keraflex

[Lynn White]

a43

JUst to say I have seen your post and will answer soon.... However, I am at the GSLS (Global Specialty Lenses) conference in Las Vegas at the moment and am catching up in between lectures and so on.

Just wanted to ask - have you tried soft lenses for keratoconus, like KeraSoft. These may certainly help post procedure as well.

I'll get back to you when I can on your queries..

Lynn

[liam82]

Sorry to read that Liam.

Forgive me if you've gone through this all before, but have you done the round of alternate lens types in addition to RGPs ? And also, now that you've got the crosslinking out the way, do you know if your cornea is up to having some sort of additional follow-up procedure e.g. LASIK ? (it needs to be stable and have a reasonable amount of thickness left).

Cheers

Chris

Thanks for asking, I appreciate it.

Not thought of lasik much, the place i went to,to have my cross linking done,specialises in laser eye surgery so I guess if it was possible- they'd probably have mentioned.
Thanks for mentioning it though, as its something I'll look into more now and ask about! I'd just automatically assumed it a was a no no with KC.

Last time I saw them, they were considering implanting a contact lens (though i didnt really like the sound of it), but something or other in my eye is slightly to shallow (thats literally the only word i remember was shallow!).

I skipped rgps as the first couple of sets i had caused me utter agony. We tried several hybrid lenses but they made the vision worse, and have moved onto clearkone which also doesnt really help. Its creating a really bad splitting/double vision effect.

So im just getting really frustrated. I'd like to feel like improvement was coming,rather than the crushing dissappointment of having to wait another 3 weeks for a lens that doesnt work.
I just want to be able to watch tv, play xbox, go to the cinema and watch in comfort ...simple things

The odd thing is the vision in my left eye isnt that awful, as the cross linking i had done has really brought the stigmatism down and has gained me several lines on an eye chart.

The fella whos mentioned in the daily mail, has been doing keraflex for almost a year now- it would be interesting to hear his experiences of the technique. I imagine he mustve done a fair few patients now.

[a43]

a43

JUst to say I have seen your post and will answer soon.... However, I am at the GSLS (Global Specialty Lenses) conference in Las Vegas at the moment and am catching up in between lectures and so on.

Just wanted to ask - have you tried soft lenses for keratoconus, like KeraSoft. These may certainly help post procedure as well.

I'll get back to you when I can on your queries..

Lynn

I have not. I was examining alternatives to RGP contacts earlier this summer, KeraSoft in particular, but my optician was a little hesitant - he is fond of RGP contacts and has had great success with them in the past and was not entirely convinced by what he had read about silicon hydrogel lenses so far. He is approaching retirement and while having a reputation for being very good with KC, he might just have become a little set in his ways at this point in his career, I don't know. He also mentioned that they are quite significantly more expensive. Either way, we intended to test some alternatives this autumn after I had first visited my opthamologist for a check-up and also to determine if regular crosslinking might be an option. The opthamologist in turn sent me down to Umeå to have another opthamologist do the required tests, and he in turn told me about KXL and asked if I wanted to have professor Behndig look at my data. I agreed, they called me back and told me I was a very good candidate for KXL and asked if I wanted to give it a shot, and here I am today.

Feel no pressure, answer whenever you have time. After all, professor Behndig will be able to answer most of it in just 10 hours from now. I feel I've mostly made these posts as stress relief anyway.

[a43]

Hello again.

It's been a few days now, and while it is still too early to talk about results, this is what my experience of the procedure and recovery has been so far.

After a few tests and pictures taken I underwent the keraflex procedure at around 11.30 or something on Friday. As expected it took only a few minutes and was basically painless, only mildly uncomfortable. Professor Behndig had a look at it and said the initial results were looking good. With three hours to go until the crosslinking I went to the hospital restaurant to have a bite to eat.

About 45 minutes to an hour after the procedure the local anaesthesia started fading and pain was setting in. Initially it wasn't too bad, but i ended up spending about 2 hours lying on a couch with sunglasses and my arm over my eyes, wiping away a continuous stream of tear fluid. The last ten minutes before the crosslinking were some of the slowest in my life.

At 14.30 it was finally time. I got some more anaesthetic eye drops but I was still in quite some pain and the removal of the corneal epithelium was particularly unpleasant. It was not excruciating, but certainly not painless. I would like to mention that I have a history of limited response to local anaesthesia and someone else going through this might very well not feel a thing. Either way, the procedure was quick. Professor Behndig had another look with whatever the relevant instruments are called and said everything looked very very good.

I was given some painkillers, one pill of codeine/paracetamol and one with diclofenac to take then and there and five more of each to take over the next two days. I also got some anaesthetic eye drops but I was told to not use them too much as they could slow down the healing process. Finally I got a prescription for antibiotic eye drops.

