UK Keratoconus Self-Help and Support Association

Hi everyone,
My boyfriend has roughly stage 2 KC and I've made it one of my aims to try and help him as much as possible. I've read about the Mini ARK procedure performed by Prof Lombardi in Rome, Italy and am trying to find out more.
My boyfriend's specialist in London claims to be an expert in the disorder but had never heard of neither the procedure or Prof Lombardi... how can this be when Lombardi claims on his surgery's website (http://www.lombardieyeclinic.com) "...with an experience of thousands of refractive operations since 1980, I have been able to conceive (already since 1985) of this simple operation to resolve definitively (in 95% of cases) the keratoconus problems of types I, II and some selected cases of type III. This operation has proved itself, with the outcomes achieved over 15 years, able to reduce at least by 95% the need for corneal transplantations for keratoconus in the world. "
???
Also I understand that the operation is not performed in the US - why?? The treatment relies on manual precision and intricate and detailed examinations in order to determine where the incisions will be made... no room for specialists to blame a laser machine for any blunders! Is this why??
You all must know the high risks associated with corneal transplants, so taking this into consideration and the apparent 95% success rate of the Mini ARK (not to mention that even if it doesn't work for you you can still have a transplant), why is the Mini ARK not even considered or offered to most sufferers as an option of treatment?
My boyfriend is going to New York next week and has an appointment with a top specialist in KC there- he's going to bring up the Mini ARK with him too - but I'm worried the Doc might dismiss it with the same reasoning as the UK specialist did....'if it was so brilliant why doesn't everyone do it??' (Transplants aren't SO brilliant but people still do it!!) I don't mean to demean professionals... but do you think it could possibly be because they all want the business themselves? His specialist in London makes a FORTUNE from him, he goes through about 20 pairs of this contact lens and that contact lens (all of them resulting in pain and frustration and eye infections.... breaks my heart)- I'm sure you have to be pretty au fait with the Mini ARK procedure, it sounds very intricate- especially as it is completely different for each patient and I don't suppose specialists can just take a short course to learn how to do the procedure - according to himself Lombardi has been at it for 27 years!! So maybe they prevent their inquisitive patients from trying out Mini ARK so that they stay in good finance?
I wish I knew the answer - even if the answer is that there is hope but it depends on the patient! That's the same bottom line answer as you get for every treatment that I've heard of for KC anyway!!
So if anyone has had any true experience with this procedure whatsoever, PLEASE tell me about it! I've read alot by Hari Navarro, but I'd really like to hear other views too!

Thanks so much for your help - you're literally contributing towards the decision whether or not to fly to Rome!

Best-
Remy

Hi Remy, and welcome to the forum.

Well, what can I say? Mini-ARK and Prof. Lombardi are pretty much linked globally. I've not heard of anyone else performing this either in the UK or the US.

We've had several conversations on here before (do a search for mini-ARK), but have never really come to any conclusions.

I have no doubt that Prof. Lombardi does seem to get results, but equally, these results are pooh-poohed by other professionals.

However, if your boyfriend is getting through so many sets of contact lenses then he should not be paying for each of them! The NHS scheme would, I understand, provide limitless pairs within a year until they can find something that works, even covering prescription changes.

I know I've been no help, but please do let us know how your boyfriend gets on.

(Raises eyebrow...and says Hmmmmmmmm! )

Remy

I think what you have done for your boyfriend is outstanding and I commend you. I have yet to meet someone so passionate about something and drive themselves in it, so well done!

But there really is not much more to say. You have asked questions and yet answered them yourself. The knowledge you have shown is outstanding and yet again commendable.

You paraphrase

.with an experience of thousands of refractive operations since 1980, I have been able to conceive (already since 1985) of this simple operation to resolve definitively (in 95% of cases) the keratoconus problems of types I, II and some selected cases of type III. This operation has proved itself, with the outcomes achieved over 15 years, able to reduce at least by 95% the need for corneal transplantations for keratoconus in the world. "
???

And with that, it kind of sums up what you are looking to find? Surely with that kind of information its worth going straight to Prof Lombardi? I know I would have for sure.

