C3-R for KC

[gurdevb]

I just got back from a holiday in India (punjab). I was diagnosed with KC about 20 years ago and a relative over there suggested I visit the Akal Eye Hospital in Jallandar to see what could be done as the vision in my left eye is getting worse and lenses are not helping much.

After various tests and Topography, the Dr suggested C3-R treatment but I didn't go through with it due to lack of research and time. So:

1. Has anyone had this done and has it been successful for you?
2. Is this treatment proven enough yet to go through with it?
3. Adv / Diadv?

Any help/advice would be greatly appreciated.

Thanks

[ThomasH]

Hi gurdevb.

I am not sure how beneficial C3-R would be in your case. C3-R is thought to stop/slow the progression of KC by strengthening the 'links' in the cornea. It doesn't necessarily improve vision. In order to have the procedure done, your cornea needs to be a certain thickness (but there are exceptions). I would seek out a second opinion in order to assertain what your options are now. You could maybe ask about trying a different contact lens?

[electricheadx]

Hi gurdevb

I've had the C3-R treatment done on my left eye 2 months ago.
It has improved the flatness of my cornea by about 1.5D from the last scan that was done. I am wearing a Mini-Scleral lens in that eye now and my vision is really crisp now.
I still have a little haze in my vision in this eye, but they tell me this will clear up in time.
Advantages so far.
My KC has been stopped in it tracks, and has even reverted slightly in that eye
Much better fit and more comfort with my contacts

Disadvantages
I was out of work for 3-4 weeks as i really couldn't see anything out of the eye after the procedure
I couldn't drive for about the same period of time
Cost. I had to pay for the procedure out of my own pocket
It is a relatively new treatment and as such the long term affects are not known yet.

Regards
Denis.

[gurdevb]

Thanks for the info Denis, that was really useful to know.
I'm finding the vision in my left eye has gone worse and I'm wearing Rose-K lenses which are comfortable enough but not giving me the vision.

I didn't know about the 3-4 weeks out of work. If you dont mind me asking, who did you have the procedure through and how much was it? Did you only do one eye (how long ago) and do you have plans for the other?

Thanks

[MartinC]

is this c3r or cxl, ie epi on or off?

[electricheadx]

I had the procedure done almost 2 months ago to the day.
It was the CXL with the Epi off.

I'm i Ireland so i had the procedure done in a private clinic here called "The Wellington Eye Clinic"
The procedure cost me 1500 euro for the left eye.
They will do it one eye at a time as i would have almost no vision if both were done at the same time. You have a thick haze/fog obscuring your vision after the Op.
My job is highly dependant on my vision so i had no choice but to have the 3 weeks off. Others report that their vision returns faster, but this is just down to how quick each individual heals.

I will be getting my right eye donw a soon as possible(next month roughly). The surgeon wants to make sure i have good stable viaion in my left eye before doing the right.

If you do wear glasses for an hour or two a day like myself you will find that after the CXL your prescrition will change and take some time to settle down before the prescription can be altered. Another reason for the one eye at a time approach.

The vision in the left has gone from practucally nothing to 6/10
This was a lazy eye as a child so even without KC a 10 years ago with glasses it was not this good.
The vision with the Mini sclerals is much more crisp and sharp then with the Corneal RGP's

As for the lens comfort. I wear them in a cleanroom with 0% humidity. They are comfortable as long as i put some drops in every 2 hours and drink plenty of water.

Hope this helps
If you have anymore questions i would be happy to help.

[GarethB]

Hi electricheadx,

I wear Kerasoft IC soft lenses for my KC, they are a high water content silicone hydrogel and I can now work in areas of 0% humidity and don't need to use any eye drops at all. With my RGP's I was using eye drops every hour which I found very inconvenient. I get 6/ with the soft lenses which is one line better than I go with my RGP's. My lenses wer is up from 6 - 8 hours to wearing lenses comfortably all my waking hours. While at a confrence in holland I wore them 19 hours straight for three consecutive days before returning to my more normal 16 hours lens wear.

[lars]

I've also had cxl (combined with limited topo-prk). It's been two years since I had this procedure and I have only good things to say. The condition is slightly reversed and stable for this period. My BSCVA is now 80%. The only problem I have is that my eyes are now slightly dry, but my KC was quite aggressive, so this is just a minor discomfort for me.
The sooner you have cxl, the best results you can expect. There have been reported some rare side-effects, such as infection due to the removal of the epithelium, but I think that the benefits outweigh the risk of a side-effect. This is my personal view, you are the one that should decide what's best for you.

Cheers

[electricheadx]

Hi electricheadx,

I wear Kerasoft IC soft lenses for my KC, they are a high water content silicone hydrogel and I can now work in areas of 0% humidity and don't need to use any eye drops at all. With my RGP's I was using eye drops every hour which I found very inconvenient. I get 6/ with the soft lenses which is one line better than I go with my RGP's. My lenses wer is up from 6 - 8 hours to wearing lenses comfortably all my waking hours. While at a confrence in holland I wore them 19 hours straight for three consecutive days before returning to my more normal 16 hours lens wear.

Hi GarethB
How does the Oxygen permeability of the Kerasoft Lens compare to and RGP?
My Optom does fit these but was a concerned that its not quite as good.

Denis.

[GarethB]

My undestanding is that the Kerasoft IC oxygen permeability is about as comparable to RGP lenses. I am post graft and my corneas very sensative to oxygen permeability and it was something that concerned us when I first started working with the comapny that developed these lenses. When I used the Kerasoft 2 lens, the material was very different and that had a lower oxygen permeability to RGP lenses and withing an hour or so I would have oedema in my corneas due to lack of oxygen.

This is no problem with the Kerasift IC being a high water content silicone hydrogel lens which I can wear all my waking hours, infact worn them 19 hours straight on three consecutive days with no vision drop out through that time at all.

I fully understand your optoms concerns, mine at the hospital had the same and monitored me on a regualr basis while I work qwith the manufacturer during the lens development. The hospital admitted that they were wrong in my case, something I respect them for being so honest and they now fit more people with these lenses.

It is perhaps one of those things you need to try and review on a regular basis as you transition to a new lens type. As you will be aware with any lens, there are no guarentees and there are the occassional exceptions to the rule.