Pain was pretty bad now and wasn't getting any better. Waiting for my turn in the brightly lit hospital drug store to get the eye drops before I could finally get in the car for the 1.5 hour drive home (I wasn't driving, naturally) was awful even with the sunglasses on.

About an hour after the procedure I'm finally on my way home, but the painkillers aren't working. With an hour or so of travel still left I pop another of each pill. Only when I finally get home at around 17.00 they start to kick in. I feed my cats and go to bed, falling asleep nearly instantly.

Five or six hours later I wake up, in pain. I take the pills but I refrain from using the anaesthetic eye drops, feeling they didn't help much anyway. This time the pills work and I fall asleep again in what feels like a fairly short time. Another six hours and it's time to repeat the procedure.

I get up at 10 or something Saturday morning and now the pain isn't too bad at all. I keep waiting for it to come back as the pills wear out, but in fact it keeps diminishing. I am still swollen and sore around the eyes and a little sensitive to light, but I get up and get some food, read on the computer a little and then go back to bed to read on my kindle. Vision still extremely blurry so I was making do with my left eye. After a few hours, pain was returning a little again but it wasn't too bad.

I basically spent Saturday and Sunday in bed reading, falling asleep, waking up, reading, sleeping, etc. Pain and swelling was steadily decreasing - by now it was more irritated than painful and the soreness and swelling of the eyelids and occasional watering of the eye was bothering me more. I took the last two doses of pain pills before going to bed on Saturday and Sunday night despite not really needing them. I never used the anaesthetic eye drops at all.



It is now 11.40 on Monday, almost exactly 3 days since the first procedure. Save for very infrequent and quite mild pangs, the pain is gone. The swelling is almost down, irritation is minimal, the eye doesn't water any more. Vision in the treated eye is as expected still very poor and foggy, but with a more myopic rather than refracted character. If the fog clears a bit, acuity will probably be somewhat comparable to what it was while wearing an RGP contact before. Mind though, this doesn't mean much as it was still very poor.

[Lynn White]

Hi a43

I am back now..

It is really hard to answer you realistically. I have seen people at your level of short-sightedness regress back after the procedure. I have also heard that the accelerated KXL is not always successful in "holding" the KeraFlex changes (this was feedback from a CXL conference). But every person is an individual and this may not apply to you.

So what I'm looking for is something like "most patients can at least manage with glasses or soft contacts post-KXL" or "it's common that advanced cases will still need RGP contacts" or "it varies to such an extent that out of people with equally advanced KC, some have achieved 20-20 vision and some have had little to no improvement at all after 12 months" or "in patients with KC stage III (or whatever) it has been unusual to see more than such-and-such level improvement" or something like that.

Frankly, there are not enough patients who have had this procedure to even make the generalisations you ask for. I have only seen a few patients, so I cannot make this judgement call at all. Even if I said I had seen excellent results after one year, I could not guarantee this would the case after 2-3 years.

I can confidently talk about epi off normal CXL because I have been following patients through who had it done 8 years ago.

I am not trying to be difficult but as I, and others have said on this thread, if you choose an experimental procedure, you simply cannot get the assurances you ask for, as the follow up has not been done and one cannot project forward in time. There is no such thing as "It is common..." with a new procedure.

The difficulty is that I really understand your issues and I wish I could offer you information. However, we professionals have no more idea than you the answers to your questions.

Lynn

[a43]

Thank you for your reply. I had expected an answer along those lines, so I am not disappointed by it at all. I knew before getting the procedure done that there could be no guarantees, especially regarding long term effects. I can see how it appears that I am looking for assurance, but really it is more trying to get a better grasp of the spectrum of short term results that have been observed so far. Either way, I accept that the only way to sate my curiosity is to actually wait and see what happens now that I have gone through with it. After all, those are the only results that matter anyway.

As I've said before, barring any outright negative effects, at worst I have suffered a loss of the equivalent of maybe 50 Euro and a day or two of pain. With vision in that eye being as bad as it was already, I probably wouldn't even notice it if it got slightly worse. Regardless of the eventual outcome I will at the very least have contributed something to keratoconus research.

I will continue to post occasionally about my experience - even if whatever results I will arrive at in the end should not be used by others to form expectations of their own, I am sure there is some interest in what it is like going through the procedure and rehabilitation.


Here are some thoughts I have so far:

It's been five days now and my eyelid is still a little swollen and I am still a little sore from the lid speculum, but it is only a mild inconvenience. It is probably completely back to normal by tomorrow. Watering of the eye has stopped. The eye feels a little dry and itchy but I have been adamant in not rubbing it. Some or much of the dryness is probably due to environmental factors rather than the procedure. I still get the occasional and very very brief pangs of pain. They are sharp but not that intense and do not bother me much. I hope this is normal and not indicative of any complication, but I am ascribing it to the continuing changes in the cornea.

