UK Keratoconus Self-Help and Support Association

Hi,
My name is Mohammad Kamran and I am 34 years old. I am new to this forum. Approximately three years ago I was referred to the hospital after being told at an eye test that there was a possibility of having keratoconus in my right eye.

This was confirmed by the hospital who advised that the condition had progressed significantly. After over two years of trying different contacts the hospital could not find a contact lens to fit my eye due to the shape of the cornea.

The condition also affects my left eye but is at the very early stages. I am told that due to my age, the condition should have now stabilised and should not get any worse.

I have now been told that the hospital have exhausted all other options and I now need to decide either to have a graft or to leave things as they are.

On the advice of the consultant I have been on the waiting list for about six months (there is a one year waiting list for a graft) and I am still undecided as to whether I should proceed with the graft. Although I have good support from my wife and family I do not feel as though I can always speak to them about my options as they would probably not appreciate the implications of living with this condition and also the implications and risks associated with having a graft.

I can honestly say I have changed my decision in my head on numerous occasions and depending on who I speak to and what I find on the internet can lead to me changing my mind again.

I therefore feel that in order to help make a decision It would be prudent to speak with people who have gone through and are going through a similar experience to mine.

I work as a solicitor and work on a pc for most of the day. I am worried whether having the graft will affect my job in any way. My biggest worry is losing the sight in my eye completely following the graft even though my vision is very limited due to substantial scarring.

I have also heard that some individuals question whether the pain they experienced following their graft was worth going through given the level of improvement in their vision. I appreciate that every case is different but would really like to hear from individuals who have gone through the same process as me and who would not mind sharing their experiences post operation both good and bad.

I hope this will contribute towards me making a decision as to whether I proceed with having the graft.

Finally I would like to apologise for writing a short essay. I hope some of you made it to the end. Lol.

Look forward to hearing from you guys.

Hi Mohammad and welcome!
I guess the first thing I'd want to check is whether you really have exhausted all lens options, including scleral lenses, which aren't available in all hospital contact lens depts, but which can often be fitted when the shape of the cornea can't be fitted with any other lens.
But if you have tried all lens types, then as someone who has had grafts in both eyes, I can say that they gave me my life back when my vision in both eyes was very poor and I was struggling to keep working. As I'm sure you've been told, it's by no means an instant transformation - getting good vision back in the operated eye can take anything from a few months to over a year, and most people will still need some correction either with contact lenses or glasses after a graft. From what you say, it sounds like your better eye is doing all the work at the moment anyway, so even though the recovery period to good vision can be long, you shouldn't be any worse off than you are now during that time because your 'good' eye will continue to work for you. And while most people experience some discomfort in the operated eye for a few weeks after the op, pain after a graft isn't common.
You're not alone in finding the decision to go for a graft a hard one and I hope some of the other people here will tell you about their experiences. There's also various information we can send you, including our information booklet about KC and a DVD of our last conference which included talks about all the current contact lens options and something about corneal grafts. If you e-mail your postal address to anne@keratoconus-group.org.uk I'll send these to you.
You've come to the right place to find people who do understand what living with KC can be like, so do ask as many questions as you like!
All the best whatever you decide.
Anne

Hi. I'm afraid I can't help with any questions relating to grafts... but I find it interesting you've been told about contacts and grafts, but haven't mentioned CXL (cross-linking) has this been talked about to you or are you unaware of the procedure? Not that it would probably help your bad eye, but it might be able to help your good eye if it does start to progress.

