Questions

[DC]

Hi Folks. I have a number of questions I would like to ask.

I am 29, due a consultation with my local hospital in a couple of week's time. I have been known to have had KC since I was 21.

I was offered a graft before and I have waited around and waited around because quite frankly I am scared to get it done.

However I don't want my sight to get any worse than it is now.

Can anyone give me some advice/reassurance?

[GarethB]

Welcome to the forum DC.

The graft does not take long at all, you will be in surgery for about an hour and most people go home the next day.

Your eye will be sore for a couple of days and you will have eye drops or cream to put in your eye but you will soon get used to the stitches especially if you are used to wearing contact lenses.

It can take time for any change in vision is apparent. Most surgeons now who use single stitches take them out gradually as the ey heals to help the cornea heal to the correct shape and then after 12 - 18 months the final stitches will be removed. It seem s quite common now that once the graft has stabilised to some degree that they will try and correct your vision with glasses.

Have a look at the Frequently Asked Questions section of the forum.

To be hones most people here who have had a graft have said they do not know what there was to worry about once it was done.

Hope this helps.

Regards

Gareth

[DC]

Welcome to the forum DC.

The graft does not take long at all, you will be in surgery for about an hour and most people go home the next day.

Your eye will be sore for a couple of days and you will have eye drops or cream to put in your eye but you will soon get used to the stitches especially if you are used to wearing contact lenses.

It can take time for any change in vision is apparent. Most surgeons now who use single stitches take them out gradually as the ey heals to help the cornea heal to the correct shape and then after 12 - 18 months the final stitches will be removed. It seem s quite common now that once the graft has stabilised to some degree that they will try and correct your vision with glasses.

Have a look at the Frequently Asked Questions section of the forum.

To be hones most people here who have had a graft have said they do not know what there was to worry about once it was done.

Hope this helps.

Regards

Gareth

Hi Gareth

Thanks for the welcome.

Ive been "lurking" for a few days before posting on the forum.

I wear glasses at the moment, I tried contact lenses but could not get used to them. The glasses help but not entirely.

I think my KC is reasonably light in that I can see most people/shapes/objects but cannot see the smaller detail ie road signs, bus numbers/destinations etc.

I want that type of vision back. Do you think that will ever happen and will I still require glasses/lenses even after the op? Or would that be just for a while while the eye heals?

Thanks
dc

[GarethB]

The aim of any treatment for KC is to change the cornea in such a way that vision can be corrected 'easier' with lenses or glasses. So even after a graft most patients still need glasses or contact lenses to see what we would cinsider well.

If you are on glasses, you might like to consider intacs or C3R. This is because a graft can not be reversed and is saved when all other options fail.

Intacs is sewing something in place to 'shaw up' the KC and make sight correction easier. As you can tell I know little on this which is why am going to the Birmingham local group meeting to learn more as the guest speaker will be giving a presentation on the role of intacs in the management of KC.

C3R in volves removing the very top surface of the cornea and adding Rhiboflavin drops and a co-enzyme which is activated by UV light. This stimulates the production of collogen crosslinking which has failed in our cornea and so far on the cases tried has stabilised or regressed the condition. The jury is still out on the long term benefits. As far as I am aware a few places do this privatly but not yet on the NHS. All the studies I have read have been very careful on the type of patient they have treated so the jury is out as to is it suitable for all mild cases of KC. It has not really been tried on advanced cases but such terms are relative, what is mild to one is severe to another.

A graft can take 18 months or more before the full benefits are found and as I said most people still need sight correction eaither with glasses or lenses. I got luck, a few years post graft I had good vision without glasses for about 5 years then progressed to glasses and now 20 years on I am back to lenses.

Glad I had the graft because despite being back on lenses I still get perfect vision.

Hope this puts things in a bit more perseptive from my point of view.

Regards

Gareth

[Alison Fisher]

Hi DC

Both my eyes are grafted and I wear glasses. I am extremely happy with the results but am also very aware that my vision is quite different from that of someone who has never had any eye problems. It's a kind of the best I can hope for in a bad situation kind of thing.

With my grafts being done some time ago I'm right out of the loop with current contact lenses and just when grafts are offered. For me they weren't offered until my eyes could no longer be fitted and I couldn't see the eye chart. I felt I had nothing to lose and everything to gain. As a purely personal observation it seems odd to me to go, in one step, from managing with glasses to a graft - but like I said I am out of the loop with so many things and am certainly no doctor.

If you do decide to go for a graft don't forget that no matter how much research you do, or questions you ask, no one knows for sure what the outcome will be until it's done.

[samba_elite]

i'm in your position mate and for me the worry isn't so much the physical aspects of the graft process so much as the recovery time,i share my living time between 2 countries,approx 7 months at a time i'm in Greece and the remainder of the year i'm here in the UK,financially i can't stop switching homes like this but have been told i will need to be in this country the whole 12-18 months with no more than a few days away at a time,i find this hard to work around to say the least as i have serious commitments in both places,especially Greece,but i'm a UK citizen so need to have all treatment here.

Work that one out then peeps!

[Andrew MacLean]

DC

Welcome to the forum

I waited several decades before my first graft. I reckoned that as long as I could see well enough with contact lenses, there was no need to let anyone get about my eye with anything sharp.

In retrospect I think I waited a little too long. I had made up my mind that I would have no surgery until I was blind. That may have meant that I'd have made it through my whole life without ever having surgery, but when I was just 53 I became lens intollerant and therefore legally blind in both eyes.

My first graft in December of 2003 was PK. It took a while for my sight to come back, but when it did I was able to drive again.

My second graft was done in October this year. It was a DLK (DALK, sometines called Lamellar Keratoplasty). I can already read with that eye without the aid of glasses.

The important thing in all this is for the 'patient' to take control. Ask questions until you are satisfied with the answers.

All the best.

Andrew

[Anne B]

Andrew, Its good to hear your second graft is doing so well.
You must be very pleased.
It would be good to hear more about your recovery.

Anne

[James Colclough]

I think it is a matter of personal choice.

I am 42 was offered a graft earlier in the year, but as I was told my vision would not improve with the graft, I have decided to explore all other contact lens options.

Personally, I see the graft as the last resort, as there is no turning back.

With the lenses, i take the discomfort as the trade off. Although I do now have litttle to no disomfort as I piggy back.

I forever live in hope that when or if I HAVE TO HAVE A GRAFT laser technology will have improved.


Best of luck on what is a tough personal choice.

[james mckinlay]

hi there i had 2 grafts and i would reccomend them to anyone that gets offered them they make such a huige change to your vision when they settle down.

in my case it took 2 years after the graft to see the full benefits of it but it was worth it in the end.

even if you need to wear spectacles or contacts its still worth it in the long run.

keep us posted

all the best james