UK Keratoconus Self-Help and Support Association

Hi this is my first post so take it easy on me.

Brief History is i was diagnosed with Kerataconus two years ago i have since had two intac operations, as i could not get on with contact lenses which made my eyes real sore. First occasion of intac surgery unfortunately i had an infection in my eye and had to have the intac remove as it had eroded through. I then waited 6 months for my cornea to heel and then had thr surgery again as the first operation showed significant signs of improvement in vision. The second operation went well and my vision was almost perfect within 3- 4 days however on the 5th day i started having pain again and after a visit to the hospital was informed that the intac had again eroded through my cornea. How gutted was i, my specialist couldnt believe the vast improvement so quickly as i could read almost all of the eye chart but he also couldnt belive how quick it had eroded through despite the fact it was implanted as deep as possible in the corena.

I am now going back to St Thomas hospital on the 18th of August to see about C3R cross linking. My specialist Dr O'Brart (who i must say is a smashing guy and leading specialist, who has called me at 10.30 at night before to check my eye was okay, and who i have manged to speak to on weekends when he is at home when i have concerns, and i highly recommend). As C3r will only stabalise my eye in its current condition which isnt great he is hoping that if it stabalises the cornea sufficiently, we may be able to insert the intac after cross linking as the intacs obviously do work in my eye, it is just a case of my corena being to unstable to stop the intac eroding through.

My surgeon has informed me he has never done it this way round before doing the C3R first and then fitting an intac afterwards,(£1000 per eye by the way for any of you who want to know the cost). I wondered if anyone else had heard of this procedure being done this way before and if so how it turned out or if i am going to be the first. Whilst i appreciate this may be unusual i am happy to try it as i do not fancy having a cornea transplant which i understand to have long recovery times and also not always succesful, plus i do have a lot of faith in Dr O'Brart.

Any advice or any knowledge of intac insertion after C3R woudl be mcuh appreciated. I apologise if this is in the wrong place and feel free to move it wherever appropriate hope to hear from any of you soon.

Grant

Welcome to the forum!

I am sorry you had so much trouble with INTACS.

CXL (C3R) looks like a good option for those who are suitable for it. It is often offered with INTACS, but CXL is still very new in the UK, so experience here is inevitably limited.

You are right to keep Cornea Transplant for a last resort.

All the best

Andrew

The specialist here in the US tells me he prefers to do Intacs first and the seal it with C3R....a Dr. Boxer Wachler.

Good luck

Hi there!

Yes, the preferred method is to do the intacs first. The logic behind this is that you straighten the cornea up first and then lock it in with CXL.

However.....

You have had trouble twice now with the intacs and I can totally see where your surgeon is coming from to do it the other way round. What he is hoping for is to strengthen the cornea enough so that the intacs actually work. You have nothing to lose by this. CXL will give strength to your cornea... hopefully then, the intacs will stay put!

Sallys says that Boxer Wachler says the other way around, which may worry you?. Let me put that into perspective. Generally, the logical way to do CXL/surgery is to do any shaping surgery first (like intacs) and then lock it into place with CXL. So yes, Boxer Wachler will surely advise this as a general procedure - as would any other corneal surgeon. But he perhaps would not if he was faced with the same problems of the intacs popping out.

In your particular case, your surgeon is thinking hard and coming up with a treatment plan that is influenced by your individual and unique requirements. It may not yet be a "mainstream" treatment - so you may not find people who have had exactly the same procedure. Your eyes are completely individual to YOU.

Your surgeon sounds like he is a really caring and dedicated guy who is willing to try something different to get you seeing again. He could easily just say, "I tried what is indicated, it doesn't work, so that's it!" If everyone did that, we would never ever get medical advances.

As another reality check; Boxer Wachler is actually one of only two surgeons in the US who is currently doing CXL at all (apart from FDA trials). The US is waiting on FDA approval for it to become mainstream. Europe is way ahead of the US in this respect. I just mention that because we tend to think in the UK that we are behind the US in everything - but in respect to CXL, the US are way behind us - and we are behind many European countries.

So my advice is trust the surgeon you have, as he alone knows what your eyes are like. We here can only surmise and offer advice based on general principles.

Keep us informed as to how it goes!

Lynn

Hi Grant,

This too is my first post on the forum. I too am considerin INTACS, especially after my eye yesterday where I was told that my right eye has gotten a lot worse. I read with great interest your posting and I am very sorry to hear what you have been through, but it is very encourgin to hear how your sight improved in such a short time. Please contact me to let me know how you are getting on, my email address is ian@igbtech.co.uk.

From my reading on the internet I always thought that the crosslinking would be done prior to INTACS to strenghen up the corneas, but I could be wrong.

Regards
Ian.

Ian

Just wanted to welcome you to the forum.

All the best

Andrew

Hi Ian

Thanks for the message, i would definatley give the intac procedure a try, after my first operation it took approximately 3 -4 weeks before i started to see an improvement but unfortunately i got an infection in my eye, and the intac eroded through the cornea and had to be removed. The second operation my eye sight was almost perfect within three - 4 days but it also eroded through again a lot quicker than before. What i would say is that if you do have intacs dont be scared to go back to your consultant with any worries or if you have any discomfort, i think the mistake i made was thinking my eye was sore as it was part of the healing process where in fact it was the corner of the intac eroding through. I think i was unfortunate as i was only one of three people who have had to have their intac removed (by my consultant Dr O'Brart) and am in a very small minority who has had to have it removed twice. (my friends always tell me im special)

You are correct in saying cross linking is normally done first before inserting the intacs, but when i first started having treatment cross linking was a very new treatmnet and was not offered to me at the time. The idea of having the cross linking now is to halt the progression of KC so my eye doesnt get any worse. Then we will give it 6 months to see how the eye has settled down then may look at having intacs fitted again as the cornea should be that much thicker and stronger a the intac shoudl not erode through. Or hopefully the cross linking may, as it can do in some cases improve my vision. This is perhaps a backwards way of doing it but my consultant is prepared to try it this was round as the only other alternative is a transplant, so im happy for him to try whatever he feels best.

Im actually going in for cross linking on my eye this Friday September the 5th so will keep everyone upto date on my recovery and how it goes.

Hi Grant,

Good luck for Friday, I am off on holiday starting on the 7th September, but on my return I am going to look into both the Cross Linking and the INTACS and maybe try and start treatment this year. I live just outside London so may indeed use St Thomas hospital.

Cheers
Ian.

Ian

St Thomas Hospital eye unit is one of the 'gold standard' treatment centres. I know that Moorfields gets a lot of publicity (world's oldest eye hospital and all that) but it is good to remind ourselves sometimes that there are other distingusined hospitals in London and the rest of the UK.

All the best.

Andrew

Hi all

Its interesting actually, this question of which comes first, the intacs or CXL. At the moment, when people look to these options as almost last resorts rather than first port of call, then often corneas are too thin or weak to takes intacs and CXL is advisable to strengthen things up a bit.

However, if you take an early onset eye, the opposite way may work better. Intacs can straighten up a distorted cornea which can then be "set" by the CXL.

No doubt as these procedures become more mainstream there will be lots more variations.

Lynn