KC guy living in Colombia in need of advice in English!!

[daveparsonson]

Hi all,

Hoping that I can get a little advice that I can understand as I live in Colombia with less than functional Spanish and have recently been diagnosed with KC in my left eye. I am supposedly at the best clinic in Latin America so not doubting the diagnosis, however with next to no knowledge on KC, the proposed treatment is worrying me a tad.

Let me give a brief History...

1. Sister has KC and had a cornea graft about 3 years ago
2. Have been monitoring a stigmatism for a while but then moved to latin america and had not done it for about 2 years
3. Finally went to this clinic last week and was diagnosed with KC in the left and also probable glucoma (im going for further tests next week)
4. they want to try cross linking (with riboflavin??) as a treatment

The fouth point is where I would like some advice if possible as from the research I have done, it seems like this is a new and possible experimental procedure and I dont particularly feel like being a Colombian experiment if there are dangers attached.

Can anybody give me the pros and cons of this procedure, what it entails, and also if there is any problem with this and the possible glucoma which I may or may not have? I realise that I have not given much info but hopefully there is some to go on. I do have a bunch of papers in spanish which I can attempt to digest if there are some important numbers etc that u need.

thanks in advance

Dave

[Andrew MacLean]

1. Sister has KC and had a cornea graft about 3 years ago
2. Have been monitoring a stigmatism for a while but then moved to latin america and had not done it for about 2 years
3. Finally went to this clinic last week and was diagnosed with KC in the left and also probable glucoma (im going for further tests next week)
4. they want to try cross linking (with riboflavin??) as a treatment

Dave

Dave

Welcome to the forum! I am sorry that you have had such dolorous news when so far from a clinic where your native language is the same as the local language.

Your sister's experience of keratoconus may not tell you very much about the likely progression of your own condition. It is true that for most people with keratoconus, there is never any need for surgery. However, the professionals at your clinic have seen your eye through the famous 'slit lamp', and we have not. Nobody here is in a position to gainsay anything they have advised.

Crosslinking with Riboflavin has been offered as a treatment for keratoconus for some years now, in some European jurisdictions, and it is increasingly available in the NHS, firstly arriving as a private option, but now trialed in the NHS.

As far as I can make out, the treatment is designed to thicken and stiffen the saggy keratoconic cornea. I guess that you can use "Google" to check on the possible side effects and complications of this therapy.

However, there are many people in Europe and in the UK who have known great benefit from Crosslinking.

Is there any reason why they think that Crosslinking would be a good option right now?

All the best.

Andrew

[rosemary johnson]

Hallo and welcome!
It does sound as if the clinic know what they are talking about, albeit we have not, as Andrew says, seen your eye(s).
Crosslinking: there is a lot about it on these forums, with people who have had it and some who are thinking of it, and some info on the home page.
The idea is it strengthens the collagen (by making it build stronger links from stand to strand) and thus the cornea is stiffer and the KC doesn't progress any further - or at least, not so fast.
(KC comes from defective maintenance of the collagen strands, so the cornea gets thinner and weaker and floppier.)
The advantage is that -0 hopefully! - the KC doesn't get any worse, and in particuarl it stays at a stage where the vision can be readily corrected with glasses or contacts, and never gets tot he point your vision is terrible and uncorrectable and you need a transplant.
The disadvantage: no-one knows whether someone in the early stages of KC would ever have their KC advance much anyway - many people's KC stabilises itself and never gets very bad anyway.
So you might have had all the hassle, cost in some countries, time off work, pain or discomfort, an d(maybe small) ris of something going wrong, and you may not have needed it anyway - but you'd never know.
It's said to take about 6 months for the vision to stabilise again after the procedure. SOme people gt more pain than others.
Other possible disadvantage is the risks for exposure to the UV they use. They expert view seems tobe that the riboflavin adsorbs the UV so it does not get through the eye where it scould cause damage.
The procedure has been around for about 12 years in some parts of Europe. It seems to stabilise the KC for 10 years at least; whether it is stille ffective after 20, 30, 40 years, no-one yet knows. Nor if there are any long-term effects (like from the UV) that may materialise after more than 12 years.
It is possible they think that if your sister has KC and has got to the stage of needing a graft, then you have an increased risk of doing so.
I don't know about the interaction between KC and glaucoma with regards to a cross0lining procedure, nor how th crosslinking, the light and the riboflavin would react with any glaucoma medication they may want to putyou on.
Glaucoma, BTW: the IOP-Intraolcular pressure - goes up, and this elevated pressure can cause damage tothe retina. I'm not clear from your post whether they have found retina damage, or only high pressure and they want the specialist to look at your retina? I hope the latter....
If they are worried about the pressure being too high, there are various types of eye drops they can give you. I've had three types so far. Fortunately so far I haven't discovered what they do if the retina looks faulty.
I'd guess they might want to get the pressure under control before trying a crosslinking procedure - not least, as the crosslinking actually involves scratching the top layer of cornea so the drugs soak in better, and they wouldn't want the pressure blowing the eye up like a balloon while thus weakened!
SOme pepole do just tolerate higher eye pressures than others. Also, it can be hard to get a good pressure reading on an eye with KC because it is soft and squashy anyway!
I hope thi sis coherent and useful. Best of luck with dealing witht he clinics - gotta say, I take my hat of to you, coping with this in Spanish. It's hard enough in ENglish.
Rosemary

[Gabriela Neal Gonzalez]

HI Dave, I had Collagen Cross Linking done last spring/summer and I think it is a worthwhile procedure, it will stabalise your KC, if not imrpove it a little (depending on the person). After I had the procedure done it was painful but with the right painkillers, anti inflammatories, and eye drops your eye should heal within the next few days, however I would advise you do your worst eye first (if both eyes are affected) followed by your better eye. Also you should try and leave your lens out for at least 6 weeks after the procedure to allow your eye to properly recover. If you have any questions I will be happy to try and answer them, I hope this has helped.
Gabriela.

[Mellibella1]

Hello. I realize that you posted quite a lot of years ago, but we will be in Bogota and Bucaramanga in a couple of weeks and were considering seeking KC treatment while there for my son. He is having collagen cross linking done in one eye only at this time due to the cost. We are considering having the second eye done in Colombia while we care there. Will you please give us some information about the clinic you went to, if you indeed had the cross linking done, how it all turned out for you, and the cost? Thank you for any info and advice you can share!
Melissa