keraflex

[metallic201001]

Hi Marc,

really I feel with you. I am struggeling myself with this Fu***** disease. I lost my job because of it.
Normally I work the whole day on the computer and I need 90-100% vision.

Can you still work now?
I think now you must wait, also if it is hard, maybe 3 months and get some Topographies of your eyes.
It is really strange that the crosslinking didn´t work.

Then you should have a new re appointment with your doctor in 20-20 and see what he tells you. Maybe he can offer you re-treatment for free with the normal Crosslinking (30min) not KXL. But I would recommend you Dr. Cummings from WEC in Dublin for a second opinion.

Regards

Andi

[jhon]

that,s why i asked before about accelerated crosslinking
i don,t know but i feel that accelerated crosslinking not effective as ordinary crosslinking

anyway i think you should do as Andi said
best hope for you my friend

[liam82]

I'd like to make a few comments:

The KeraFlex procedure is in two parts: The KeraFlex microwave procedure and CXL OR acccelerated CXL, called KXL. The KeraFlex is intended to reshape the cornea and the cross linking is intended to freeze this reshaping into place and hold it there. In this respect, it is rather similar to having INTACS inserted with CXL done afterwards to hold the shape. The difference is, KeraFlex is not reversible whilst INTACs can be removed at later date if necessary.

CXL or KXL procedures involve removal of the epithelial layer, which accounts for the pain for the first day or two. This affects some people more than others. CXL with epi off also causes significant corneal shape fluctuation in the first few weeks. This can cause your vision to get better and/or WORSE in the weeks and months after the procedure. This is without the effects of KeraFlex added in to the mix, which are INTENDED to reshape your cornea and so will cause vision fluctations as it is taking effect.. The vision Marc is experiencing at the moment may well be nothing more than a temporary change in refraction or it may be due to other causes. However, none of us can know what is happening - only his surgeon will know that.

What no-one can do is judge whether this, or any other procedure, is giving good OR bad results from reports made on a forum such as this. It worries me equally when people get really hopeful when they see excited reports about a new procedure or when people get upset at bad reports.

As I have said before on this thread, KeraFlex is very similar to CK (Conductive Keratoplasty). Experience over the years has shown that some people get reasonably long lasting effects from CK (maybe a small percentage of the effect is present at ten years) , for the majority, it wears off in a couple of years and for a minority, it wears off very quickly indeed. This "wearing off effect" is being tackled by cross linking but it may be of interest that other remoulding methods combined with CXL also show a wearing off problem. Trials are still ongoing with Ortho K and CXL and some studies show that even with CXL, the reshaping effect can wear off within a month or so. http://www.ortho-k.it/documents/Calossi%20ESCRS%202008.pdf.

The truth is that CXL continues its "work" over a long period of time. I have followed people up after CXL for several years now and found that improvements continue to occur after 3 or 4 years. In one patient, who had CXL in one eye only. and wore soft lenses post op, the CXL cornea improved in shape dramatically whilst the non CXL eye progressed. There was definitely some moulding effect going on from the soft lenses, but it only had a significant effect in the eye with CXL. I have seen this in other patients as well, but in some cases, when lens wear was discontinued, the corneal shape went "off" again.

We have all much to learn about reshaping and CXL but the one thing I am sure of, is that none of this is an instant fix. If anyone is thinking you simply walk into a surgery, get a procedure done and then that's it, you are totally fixed for several years at least, then this is simply not going to happen. This is because epi OFF CXL is not instant and it does not confer stability. While its doing its work, corneal shape changes can mean your vision can get worse as well as better for periods of time.

Epi ON CXL is less invasive and does not cause as much fluctuation but getting the Riboflavin through the epithelium effectively is the challenge. Work is still ongoing in this area.

Monitoring, comparing and evaluating these two methods takes time - years in fact. As does the overall effect of KeraFlex and KXL. Some people here have been quoting that its a fix for ten years. Well so it might, but we wont know for sure until AFTER TEN YEARS, will we? For any new procedure such as this, experts can only make calculated guesses drawn from past experiences. Much of the CK work has been done on normal corneas. Keratoconic corneas have different metabolisms and each eye can behave in a unique fashion - even with the same person.

New procedures like this are very exciting for all of us. However, one has to remember that with any new procedure, experience is gained from the people who have it done first. Improvements are developed from failures. No new procedure or technology jumps into the world fully developed.

If you, as a patient, jump on the bandwagon immediately, then you have to face the risks that the long term effects are completely unknown. Guessed at yes, but factually unknown. If you wait until these are known, then you may well have missed the window of opportunity to have it done at all.

