keraflex

[drink]

Keep them coming a43!! Very interesting stuff!

[a43]

Yesterday I went down to Umeå to have a check-up with Professor Behndig and it was pretty encouraging.

The cornea on the whole looked perfect in terms of healing and so forth. The astigmatism is nearly gone, it's down to about 0.6 - 1 diopter (he got a little bit different readings from different machines) if I remember correctly. The cornea has flattened with about 8 diopters from an original 56 I think he said. If the numbers don't make sense, it's because I got something mixed up or didn't remember correctly. He said my vision will keep improving for another 2 months or so as the cornea is still a little grey from the procedure. I guess that is the "fogginess" other people have described, I suppose it is the myopic blur that made me feel it was completely gone by now. Likewise, it is still a couple of months before it's meaningful to try to fit a new lens.

I asked it if was possible give a non-committal guess if I might be able to go back to regular contacts and he said MAYBE, or possibly a hybrid lens at least (hadn't actually heard about these before, I only knew of piggy-back lenses which felt like too much of a hassle) but at any rate a hard lens should be much less uncomfortable and easier to fit now.

As I've mention in the other posts, I still have very little to say about any improvements myself except from what I can see at extremely short ranges. Professor Behndig said there's nothing stopping me from trying to get the myopia corrected a bit with a regular lens in the meantime, but naturally suggested I go for something cheap as it will be temporary. Once I get that done, I might have more to say. I am meeting with my optician next week to see what we can do. I will try to remember getting my pre- and post-procedure readings from him too so I can post them.

As for training, there's nothing that should prevent me from going back to sparring again now that everything is healed up. An accidental eye poke is never good of course, but it shouldn't be any more dangerous than it is under any other circumstances.

So, in conclusion for this time, things are still encouraging and the outlook seems positive. As always keeping in mind that I can't know the long term effects for a few years still, but I guess it's safe to say now that the procedure as such went well. No complications and no adverse effects.




An interesting sidenote Professor Behndig mentioned when I was there was that earlier the calculations for how to apply the treatment were based on the patient's accompanying myopia, something he felt makes little sense as it would mean trying to compensate for every patient's shape of the eyeball. "In a case like yours, that would mean we'd have to microwave the eye until it was destroyed."

I have absolutely no idea if there is any correlation at all and I'm certainly not qualified to make any conclusions, but afterwards it got me thinking that maybe that would be a reason for some of the poorer results or outright failures that have been reported in the past. I remember someone earlier in this thread saying the procedure had failed and his cornea was somehow "burned".


I think I touched on it in some earlier post too, but I've always gotten the feeling that some of those describing disappointing results have been people who didn't have any or much myopia before they developed keratoconus, and if the keraflex treatment primarily improved the astigmatism but the myopia still remained they wouldn't experience it as a success as much as someone who has always had it. If their keratoconus wasn't all that advanced either they probably don't know how bad it can really get and how much it means to just be able to halt or improve that. I don't care if I'm still blind as a bat without glasses or (more likely) contacts after this; I've been for as long as I can remember. I'm only concerned with how much the additional problems caused by the keratoconus can be mitigated.

In case there is anyone here who had pretty good vision before they developed keratoconus, take it from me: Myopia isn't that hard to live with and can usually be corrected quite easily and effectively. Wearing glasses or regular contacts isn't that bad. Millions of people do every day. If you try a keratoconus treatment of any kind and (almost) all you have to deal with afterwards is some myopia, you should be really happy.

[andytraill]

Thanks for the updates a43. Keraflex is quite exciting really, recognising that it's still early for the whole technique. Your comment on the early calculations is pretty interesting too, suppose they are still perfecting the "doses"?

[dineshk]

thanks a43 for sharing ur keraflex experience.
8 diopters correction sounds great. but has ur vision improved.
I had cxl done in 2008 and use rosek lenses. if I wear glasses -4 (cyl) , i dont get perfect vision, but able to read news on TV, see people 20 meters.
with 8 D correction vision should help a lot once haze clears
pls update us on recovery, so thousands like me can decide on the treatment

[michaellpl]

This is a great topic! I'm a patient with KC and I've been thinking about keraflex ever since I was diagnosed. I really hope we will see some long term results as for today they are not really clear. I don't know if this has been shared before but a recent study from a german clinic shows that even though initial results after performing KXL are very good after 18 months patients keratoconus was deteriorating approaching the level of pre procedure results(slides below, 11 in particular)

http://www.paulig-augenklinik.de/sites/ ... raflex.pdf

[GerardPMD]

Wow! Thank you Michael for posting that link.

As someone who is still considering various treatment options, the results shown in that presentation make me want to stay away from Keraflex for now. The topographies shown look only marginally less steep after 18 months, and somewhat more complex/irregular than before. (Disclosure: I am not an expert and this is certainly not a statistical study; some of those on the forum who had this treatment may have far better results!)

[michaellpl]

the problem is that in the study there are only two patients after 18 months... one thing I wonder is whether you can just keep keraflexing every 2 years if the KC comes back to the "bad state". If you could then great, I think costs will come down to the Xlinking level or maybe twice that so I could manage to get a procedure every 2 years until they come up with something better...

[Lynn White]

Hi Michael

Thanks for that interesting link.

The regression shown here is very much like that for "CK" (Conductive Keratoplasty) which is a heat treatment of the cornea aimed at improving reading ability ion those that have presbyopia. That too wears off after a similar time.

Now CK can be repeated but as it is done on the periphery of the cornea, any build up of haze, scarring doesn't affect vision.

Keraflex lesions are more central and although they fade over time, there is no follow up available (as far as I am aware) of patients who have had this repeated several times.

Again, until we have more data no-one can tell how much vision changes over time. Of the two patients shown here, one is fairly stable over the 18 months and the other carries on changing over the first 3 months.

Its also clear that CXL is needed to hold the change in place, so you would also have to repeat that as well.

I'd also like to touch on the mention of pre-existing myopia being a possible cause of disappointment with results.As a professional, my criterion for a successful procedure of any kind related to KC would be that the person can rely on glasses for useful/good vision. In the end, this is what it comes down to; that a person has a back up to be able to see without contact lenses, just like anyone else. If you get perfect vision without any correction, then that is fantastic but its an unlikely outcome for most people with keratoconus at the moment. An added bonus would be that you can return to wearing disposable contact lenses, because your options are much wider than having to wear specialist lenses.

To see clearly in glasses requires a regular cornea. It doesn't matter how many dioptres a procedure does or does not reduce, if the cornea is still not regular and/or progression has not stopped, then there is still an issue.

It should be noted that procedures that are designed to "improve corneal shape so that contact lens fitting is made easier" may not actually do that - and this includes corneal grafts.

Therefore, whenever looking at any current or new procedure, think about what your own criteria are for a successful operation. What do you want out of it? What is the percentage likelihood you are going to get that?

I am just saying this to clarify that reducing corneal power does NOT necessarily equate with better quality of vision.

Lynn

[michaellpl]

one of the problems is that I believe there's a lot of customer data out there that Avedro and all of the other clinics apart from Cottbus are not sharing... And that is worrying because if they would get blockbuster results then it would be in their best interest to share it...

[munster]

Interesting read from the 1st UK Keraflex patient.

http://www.20-20visionperfection.co.uk/news/first-briton-to-have-keraflex-daily-mail/