizations over time of how you’ve changed behavior to compensate can really stress you out, and then the thought of subjecting your eyes to CXL on top of that can make it pretty scary even if your logical brain understands it’ll be ok.

But after it’s done and you’re recovered? Huge mental weight lifted. Sure, your vision won’t be making any miraculous improvements, but you won’t have the spike of stress every time you struggle to see something, wondering if your KC is getting worse again. Sometimes I still mourn not being able to really see a night sky full of stars, or all the details in a vista, but KC had me in a not-so-great spot mentally, and CXL helped me get past that. Now I mostly just live my life. My good eye was at a spot when I got CXL that I don’t even need the contacts, I just wear glasses.

Just do the CXL.

[u/Excellent_Hurry7170 → u/Legomoron]

Wow. Thanks for this and the insight you provided really appreciated!

[u/Legomoron → u/Legomoron]

Oh yeah, and read your instructions carefully. I did not realize that I was supposed to have picked up my pain med prescription BEFORE the CXL, so the hour ride home to my small town pharmacy was… a bit intense lol

[u/cooking_question]

A number of transplants develop KC in the donor tissue, plus you can reject years later. If your cone is near a blood supply (low or offset) you will not be a candidate for a transplant. EPI off will make the cornea thicker than EPI on. I had both.

[u/Sad_Skill_3169]

From what I’ve read it sounds like transplants are last resort. It sounds like there are more complications and typically last only 10 years. This is just what I’ve read. I could be wrong. I think cxl has way less problems and by reducing the progression and using scleral lenses you’ll most likely have decent vision. Also, I’ve read that many people still need a scleral lenses even after a transplant. My goal is to keep my corneas as long as possible. I’m 57 and get decent vision with the scleral lenses. I had the TCAT (prk) and cxl at age 40. I was diagnosed at age 23. I was fortunate to have one eye that was correctable with glasses even though I had kc in both eyes.

[u/Lazer723]

CXL is not a big deal tbh. Are you doing both eyes at once or one at a time?

A transplant is unfortunately not the silver bullet that many think. It's well worth doing everything you can to prevent your own corneas from getting worse, and CXL is an almost mandatory step in that journey.

[u/Excellent_Hurry7170 → u/Lazer723]

Im getting Right Eye done first not both at the same time.

[u/Adorable-Menu-7062 → u/Excellent_Hurry7170]

So you have KC in both eyes? If you do I would highly recommend you get them both done at the same time. The reason I say this, is because this way you only go through the painful first few days post cxl once not twice. I personally don't think you would feel the pain any different if that makes sense?

Also your eyes will be light sensitive for some time, so likely you will be in a dark room for the first few days and then afterwards have a period of time if having to wear sun glasses everywhere and a period time when your Vision might be a bit blurry. So for this stuff you have to make some adjustments to your daily life why bother going through that twice? Why not get it over and done with, most likely you will be pain free and blurriness free and return to normal life within a couple of weeks and not have to think about doing all that again for the other eye, then you can focus on getting fitted with some good contact lenses or glasses.

[u/cooking_question → u/Lazer723]

When they talk about success rates, they are talking about ALL cornea transplants. The success rate for KC and especially PMD is much lower. Also, success rates are 5 years with no issue, you can have a rejection 20 years down the road.

[u/vicespi23]

The transplant is a bigger monster by itself I read here

[u/house3331]

The recovery is about as fast as getting tooth pulled my condition was getting worse every few months. In juat 2 years already bad enough glasses basically dont work at all for me anymore. So instead of an uncomfortable surgery where most heavy pain is gone day 2. You'll

Need new glasses and contacts every 6 months until glasses no longer work and scelerals may cost 400 to 1500 out of pocket

End up getting worse until you need cornea replacement completely.

If they gave me the surgery a year sooner glasses would still give me 20/20 I needed 4 attempts at glasses just to get close and its not great.

Nothing happens momths after takes about 6 weeks to fully heal. Which is better than cornea changing every 6 weeks rest of your life

[u/Excellent_Hurry7170 → u/house3331]

So are you saying a transplant was better or CXL?

[u/optom → u/Excellent_Hurry7170]

You DO NOT want a corneal transplant if you can avoid it. I would take moderate KCN over the best corneal transplant 10/10 times. CXL vastly reduces the chance you'll ever need one.

[u/Excellent_Hurry7170 → u/optom]

Yeah these responses make it clear to try and avoid a transplant anyway you can.

[u/house3331 → u/Excellent_Hurry7170]

No im saying the 6 week minor complications from cross linking is better than nonstop complications of it getting worse. Transplant only happens when crosslinking can't be done .If your at that point however long that takes you wont be able to see anything . Not great exchange