All my work is done with keratoconic/irregular cornea patients and I do fully understand the emotional turmoil that goes with this condition. Everyone hopes for a miracle cure. KeraFlex may be the "one" but we do not know this yet. By its very nature, and that of CXL/KXL, it cannot guarantee everyone instant, stable vision, so if you do go ahead with this, you have to consider the effects on work and family life if there are long periods where you cannot see well enough to drive or work.

I hope this post is seen as a voice of caution. I am not condemning KeraFlex. No-one would be happier than I if it proved to be the answer to KC we have all been waiting for. The truth is, we will not know FOR SURE how this procedure works or lasts for several more years yet.

Lynn

This, is a wonderful post

I was only diagnosed with KC about 7 months ago, but the biggest thing about it is the worry,furstration and search for a magic bullet.

I had cxl done about 7 weeks ago, and because im impatient i got really wound up when my vision went worse for a bit. It started off blurry got alot better, then got abit worse, but at the moment has really improved again.

Its a very up and down recovery period from the procedure, which kind of fits with the condition itself.

Hopefully keraflex will turn out, with a bit more refinement and research to be the thing we all desperately want.

[Marctec]

Hi Marc,

really I feel with you. I am struggeling myself with this Fu***** disease. I lost my job because of it.
Normally I work the whole day on the computer and I need 90-100% vision.

Can you still work now?
I think now you must wait, also if it is hard, maybe 3 months and get some Topographies of your eyes.
It is really strange that the crosslinking didn´t work.

Then you should have a new re appointment with your doctor in 20-20 and see what he tells you. Maybe he can offer you re-treatment for free with the normal Crosslinking (30min) not KXL. But I would recommend you Dr. Cummings from WEC in Dublin for a second opinion.

Regards

Andi

Hi friend, yes, I have too much problems because I work with a computer all the day, and it's very hard to survive with fu***** keratoconus in both eyes.

I think this not will be solved, now is stopped and don't think so that normal Crosslinking work too.
i made a crosslinking in both eyes 2 month before the op for this reason, for have a hard cornea, so I made 1 crosslinking normal and 1 accelerated crosslinking after the op. So it's not enough i think not.

Avedro or others must find another solution for stabilize cornea after this job. Keraflex works, but not the stabilization in next weeks.

Now I don't wanna do anymore minimum in one year or more... Guys, it's a very painful postoperatory. And accelerated CXL just NO WORDS....

[Lynn White]

Hi Liam!

Thanks for your words....!

Marctec...

I am now getting a little confused... you are saying you got cross linking in both eyes 2 months before you had KeraFlex plus crosslinking? If this is correct, then it is no wonder you are not stable right now! You would not be stable from the first round of CXL never mind the second!

You say "Avedro or others must find another solution for stabilisation after KeraFlex".... I am really sorry, but it is not as simple as that. New procedures take a really long time to develop and as I said before, it takes years to fully understand what the long term effects are.

For yourself, if you have really had 2 lots of crosslinking, then it will take weeks or even months before you stabilise. You really cannot judge whether the cross linking and KeraFlex has worked or not at this point in time as your currently "worse" vision may well be temporary.

For anyone else thinking about having Cross Linking done twice... it does NOT speed up stabilisation, rather the reverse.

Lynn

[Marctec]

Well, so all doctors I talked before are mistaken.

[Marctec]

I said 2 month, but real time was 3-4 month

[jhon]

i want to say that i read in facebook from period but i can,t remember where
that someone asked one of the avedro doctor about crosslinking before keraflex and the doctor said

cross-linking prior to the microwave treatment does reduce the beneficial effect

but i don,t know for sure if this right or not

[Lynn White]

Hi Marctec,

I was really commenting on the stability issue rather than the "working" issue. I was surprised you had had two procedures so close together but now you are saying it was more like 3-4 months?

My experiences are as an optometrist following people up who have had crosslinking and trying to get them settled vision and, as I have said before, some patients can take months before vision starts to improve with cross linking and it can go worse before it gets better.

Lynn

[harker]

Lynn - in your experience, do patients with higher acuity before CXL recover faster or slower?

I have bad ghosting with specs, but I'm still 20/20 in the right eye and 20/30 in the left. I'm having CXL done in a couple of weeks (left eye first) and I was wondering if being a specs wearer means I should be able to get some decent corrected vision out of the eye a little faster.

Also, most discussion of CXL fluctuation seems to focus on acuity. Can I expect my ghosts to fluctuate in shape or size while its settling?