Keracatonus Cross Linking C3-R® Help!

[rosemary johnson]

I said: No-one is denying that there are - apparently - potential benefits of doing CXL....... no-one, least of all me, denies that people have benefitted from it so far.
Pepe said: Your operation was......
Excuse me! That is true but irrelevant, as it was not (mostly) the corena that went wrong; I had a very nasty adverse reaction to some of the drugs they used on me - and am now so sensitive I wouldn't be able to tolerate the eye drops used in a CXL process, even, were the KC to return in the graft. The operation could have been anything - it could have been to repair an injury from falling off a horse, for that matter. It is not always in the bits where the original focus was that the problems arise. Personally, I'd rather have worsened KC than what did happen; your mileage, as they say, may vary, and if you'd have prefered the whole raft knock-on medical problems and the brain damage in return for a bit better eyesight, that's your choice. Though I think you'd be disappointed by the vision that's actually resulted so far.
Lars said: 1/5 kcers will need grafts.....
Interesting; where does that figure come from? I've always heard it was more like 1/10. Maybe it varies in different parts of the world/country?
Rosemary

[pepepepe]

Just out of interest Rosemary, did you go in to your transplant surgery with the thought (from consultations/considerations from family and friends and your own etc) you will have more to gain than to lose ?

With friendly regards

[GarethB]

When I was at the hospital optoms confrence I was at the differnt optometrists were talking about trilaing the K3 lens on patients that had a history of lens intolerance and to see if they were a viable alternative to RGP lenses. It is for them to decide if they publish in the public domain or just internally within their hospital.

Where I have been involved we have looked at how far we can push the design due to the nature of my right eye so this is more a manufacturing test and as my corneas are sensitive to oxygen transfer we have looked at different lens thickness, too thin and it drapes too much and there is no room to put the corrective power on, too thick and I have oedema problems. Thing is the fitting kits used need to be the same thickness and the lens the patient will get due to hanges in optical properties. We have also evaluated lens wear duration.

Thing is each eye is different so what I report is in many way anecdotal. As you point out there is no finsih line in medicine same applies to most if not all areas of technology. You test what you can, but you only get the broadest feedback once you have a marketed product and any sound manufacturer is always looking at the customer feedback to see where they can improve the product. This might only be improved quality control so your TV lasts longer or improved technolgy that could make sound on a stereo crisper compared the the item when first launched.

From what I can gather the same is in medical devices too and this sometimes leads to a whole new prodcut. If anything was tested to the n'th degree before launch would be as technologically advanced as we are? Plus by spending so much time on research and development we might have the best there can be but at such a high price noone can afford it.

From the research I am involved with you have to be pragmatic and know when to stop so you can launch a prodcut but you are always looking at how you can make things better post launch to help stay ahead of the competition.

With the IC lens that has been mentioned we wnat to look into ways how we can keep the lens where it should be for my right eye which has extreme properties. We know it works well on a flat cornea (the case for my left eye) and is the case for some of the rarer types of KC, but it would be nice to have something that can go to the other extreme too. Some ideas have been discussed how this can be done best so there a good prospects of going from where I was 4 years ago of only being one len option for me, to 3 options. I already have a second.

I consider my self very lucky in that I have two management startegies regarding vision correction open too me as so many here have one or nothing at all. It is usually when you have absolutly nothing to loose based on current lens options or other surgery that grafts are selected as there is no return. 20 years ago I had the choice of lenses which I used until the cornea was so steep the lenses would just slip off straight away. My vision was changing on a daily bases, I would have alens fitting and collecte the lenses two weeks later. My vision would be slightly improved but due to the aggresiveness of KC I would need another set of lenses. After 9 months I had exhausted my lesn options, did A levels registered partially sighted and had my first graft a week after my final exam! A choice of graft or legally blind was the only option back then.

