UK Keratoconus Self-Help and Support Association

Hi there,

I've been lurking on this forum for a while, trying to keep abreast of the latest technology whilst analysing my own situation. I feel like I'm now reaching the point where I need to look at surgery.

I was originally diagnoses with KC as a teenager, and have it far worse in the right than I do in the left. With my left eye, I am able to read with glasses on, but my right eye requires a hybrid contact. Now, my right eye appears to have been on the move for the past couple of years. My clinic at the hospital has been increasing the curvature of the lens as the hybrid wasn't sitting correct. However, a second scan that I had done seems to indicate that almost nothing has changed at all. In fact, the minimum corneal thickness appears to have increased! The machines used to take the readings have in fact changed, but if you were to read the topography numbers almost all the readings are within 1mm of each other, which appears extremely odd considering the lens difficulties I've been having. It looks like the eye hasn't changed at all, and the person that took the topography scans seemed to agree.

Despite this, my clinician has said that the next step would be RGPs, which I am keen to avoid, since I have already tried these and they were not workable with my eyes. I'm keen to stay on the hybrids/softs, and so am finally looking at getting an operation to halt any progression. My minimum thickness seems to be 503, with the central average being 534 (and outside this it get very high - up to 600)

I have been reading with interest about the Athens Protocol (Guided PRK with crosslinking), and have been reading that Dr. Kanellopoulos is the world expert on this procedure. However, I have also read that Dr Cummings at the Wellington in Dublin is also an expert.
1. My first question is, are the results from both favourable? I have read a number of positives from the Kanellopoulos side of things, but I haven't read much in the way of testimonials for Mr Cummings for this particular procedure. I would rather see the best, but have to consider costs, etc.
2. Crosslinking has been in use for several years now, and long term indications seem to point toward the condition being halted in the majority of cases. But is there any long term results from where PRK was also used on the same day as the crosslinking, or is Athens still too new for there to be any long term results?
3. I have heard someone mention about infrared PRK. How would this differ from the normal PRK used, and are there any published reports of this being used with Kerataconus yet in Athens protocol?
4. I have also read about an procedure called Mini A.S.R.K that claims some very positive results, but there appears to be next to no information regarding it. Is this worth looking into? Is there a reason for the radio silence? I'm mainly leaning towards the Athen's protocol, but would like to hear if anyone has any direct experience with Mini ASRK.
5. If I was to go for the Athen's protocol, how long would I likely need to spend in the location of the surgery? I'm currently based in Scotland, and would need to travel to either DUblin or Greece and presumably stay there for a while. Also, how many follow ups could I likely expect, and how soon after?
6. Also, my NHS clinic has not given me much confidence. Although the people that deal with me are lovely, they have only given my eyes two topography scans in 10 years, and both of these have been at my request. And it is always the contact lens clinician I see - never the opthamologist.
Is this normal?
Is it possible to get seen at a different NHS clinic? (Can't afford private really). My original hospital in the South of England was excellent, and I'm pretty sure I was scanned each year there. I would have thought that the topography scans would be important for fitting the lenses.
7. I'm concerned that the hybrid could be affecting my cornea, as the day after wearing them my vision feels completely distorted and 'tight' in that eye. Should I be worried here? It's not something I've really experienced with previous lenses (I moved to hybrids a few months after my first topography scan about a year and a half ago). All in all, I have found the hybrids to be very inconsistent and short lived.


Hope that's not too much to ask in the one go, and I hope some of you may be able to help me. It's hard to know when to jump ship.

Thanks.

Hi Davros,

I'm a bit similar, though you have way more thickness than me, my bad eye is ~350! I have been over to see Dr Cummings, initially to see about Keraflex for my bad eye. Never got a procedure in the end but I can say he was very honest.

The unfortunate thing is currently most KC procedures have to be private for now. Can also can agree some hospitals here (Scotland) aren't as good as down south (used to live in Bristol). They pretty much aren't interested at my local. Sometimes I get the impression they don't know that much about it.

I'll try to reply more fully in a bit.

Cheers,
Andrew

I think I read somewhere that the greek doctor performed on a minimal thickness of 350, but I can't remember which op it was that was undertaken.

With regards to my hospital, I really don't want to come across as ungrateful when talking about the treatment I've had, as, like I say, the people I deal with are lovely. The issue, I suppose, comes in the comparison with previous health services, and what's clearly a more advanced service. Having keratoconus means that getting my minimal thickness measured regularly is really important, as it indicates what kind of surgery I can get. Due to this, you'd think there would be a topography scan booked as soon as movement was suspected. I'm fortunate to have such a thick cornea to start with I think - I remember the clinician being quite surprised when the cornea was first measured.