New 'epi- on' cross linking techniques

[Samty]

fellow KC Sufferers,

I am a new forum member and I am trying to research the latest epi-on crosslinking procedures currently available. I don't have a scientific background and am finding it hard to work out what's available, how painful it is and how effective the new epi-on crosslinking procedures are.

As a bit of background to my own condition, I was diagnosed with Forme Fruste Keratoconus by Moorfieldo about 10 years ago after going in for a laser eye surgery consultation. The problem was, the consultant only told me that the irregualr astigmatism was a contraindication for laser surgery. He did not tell me what Keratoconus was or that it was a degenerative eye disease. Fast forward 10 years and I noticed that my Visual acuity had deteriorated rapidly and I admitted myself into A and E so that a proper eye surgeon would actually take a look at my prescription history and the note from my Moorfield consultation. It seems this was the only way to get anything done. I have now had epi off crosslinking which was successful except for the fact that I developed corneal neuralgia. This was not something I was warned about. I want to get my right eye crosslinked before I lose any more sight but am keen to avoid getting neuralgia in my right eye as well so I am looking into supposedly 'pain free' epi on procedures.

So far I have found three different types offered by three different surgeons that appear to be effective with varying degrees of pain:

Dr Brian Wachler - 'Holcomb C3-R' (USA)
David O'Brart - 'iontophoretic' (UK)
Dr Pinell- 'Paracel' ( Switzerland).

I would be really interested in hearing what people have to say about these procedures and if anyone has had it done and if so, how long ago.

[CrippsCorner]

Sorry to hear of your complication, that must be horrible. What actually caused it though? Has it be confirmed than epi-on would avoid this? I suffered severe corneal hazing in one of my eyes with epi-off but the other eye was perfect (same procedure)

There are always risks with these things unfortunately. I was reading recently about a new semi epi-off where they cut a ring out rather than the whole thing. Not sure when they'll start using it though.

[Samty]

Hi 'crippscorner',

Thank you for responding to my post. I am new here and basically in a bit of a panic compounded by the fact that I am still really quite angry that I wasn't told about my condition or that it went un-monitored for about 10 years. In the last two years since I started losing my vision, I have been trying to get on top of it all emotionally and intellectually. It 's so hard having to gamble with ones own eyes and basically quickly train ourselves up so that we can make informed decisions and navigate our way through different surgeons claims.

I find myself in a similar position to you and I may well take the risk of having epi- off crosslinking done on my good eye just to stop this whole thing going round and round in my head whilst all the while losing more and more vision. Indeed, it is your experience that crops up in my mind alot.

Regarding epi-on, so far, I haven't had a convincing response from Dr Brian's office regarding its effectiveness ( i.e. no independent data); I have not had a response at all from Dr Pinelli as yet; and Dr O'Brart's office has been very helpful and informative though he did say no epi-on procedure is pain free and it appears his technique is promising but not sure if its as effective as epi-off in the long term. I don't want to be having repeat procedures.

In my own case, I was very unfortunate to develop corneal pain after having epi-off in my LE in 2014. Dr Rosenthal ( formerly of Boston Centre for Sight) has come across this in two other patients who also had epi-off crosslinking. He says that in some cases the development of corneal neuralgia ( OCULOFACIAL PAIN) might be due to having a fibromyalgia phenotype which pre-disposes some to develop chronic pain conditions after eye surgery or trauma to the eye. My mum has fibro/ RA and I did tell the hospital about this prior to the surgery. In my case, to try and get rid of the pain , I had intensive acupuncture after the 'drugs not working' and it shifted so now I have more annoying pain rather than debilitating pain.

My BSCVA is 6/9 in each eye and I am now 42. Two years ago I had BSCVA of 6/5 and 6/6 so a bit of a shock. I also have high myopia - about -7 and am contact lens intolerant after having worn them for 10 years in my twenties.

Is the haze clearing up in your eye at all?

[Lia Williams]

I am still really quite angry that I wasn't told about my condition or that it went un-monitored for about 10 years.

Hi Samty, I understand your frustration in finding out that you have had a degenerative eye condition for ten years. But ten years ago I don't think it would have been unusual for one to not have had one's eye condition monitored apart from optician's eye tests. As you had excellent eyesight with glasses it would have been unlikely that your optician would have referred you to a hospital. There was very little a hospital could do; cross-linking was still new and was generally only considered for people under 35 whose eyesight was changing. Typically, but not always as you have found, keratoconus stablises as we get older as the corneas stiffen. Cross-linking procedures are designed to mimic the aging effect.

and am contact lens intolerant after having worn them for 10 years in my twenties.

Do have another try with contact lenses. In the last twenty years lots of new designs for contact lenses have been developed so a specialist contact lens optometrist may be able to find a lens that suits. I piggyback my RGPs with soft lenses and it works well. I could only wear my right lens for a hour before it felt like I had soap in my eye and I just had to remove the lens. The lens was a 'perfect fit', gave good vision but would go from being comfortable to intolerant within minutes. Piggybacking has solved this.

Lia

[Samty]

HI Lia,

Thank you for responding to my post.

Re: contact lenses:
I have been under the care of my local NHS contact lens clinic for the past 1.5 years. I have had one appointment and after trying some lenses they said they couldn't improve my sight. The corneal neuralgia in my LE also interferred with this process as I was in ALOT of pain at the time I saw them. They also said I had 'dry eye' which is why the lenses kept blurring up with 'stuff'. I am going to go back shortly to give it another go -its just a shame that appointments only seem to be offered every 6 months. Thanks for the pointer about piggy back lenses, I think I will bring this up as an option to try.

I guess I am focused on halting the progression of this disease because it is unusual for it to have progressed over the age of 40 and I find myself in the position of being relatively 'unique' but in a bad way

Samty

[CrippsCorner]

That's true regarding your age, I think my consultant would have point blank refused to operate on me if I was 10 years older. He did mention during one consultation that he would never 'recommend' CXL to anyone over 30... then again, I don't really feel confident this guy knew what he was talking about.

I would kick up a fuss at your hospital about being seen quicker. I'm not a confident person but I was tired of their bullshit and stormed in there demanding to speak to a manager... luckily I got through to someone good and can now basically request an appointment whenever I feel like it!

CXL *shouldn't* really be painful whether it is epi on or off really. I did have pain on the second one, but it seems that was unusual (and possibly part of the reason it had issues)

I think my haze has settled now. It's still there, and if I shut my other eye it seems like I'm looking at everything through a cloud... kind of hard to explain. Luckily the brain does learn to ignore this stuff so really what I'm left with most of the time is just pretty bad double vision. There is no documented experiences for corneal hazing after a period of 12 months, well not that I can find online anyway.