[lars]

I can not compare cxl with a new lens fitting, imho it is totally different.
I know I took a risk when making the decision of having cxl as with every procedure but k readings were constantly increasing, so I could not wait.
The only reason I posted here is because I think it's not the efficacy of the treatment that might keep someone from performing this but only
its long term side-effects.

@Rosemary: Wikipedia is the first site I read this (10-25% to be accurate).

[Lynn White]

I do think things are getting taken the wrong way here!

It was not my intention to say that no-one should try any treatment until x number of years had passed. In fact my remarks are being taken as the opposite to what I intended.

The original question was about will CXL cause cancer. Basically no-one can hand on heart say it won't because the treatment has not been going that long, so we don't know. ux2 quite reasonably said that UV light causes melanomas. It was a fair question and the likelihood is that no, it won't cause cancers because the level of UV exposure and the length of time you are exposed to it are so low as to make it highly unlikely. But no-one in this world could guarantee 100% that not one single person in the world would get it.

As far as CXL is concerned, I fit contact lenses to many patients post CXL and can attest to its benefits. As someone who has family members with KC, I would suggest it as an option after careful balancing of progression vs non progression, corneal thickness, current scarring and so on. Each case on its merits.I think my comments were being taken as me being against CXL which is not so, and if it were, why would I spend time creating a CXL Club to enable people to talk about it?

I have never said that contact lenses were a treatment - they are quite obviously NOT that - they merely aid vision. I only mentioned PMMA lenses as an example to show how problems can be found years later with something originally thought to be absolutely fine. Obviously this has confused the issue by inferring that Contacts are a treatment for KC, which they are NOT.

So if I take that back totally and perhaps say that to see how the passing of time changes outlook, just see how butter fares in medical terms. At one time, butter was regarded as a total no-no - dreadful for the heart etc etc and everyone was advised to go with unsaturated spreads. Years down the line, it is now thought butter is not that bad after all and that the margarines we all now eat are worse for us because the molecules they are made up of do not occur in nature. What we think now may change in the future but we can all only make decisions on the information available to us in the here and now.

KeraSoft lenses: to clear up this confusion - KeraSoft3 is NOT on trial. It is an established lens.

What Gareth is referring to is the trials I am conducting with advanced designs for irregular corneas. This is using the same material, but more complicated designs for more complicated corneas. As Gareth has interesting eyes from an optometry point of view (i.e. post graft but with some KC induced warpage as he says) I am trying out some designs on him - however, what may confuse this issue is that Gareth is also retrying the KeraSoft3 again as he has been concentrating on his RGP wear for a while. So some of his "trial" aspect is of a personal nature as to wearing times and comfort and that has nothing to do with any trials with KeraSoft Irregular Cornea lens, which has not yet been launched.

I hope that clears up a few misunderstandings!

Lynn

[rosemary johnson]

Lars: I think the wikipedia entry is probably based on figures not specifically UK-related.
Here, they tend to keep people in lenses and off the operating table as long as possible, whereas in other countries, they tend to opt for grafts at an easrly stage.
Rosemary

[rosemary johnson]

Just out of interest Rosemary, did you go in to your transplant surgery with the thought (from consultations/considerations from family and friends and your own etc) you will have more to gain than to lose ?

