Elective Treatments

[jayuk]

Hari

Thanks for that!

So from that link it does show that the VA increase can be quite notable from a patient perspective.....and its also interested to know that realistically KC patients can have the treatment even at advanced stages (assuming a 300um thickness is present).

From what you say about the clinic, I do think that DR L needs to collate and represent the data to present to those who have concerns on the procedure. Whilst I can understand his comments and the fact that its pretty pictures and graphs....I think its the actual history and the data they want presented.......but like you say....his door is open!

Another Question for you...what happes to the cornea if/once the KC progresses post treatment and how would that interfere/affect the scarring caused by the incisions? if at all it does?.... Has yours increased at all?...

J

[GarethB]

Hari,

The decision that surgery such as Ark or C3R is considerd too risky cam from the people who would actually perform the operation.

OK all this is based on theory however if they have doubts they must be really vaild. They have mu utmost respect for considering my case and giving a straight answer rather than just taking my money regardless.

[Sajeev]

Did Dr Lombardi or Dr abbondonza say doing Ark on you Gareth is risky? The options are very limited once your have had a transplant i think... but have they look at your eyes at all?

[GarethB]

They never looked at my eyes, but did have a topography and a full breakdown of how my KC, lens/glasses prescriptions and grafts have behaved since 1989 which my specialist says are about as comprehensive as his notes.

But yes post graft the options are somewhat limited which is why despite being pro graft I reinforce the point it is last resort treatment.

[Sajeev]

I've discussed post graft options with the leading Dr and good friend who is doing crosslinking, he said he would do crosslinking post-graft, but its very new the thinking on this... so if you can wait ....wait!

Ark... well Dr Lombadri wants people to learn and for people to visit him after that, you need to be strong willed too, as its sometimes done in stages and you have to wait for a period of time which is different for everyone. There could be a lot of travel back and forth too. If you allow the "process" to finish then thats when the final results arrive. Its not a "push button" method.

I spoke to two incisional surgery experianced Drs both who i know very well. They did not dismiss Ark out of hand at all after i explained the detail to them, they understood what was involved and are due to me, in touch with Dr Lombadri.

The earlier the better... To some people these "new" treatments are new because its new to them ... but in fact they are "old" treatments to others!

There are no publication of results on to the mainstream with ARk. I did see an article on ark in an Anglo-Italian Magazine. After it had appeared transplant surgeons in Italy got very upset...

Best

[rosemary johnson]

Re pilot's licences: AIUI, one of the flying "rules" is that if you fly in contacts, you must have a pair of glasses to hand at all times to pop on if your contacts drop out. For the KC pepole who depend on their lenses because they can't see with specs, this is of course impossible....

Re C3R: I'm not at all surprised that none of the post-C3R patients haven't had a graft in 16 years! - but does that tell us anything.
AIUI, C3R is best done on eyes inthe early stages of KC - and I've heard reports of careful selection of those accepted for the process.
NOw, other figures suggest that about 10% of people with KC get to the graft stage "eventually".
What proportion of people with early stages KC, such as go for C3R, might one expect to have a graft int he enxt 16 years?
Far less than 10%, certainly. 1%, maybe? 0,5%?? ANyone any idea?
0.5% woul dbe 5 in 1000 - and given these are "average" figures with a fair bit of variation, 0 in 1000 would be nothing out of the ordinary for that expected figure, given normal variation.
I'm not saying C3R doesn't do good stuff; just that the figure cited doesn't prove it.

About AARK and minARK..... well now.
NOt so terribly many years ago,"they" used to induce hydrops in peple with KC, deliberately, working on the theory that the tissue post hydrops contained scar tissue that was stronger and "stiffer" than before, and that this was beneficial.
They don't do that (not in so many words) any more.
In other words, the procedure was discredited and dropped out of use.
ANyone know any history behind this? - how and when and why the process got discredited, whether it was stopped by decree or just dropped out of use?
Now there is ARK and miniARK - which seem to work on the same principles of inducing the formation of scar tissue to "stiffen" the cornea.
What's the diference? - greater control of the placing?? DOing it little by little??

Maybe if ARk is such a good idea, then the original version, of inducing a hydrops, wasn't such a bad idea, and we should stock up on ibuprofen and go back to that?
No, I jest...... I think!


But it does occur to me to wonder whether opposition or disinteret in ARK/miniARk is not based on hostility to anything new, but to the idea of "We tried that, it wasn't a good idea, and it " - if you'll pardon the expression! - " went out with the ark"?
Rosemary

[Sajeev]

Hi Rose!

They select people for crosslinking who are progressing, so that they know if the progression has stoped or not, and it has and in many cases some reversal of their KC has been seen... the treatment is widely available.

Who done the induced hydrops before? I know Hari and of course Dr Lombadri would like to know. Can you pass the details?

I got a letter to say they used RK (not ARK) in the UK but could not match the italians with their mini-ark... of course not.... as the two are different!!!!!!!!!!!!

To me Dr lombadri is a clever surgeon and not all can be helped by him, certain "cones" will do very well and vision will be got back with out the need for any other correction, its a manual highly skilled craft not many want to learn or have the time to....

[John Smith]

As I understand it, the business of inducing hydrops was in fact the standard treatment for KC. Indeed, it is true that for some people, their vision is better post-hydrops than it was before.

Common practice as it was, it's something that I would certainly describe as barbaric!

Steven Tuft from Moorfields even showed us some photos and old textbook diagrams of this at the AGM!

[Sajeev]

Very intering this... Why did it die out? John...

Do you think its because it did not work too good? (i know Ark is done differently)... or was it that the "trade died" after laser become popular? (when laser is not a good idea in KC?) or even because contact lens became more popular in general?

Best

[Hari Navarro]

Hi all,

OK all this is based on theory however if they have doubts they must be really vaild. They have mu utmost respect for considering my case and giving a straight answer rather than just taking my money regardless.

I'm sure they do have your best interests at heart Gareth, but again I wonder how they can pass judgement on a technique that they only know by its association to RK.
Its like dismissing a certain varient form of graft when all you have is data regarding PK. There are certain truths that they both share but they are also many differences and it these differences that the Lombardi Clinic contends makes ARK-mini ARK a viable option in the fight against KC.
The truth is that only two doctors in the world actively operate using mini ark... some others may rarely use other varients of RK. But the version about which I speak is solely preformed in Rome.

But it does occur to me to wonder whether opposition or disinteret in ARK/miniARk is not based on hostility to anything new, but to the idea of "We tried that, it wasn't a good idea, and it " - if you'll pardon the expression! - " went out with the ark"?

Again, ARK or mini ARK on keratoconus has not been tried or even given the chance to be discredited by any medical establishment outside of Italy. Induced hydrops may share a base theory with ARK but the carefully structured scar formation that it requires far exceeds any random tissue creation that hydrops may develop.
Nobody else has ever tried it to find out if it was or wasnt a good idea... (certain doctors, including a leading italian surgeon have attempted this exact procedure (mini a.r.k)... none of them ever learnt the procedure from Prof Lombardi. They prefered to attempt it using only their own experience as validation. They promptly met with failure and subsequently denouced Lombardi and the technique as non valid).
As you know I am not a doctor and all this science baffles me... all I can say is that I can see. I dont really know why I can but I hope it lasts a very long time.

Hari