Unlike some pictures of others I have seen, I have no visible scarring as far as I can tell. My eye looks completely normal.

The fogginess of the first couple of days seems to have disappeared, but with my severe myopia everything is of course still very blurry. For the same reasons I can't really tell how much the cornea is fluctuating. It does feel a bit like the KC distortions are generally less severe than before though. Of course, this close to the procedure it doesn't mean anything one way or the other, but it would be interesting to be able to better observe the changes.

I have an appointment for a check-up with an ophthalmologist at the local hospital on the 3rd. I should know more about how the healing process is going after that.


More thoughts on the procedure:

From a personal point of view based on my experience so far, I would recommend against having both eyes done at the same time.
First of all, for me, the pain would have been too much. I don't want to exaggerate how painful it was, it was not unbearable and it did go away quick enough, but no thanks. One eye at a time is what I can handle.
Secondly, and this is perhaps stating the obvious, but if your KC is quite advanced or you have bad myopia in both eyes or something like that, going without contacts in both eyes for an extended period of time would be debilitating and frustrating. With one decent eye I can still read, watch TV, use the computer and go about my daily business without too much trouble. Your mileage may vary depending on your baseline condition, but knowing that results are not guaranteed and that it takes a long time for the cornea to stabilize after the procedure I think anyone who does both eyes at the same time should be prepared for the possibility of a very tough time.


I hope someone finds this interesting, and please, forgive my tendencies of over-verbosity

[Anne Klepacz]

Many thanks A43, for your detailed accounts of your experience (no need to apologise for 'over-verbosity' as I'm sure everyone is finding your posts interesting and informative!) I hope you get the improvement you're looking for - do let us know how things progress.
Anne

[a43]

One week post-procedure. Had the first check-up with a specialist nurse at the local hospital today. The cornea has healed beautifully. I was told to continue with the antibiotic eye drops until Tuesday (4 more days) just in case. As expected it is way too early to see any results, so no news there. No date is set yet, but within a month or two I'll go down to Umeå for an examination by professor Behndig.

The eye feels fine now, the pangs of pain I've mentioned are gone. Perhaps a tiny bit of a swollen/pressurised feeling. Could be my imagination, could be simply from the strain of using it as I can't really see much due to the myopia. Like I said before, the myopia largely prevents me from observing any effects of the changes of the cornea, but it does appear that (very) short range acuity has significantly improved. As it was pointless, I never really bothered trying to read without contacts before but as far as I can remember I could not read at all, at any range, with the naked left eye alone before the treatment. Right now, most text of common size is really quite clear up to perhaps 8 cm or so using only that eye, but becomes unreadable only a couple of centimetres further away. Primarily because of blur rather than ghosting, so I guess that is where the myopia kicks in. 8 cm might not sound like much, but compared to zero it's quite significant. A lot can and will change for good or bad in the coming weeks and months, but it is still interesting to observe this.

I am waiting for a reply from professor Behndig about the possibility of fitting a regular soft lens just to try to mitigate the myopia a bit for the time being as I think it will help a little with the strain on the overcompensating right eye, depth perception and perspective. My idea is that I could buy a regular contact for maybe one month at a time with a visit to my optician in between. I don't know how much the corneal fluctuations affect the underlying myopia and if it would be meaningful to try.

I also asked him a question about training. I train in Brazilian Jiu-Jitsu, a martial art similar to wrestling or judo for those not familiar with it. The nature of the training comes with the inherent risk of the occasional accidental eye poke, the hem of the uniform brushing against the eye, or ending up in a position where some body part or other rubs against the outside of the eye. There is of course also the increased risk of infection with such an activity. With this in mind I wanted to know when it would be safe to return to training. I asked the specialist nurse I saw today as well and he said that while the cornea will be somewhat weakened for a few weeks, it would probably be OK to get back to training in another week, but I should be a bit careful. With the cornea healed, infection shouldn't be a significant risk either. As I was sending professor Behndig an email anyway I figured I might as well ask him too so we'll see what he says.

[liam82]

Thanks for the update, please keep them coming:)

[al69]

This thread has been very interesting and a43 your posts are most informative and nice to see im not the only one who does marital arts ( jujitsu guy myself but pure selfdefence stuff not the brazilian style).Oh the joys to be able to practice on the mats with decent vision and actually see whats happening in clarity rather than the constant blur without my lens's in would be a dream.

Im still in the stages of getting lens fitment right and already fed up with losing them when they randomly fall out like today whilst out on my bike.At least im not paying for them as ive had loads fall out !

Reading lyns posts makes it quite apparent how experimental it all is at present and considering the costs i just cant afford the risks that go with it at present.

Keep up the diary it makes for fascinating reading for fellow KC sufferers and i thank you for those posts.