With friendly regards

SInce you ask....
At the time I booked in for the graft, I was thinking that, on the blanace of probabilities, I was probably likely to gain more than I lost.
This was, of course, thinking solely of the eye and the vision from it.
Looking back, I think the calculation I did at the time as flawed, in that I'd forgotten I was originally referred to the "medical" side about my photophobia, and when I was offered grafts instead, was too shocked to follow this through properly. So the pre-graft calculation did not properly factor in the chance that better focused light might also focus the pain from bright lights - so I might end up with wonderful visual acuity not be so light-sensitive I couldn't go out anywhere.
In fact, it has made the light sensitivity worse, though how much of a difference this will make remains to be seen.
With hindsight, the calculation was even more flawed, because I had never heard of the possibility I might end up with 6.5 vision with a new lens in, but that after only 2 hours the vision would be going all misty with haloes round any light source, and consequent limitations on lens wear time. From the point of view of having usale distance vision while out and about, 12 hours fuzzy vision when I wanted it has advantages over 2 hours surreally sharp vision that makes me feel dizzy!
In other words - at the time I thought that on the balance of probabilities it was the logical way to go - but the assessment was probably wrong.
That in terms of the eye.....
By the time of my pre-op appointment, I was concerned that a general anaesthetic was not safe - and two anaesthetists agreed I had valid concerns and it could be done under local. I had never heard of any adverse reaction like the one I in fact had - and nor, it seemed, had anyone at the hospital! - and had no idea anyone might administer steroids as part of a GA, let alone that they could have that effect. having discussed how the op under local would work with oth anaesthetists, by the time the surgeon waded in at 11th hour 59th minute to override us all, we were not allowed time to talk of possible risks, or weven how the process would work - I'd have said "NO way!" if we had, I'm sure! Unfortunately, I have a tendency to get very badly dehydrated very quickly, and was far too ill with the dehydration by then to be able to think straight - and probably ost other people in that state would have fainted long since.
I do not for one omnet believe I was in any legally competant state of health to be asked to consent to surgery, nor, in consequence, that the hospital have any legally valid form of consent. Needless to say, I will not have a GA ever again! - in fact, such are the drug hypersensitivities I've been left with it is quite likely it will never be safe to give me any sor tof operation ever again.
WIth an awful lo of hindsight, once we have (we think!) finally worked out what caused the worst of the problems, there were signs there had I or anyone known how to interpret them. Unfortunately, I did not have enough detailed knowledge on which to make a balance judgement of possible gains/losses - only the general feeling that "I/m being coerced into something I'm not convinced is safe".
Incidentally, the one thing I was sure of was that it would be extremely dangerous to have me conscious and under sedation - and flatly refused to allow that. In view of how things worked out, I reckon I was even more right than I knew!
There! - since you asked......
Rosemary

[pepepepe]

Rosemary sorry things aren't going your way, I send all my good will to you, I think its always the fault of the teacher not the pupil, the pupil being us and the teacher being the specialist, to be perfectly honest with my view, I hope they will have an answer for you.

On other points like, "no one can put their hand on their heart and say CXL is safe" well that is true of anything done to the cornea, even contacts put on them.

I could not find the word "melanomas" on this topic used before.

The official site and forum to CXL is here below in this link, its where CXL was invented, there is nothing anyone know which they don't

http://augen.uniklinikum-dresden.de/seite.asp?ID=154

Gareth, where I had CXL done in the UK CXL it is routine for them. Also we can't go by hear say, as once its worked out a lens is over rated, then quickly comes the next version as being "better" by saying it themselves who are after all selling them, which again when this new version turns out to be over hyped also, and just before people cotton on to this they bring out the next lens and so on. We need independently verified results, its the best way to know what the safety and efficiency of the contact lenses makers claims are. Other wise one thing could be is a lot of wasted time for the end user, when another lens may have done the trick. There are many who are "one trick ponys" we need an independent out-let with all the options, as many as it is possible, where it is not the case of pushing one contact lens manufacturer and their lenses.

[Andrew MacLean]

Actually, at least one prominent member of the forum travelled to Dresden to have CCCR (as it was then called). I think I am right in saying that he subsequently had a graft in the same eye.

Andrew

[pepepepe]

Yes I read that

two points

1) He was at the late end stage where a transplant was the only real option
2) He did not do the CXL (he did the unproved epi on as he wanted it against advice and with out the transporter also)

There are external reasons for a Transplant also, not just due to KC it self, like badly fitted RGP contact lenses, also ulcers, infections due to poor cleaning which can effect vision permanently (when we say risks, these are risks, but they can be avoid and also if caught early a full recovery can be made with may of the risks, its just good to be aware of them)