UK Keratoconus Self-Help and Support Association

Hi all!

I had epi-off CXL done in my left eye on May 29th, 2017 - it's still very fresh. The first few days were absolutely awful, nearly everything was a complete blur, then it slowly started to clear up. The problem is, apparently it's stopped clearing up... I had my week-after checkup and according to the doctors, everything is perfectly normal but I'm getting desperate. The ghosting is so, so much worse than it was and the vision in my left eye is much blurrier. I'm so scared I messed up. I am already intensely suicidal due to loud intrusive tinnitus and my vision being worse is really pushing me to get it over with - my ears are bad, my eyes are bad, why bother living?

Please tell me that this gets better, or that this can be fixed with contact lenses... I'm currently wearing glasses but they don't do anything for my left eye anymore. Please, I just need to know that we can improve this, it's horrible

Dear aquana,

I feel your pain; I went though it myself. Of all 4 surgeries I had, cross-linking was the worst in regards to pain! It was so painful for 2-3 days I think, although my memory is not strong as it's been almost 5 years. In fact, cross-linking was the only treatment where I felt pain, so be thankful, the worst is behind you! This treatment is very important, as it should halt your keratoconus progression, and that's very important because from now on your vision could only get better and not worst! Well, in regards to the outcome of the treatment - I don't remember much of a difference as my vision (in left eye, which had cross-linking) was very poor, so not that much noticeable difference, and after around 2 weeks I started wearing contact lens from prior to the surgery which was not a good idea as it probably caused me a scar (which healed eventually, thankfully), and with it I could see almost as well, although a bit cloudy. Well, doctor said that the treatment flattened my cornea and helped it, although I didn't notice much of a difference apart from the fact that I couldn't squint to see as I did before.

You are currently only day 12 of the treatment and it's WAY too early to determine the visual outcome. You probably worry too much over your healing process, and that's normal. Your epithelium was scraped and the healing is long. When doctors say 3-6 months for complete heal, they know what they say. The symptoms you describe could be caused by: dry eyes, corneal swelling (edema), haze bending the light coming through your cornea, central islands, epithelial defect, etc. These complications should resole within 3-6 months, with some slight minor improvements up to a year. I KNOW, because I had my epithelium scraped 3 times already, once because of CXL, and twice because of PRK. That being said, it might as well be surgically induced astigmatism, and also, you should be reminded that cross-linking procedure is done for halting the disease, and not in order to improve the visual acuity, and that's only a side benefit of the treatment.

And now that progression the disease is halted, cheer up! From now on it only should get better. I know, because before the treatment I couldn't make out people faces, and spectacles did nothing to my vision. Today I drive and watch TV without spectacles, contact lenses or any other aid.

In regards,
DigiKera.

Thank you! With my ears screaming at me 24/7 AND my vision all over the place, it's very hard to be optimistic... I haven't seen improvement for days now, the ghosting makes computer screens really hard to read (which is what I do for both a living and fun) and just... gah. It feels hopeless. The starburst/nova distortions were bad enough before the surgery (I only have glasses as I was misdiagnosed for five years, never had the opportunity to try contacts) and now they're even worse...

So basically you're saying there's hope?

Dear sir,

The GASH (glare, arcing, starbursts and halos) visual complications of keratoconus are horrible! First off, remind yourself that you are only in the early recovery phase of CXL, so they should diminish partially over time. If post-healing the GASH are still severe, then you should discuss treatment options with your consultant. Those refractive errors are attributed to High Order Aberrations (HOA) and can be treated using ring segments (e.g. Intacs), topography-guided PRK, micro incisions, and the other various methods. You might as well try to manage them using contact lenses, perhaps even soft ones, such as the KeraSoft IC.

In regards,
DigiKera.

I don't even know if all that stuff is available here, hah... I suppose I'll have to wait first. Thank you!

Where are you located?

Hungary. We're not a very rich country, hah.

There are many forum members located Hungary. You can use the "search" section to find information from Hungary. You may as well try to search and check with other patients located in your country, as I'm pretty sure both CXL and ring segments are widespread today, including in Hungary.

That's a good idea. I might do that. Thank you!