You also say

I wish I knew the answer - even if the answer is that there is hope but it depends on the patient! That's the same bottom line answer as you get for every treatment that I've heard of for KC anyway!!

I think you have the answer! If you beleive in this, Id get on that flight and see Lombardi like now....and I mean that......each have there own experiences...but its clear you feel passionate about this treatment....so you go girl!

At the end of the day, theres very many treatment options that are available, each with there merit and each with there disadvantages. Some treatments work for some, others dont work for any. There is no single solution for KC, merely Management Techniques which we adopt.....we try one, then we try another, then we realise its accelerated to fast and the only option left is a transplant (Yikes not the "Barbaric! one! I hear you say) at which stage we realise that the one thing we didnt want, we thought against is something we now need. Try and avoid that! And it seems that with the manner in which you are approaching your "boyfriends" treatment, you may never need to put him in that position; or at least I hope so!

Id love to read about how you get on and the experience as its posts like this that allow the KC community to see exactly what other treatments and resources are out there; and for this I admire you.

To my knowledge, theres not many that Ive read on this board who have had this. The good Hari has posted a fair few extremely informative posts, and its clear that the treatment has been a life changer for him...and to hear\read that is excellent.

Glad to see that you will not take any answer and are looking at all avenues!...hopefully this will work and it can be an experience we all can learn from!

Keep us posted!

All the best!

Jay

Thank you both - I'll fill you both in with any progress news I promise- be great to help other sufferers too so I might as well!! I just e-mailed Dr Swanson in Mexico after a long Google search trying to find his website address - I read JMR's message with regards to her Intac/C3R experience (http://www.keratoconus-group.org.uk/for ... .php?t=902) and I thought I might as well find out about these routes (even though it sounds rather painful...!!)
All the best!

Remy,

None of the surgical interventions are generally not that painful, most seem to have discomfort for a couple of days, but more down to soreness of the eye lid that is pulled out the way and some light sensitivity.

C3R is probably the least intrusive or painful of the surgical techneques.

Remy,

I may not be able to write later on, but wanted to ask if your boyfriend has tried a scleral lens, it should be tried before surgery as it may be enough.

Just a few things, Mini-ark after intacs is not possible (after taking out the rings), mini-ark after a graft is possible, of course it can be tried before a PK graft, its not very good at large KC cones (nor is Intacs) Once it goes to any surgery the results can vary.

You can email this guy who recently had mini-ark, I asked if it was ok for him to be contacted by you, and he said yes.

gilbert_shelby@yahoo.com

Ah thank you so much Sajeev, I'll certainly contact that guy - I really appreciate it. Incidentally can one have Intacs implanted after a Mini ARK if need be?

I'm glad to hear that procedures aren't painful- I was just judging from one person's experiences, but she had a very severe case and maybe it was just misfortune on her part. But either way her sight was helped tremendously in the end so I'm sure any pain was worth it.

Thanks everyone!

By the way I believe he has tried scleral lenses but they were so uncomfortable for him that he couldn't wear them! He has incredibly sensitive eyes which react badly to lenses, so even if he got to a level where glasses would help him to see normally again it would be amazing.

Remy

All the best.

Andrew

Remy,

I enquired with Dr Lombardi regardnig Mini Ark post graft (my grafts are 20 years old) and after sending topography scans of my corneal surface which ahd been taken at six month intervals for 18 months it was decided that is was unsuitable for me.

Regarding eye sensitivity, I had this in 2005 where I could not wear lenses for more than an hour which is when I contacted Dr Lombardi about mini ark and the Dresden hospital that pionered C3R.

After it was decided these techniques were not suitable for me, I found with the help of my hospital that the sensitivity was due to dry eyes. We found using Systane eye drops helped, but I had to use them every couple of hours so I tried a dietry change. I removed all juice, caffeine and fizzy drinks and replaced them with straight water and now drink at least 2 litres per day. Still have the odd coffee (no more than 2 per day) and a glass wine or beer on special occasions. My diet also contains food rich in rhiboflavin. The combintaion resulted in a three month period of much improved lens wear to the point I could cut back the eye drops which I still need but only twice per day. I get a regular 12 hours plus lens wear and have done so for well over 12 months. My KC has also been stabele for 2 1/2 years now.