Elective Treatments

[danlindley]

I just wondered, are there any elective treatments for KC? Is there i can ask for from my optician that will slow down KC?

Can you request any kind of treatment? Is there any laser eye surgery alternatives?

Any tips/tricks/links to posts would be useful...

Dan

[GarethB]

Hi Dan,

Laser surgery is a big no no for KC as this treatment thins the cornea further, the last thing you want ona thining cornea.

The only treatment that 'appears' to slow the progression of KC is known as C3R which strengthens the collegen crosslinking in the cornea. The results are very promising but the selesction criterea for the patients that took part was quite strict. The people who have had the treatment too is relativly small by clinical trial standards, mainly due to the rarity of KC. The post treatment follow up does not go beyond 4 years and even the pioneers of this treatment re unsure if top up treatments will be necessary and what the effects of repeated treatments would be long term.

Currently this is only available in the UK through private practacise and is very expensive. The results appear to take at least 3 months before full benefits are realised, possibly longer.

If yu search the site for C3R you will find lots of discussions on the subject.

[Hari Navarro]

Hi,
When I too was looking for an alternative I came across the ARK-mini ARK procedure. It worked for me.
It is a method that has had to repel more than its fair share of flak over the years (this is a surgeon based treatment and some of its core principles fly in the face of accepted keratoconus treatment ie: mini ark contends that the influx of fibrin following incisional surgury strengthens the weakened KC corneal matrix... popular medicine contridicts any invasive surgury on the already weakened corneal tissue.)
The fact is that ARK is a far from new option and has been used for going on 20 years. 'Relaxing incisions' are commomly used post transplant, ARK uses a reduced version of this without having to go through the transplant.
Results vary from patient to patient as is the norm with any surgury, in my opinion its well worth checking out.
Try searching google for mini a.r.k ... also as has been mentioned the C-3R crosslinking method has been showing very good results.
Good luck,
Hari Navarro

[GarethB]

Remeber these two techneques are very new and the long term success is an unknown quantity so at this stage should only be considerd as a possibly long term management strategy just like lenses and grafts.

Ark/mini-Ark to the best of my knowledge is not available in the UK. To the best of my knowledge (Hari will correct me if I am wrong) ARK can not be reversed just like a graft can not be reversed once done.

Although C3R can not be reversed, it involves removing the top surface of the cornea over the KC and applying vitimin B12 drops with a co-enzyme that is activated using low level UV light. Therefore a lot less in vasive.

If you search Ark and mini-Ark you will see the debate we have had on this site.

[Hari Navarro]

What Gareth has said is very true, except for the fact that in ARK-mini ARK's case it is NOT a new treatment. It has, as I said, been around in various forms for years.
The problem lays in that it has very little in peer reviewed literature to back it up. Its success rests with the testimonys of its patients (and for many, esp. those in the medical field this is not enough). In my case I was not prepared to live with keratoconus untill the 'cure all' wonder treatment came along.
It is true as Gareth said that ARK is not reversible... also it should be noted that it in no way prohibits further graft surgery should it be needed.
The debate has indeed been long, both here and on various other forums. My stand point within all this has always been that ARK should at least be considered as an option... one of hopefully many to come.
It has shown very good results over the years... I just wonder why it is that it is not fully researched by the medical establishment that so easily dismisses it.
Also in C-3R's case there are a couple of different methods for delivering the riboflavin through the corneal surface. It is actually a very interesting procedure and I would fully recommend looking further into it.
But again, it has little in the way of long term result... but then long term contact lens wear results vary depending on who it is you ask.
At the end of the day its a personal decision, but one that has to be supplied with as much of the available data as possible.
Hari

[GarethB]

It is true as Gareth said that ARK is not reversible... also it should be noted that it in no way prohibits further graft surgery should it be needed.

Sorry Harri, I neglected to amke that clear, the same goes for C3R and intacts that these too in no way prohibit further graft surgery. However intacts can be reversed. Any reversal of C3R treatment is not by surgery, but by the KC not being stabalised but progressing further.

In addition to Harri's last paragraph, as with any treatment of KC due to its complex nature the results be it lenses, C3R, Ark, graft etc the results do vary from patient to patient and who you ask.

All we can do is share our experiences and the knowledge we gain so any decision regarding treatment we make is at least infomed based on the current available information.

[Sajeev]

You also neglected the fact that there are two methods of crosslinking. One, being the orginal and true version as it had been designed and developed to "work" with all the elements used for this to happen correctly, and also proven in studies to stop KC to date (five years and counting).

A one doctor in the US is doing Crosslinking which he calls C3R (you can elect to have this method as its ment to have quicker recovery and is being less painful... but there is a big but with this method!) he is not doing it as it was invented and that is by not removing the epithelium. With this method there has been patient reports of progression after the treatment.

In all the studies for the original method (of course) progression has stopped.

For many years there has been animal testing and thats why originial crosslinking (or frequantly called X linking) has been available to patients since 1998.

The developers of crosslinking beleive that the amount of transplants being done will be reduced, and if crosslinking is done early enough then it is possible for the patient involved not to need any correction at all (or usual soft lenses if caught later at diagnoses).

Crosslionking is being used in many countries in Europe and world wide (too many to list).

The next stage is to get crosslinking approved with the CE mark and there are various trails going on for that to happen, but at the moment its being used when a Dr thinks it should be used.

Mostly in Germany they are using crosslinking on younger patients as their KC has longer to run and so by using crosslinking progression can be cancelled out. No one has a crystal ball but its thought that KC progression can be "zapped" for a length of time of a decade or decades... time needs to laps to know no more on this. But there is insurance cover which will cover you for ten years for free if there is progression with the original method of crosslinking, as they are sure progression can be cancelled out for that period of time.

There is a lot of info. on the net on crosslinking for further reading. But watch our for the marketing for the other non-orginal crosslinking.

The only treatment thats known to stop KC to date is crosslinking which was developed in Switzerland and Germany, who are the pioneers.

All the best

[Andrew MacLean]

Still the message is 'take care' Your sight, if damaged by experimental treatments may not be recoverable.

Yet, if the treatments are effective, you may know a wonderful difference.

I'd say, never go through any treatment without consulting first with your consultant ophthalmologist. Her or his advice may be the best informed clinical judgement you have available.

Andrew

[Sajeev]

Yes consult your eye care provider with regards to anything you would like to do (in any case this will give them more knowledge of whats on offer!)... Also the trouble is finding one who knows about all the options and is suitably trained to advice you and also finding one who is not bias will be a hard task.

By the way crosslinking is concidered a routine and a regualar treatment by Drs who has been using this treatment for years over in Germany!

So its all down to where you happen to live and who you know as well...

[GarethB]

Small point is that any medical treatment needs to pass vareous medical ethics comittees and not always regulatory bodies.

CE mark is only applied to products so any new medical device used for treatment will need to gain this mark.

Initially when C3R the patient was given the choice of having the epithelial layer removed which takes longet to heel.

A regular poster here opted to have the epithelium ratained as they could not afford to have a long recovery period. The KC did regress, but eventually ceased and the KC start to get worse again. However it had the deired affect of buying the person time to allow the grafted eye heel to the point it could be corrected with glasses and allowing the C3R eye grafted.

The trials actually taking place at present are to determine what are the long term effects of such treatment and determining if it is replacement or complementary technique to current KC treatment startegies to name but a few.

Another thing worth pointing out is that what is determined as a medical succes may not be regarded by the patient as a succes.

What all of us have neglected to say is that these treatments pretty much reuquire our vision to be corrected with glasses or more often contacts. The aim of the treatment is to provide a corneal surface that is easier to correct the vision.