Hi,
I was in a very similar situation to you a couple of years ago. I had KC in both eyes, but only very minor in one eye so that vision is fine without glasses or contacts. In the other eye however it was bad to the point that I couldn't really see anything. With my good eye closed I'd just see vague blobs of light. Not too much of an issue as my brain just shut off the signal from that eye but it would become noticeable when I got tired, and it would often cause problems when driving, particularly at night to the point that I kept my bad eye closed most of the time when driving (not ideal). I was also very sensitive to bright lights.
I went down the contact lens route, and corneal lenses were not suitable as the kept falling out, so I ended up with a scleral lens (worth looking into if you haven't already tried it). In my case, whilst the scleral lens fitted fine, the improvement in vision was minimal - I went from not being able to see anything of use to being able to recognise people but that was the extent of the improvenment, and it continued to deteriorate to the point that there didn't seem much point in continuing with the lens as my other eye was (and still is) pretty good - the consultant said it's one of the most asymetric cases he's seen.
It was suggested that I go on the list for a graft, and for me it was an easy decision - the vision I had in that eye was next to useless, and my job as a design engineer requires the use of a computer all day, with increasing levels of 3D visualisation, which with one eye is pretty tricky to say the least!
So I went ahead with the surgery just over 2 years ago. I would describe the pain more as severe discomfort in my case. Like you had a huge amount of grit in your eye but this only lasted for a few weeks at most. Vision wise the improvement is vast, but unaided the vision in my bad eye is still pretty poor (Think just make out the top letter on an eye chart, and even that's a struggle). The main difference came very recently when I was fitted with a contact lens. Again, the corneal lenses didn't work, but when I tried my old scleral lens it was quite incredible, and has transformed the way I see things. Everything is pin sharp, looking at my phone looks incredible with letters looking sharp and bold (where I didn't think there was any issue before), TV look sincredible and at work I can see everything on the screen pin sharp where before I was struggling without realising I was. I also saw my first 3D film a few days ago which having never been able to see 3D before was quite remarkable. This is all in the last week or two since I've been wearing my lens.
In short, I would say I have absolutely no regrets, and despite it taking nearly three years from going in the list to where I am now I would say it was definitely worthwhile. The few weeks of discomfort and many trips to the hospital seem like very minor inconveniences compared to the huge difference it has already made and I'm really glad I went ahead with it.
Apologies for the very long post, but in short I guess I'm saying go for it, and good luck!

Hi
Thank you for taking the time to read and respond to my post.I did not mention before but I also suffer from hay fever and this would cause me to rub my eyes a lot which in turn probably contributed to the thinning of the cornea.
With respect to the contact lens options I was told that due to the KC in my right eye having progressed significantly they could not find a range of lens which would sit on the cornea as it was too steep. The hospital contacted the manufacturer of the lens to make a more tailored lens for my eye but I found that this kept slipping and falling out.
The hospital also then tried the scleral lens which again could not fit due to the steepness of the cornea. Finally they tried the piggybacking (2 lens in the same eye) which again did not work.
This process lasted over two years and the hospital were great in trying to avoid surgery and trying to find a solution with contacts. Finally I was told that they had exhausted all avenues with respect to contacts and I needed to make a decision as to whether to have a graft.
I was told that CXL was not an option in my right eye as the condition had progressed too much. With respect to my left eye this has been monitored over three years and there has not been much progression of the KC in that eye. At my last appointment (beginning of May) I was told that they would not monitor my left eye anymore as they were satisfied that given my age this would not now get any worse. Should the left eye have worsened then CXL would have been considered.
Lastly turning to the post by Chuck I can honestly say that your post struck a cord as for the last three years I have been explaining my condition to family members, friends and colleagues and I have always felt that they seem confused. I have always found it difficult to explain the deterioration in the vision of the right eye. The best way I can describe it has been to say that it is like looking through an obscured glass (the type which you find in bathroom windows). I have substantial scarring and therefore the blurring is also substantial in that eye (the prescription in my right eye had they managed to fit a contact lens would have been -35). I have felt silly at times in using this analogy to try and explain the vision I have.
However reading your post has described exactly my situation and I cannot believe there are individuals out there who have had very similar experiences to mine. I was also told by my consultant that my case was rare given that one eye was really bad whereas the other was not affected much by the condition.
Over the last year the condition has started affecting other aspects of my life. I play various sports and have found that judging distances has started to become difficult. I can also find that if I am trying to pour water into a glass that I can sometimes miss the glass completely.
Although I know that there is no vision in my right eye I think the biggest worry for me would be to lose my eye completely and to have total blackness in my eye.
The consultant has said that this would be extremely rare but obviously cannot make any guarantees as each case is different.
I would like to say a big thank you to you all for responding. It really does help hearing from people going through a similar condition. My only regret is not joining and posting on here earlier.

Hi again, Mohammad.
Well, it's clear your hospital has tried all options for you. So you sound in a similar position to mine when I had my first transplant - I felt at that point that I really had nothing to lose. Of course no surgery is completely risk free, but corneal grafts have been done for well over 100 years now (much longer than cataract operations!) so it's a well tried procedure and the likelihood of anything going disastrously wrong is extremely low.
I'm sure lots of us here can relate to the description you give of your sight (I've used the frosted glass analogy in the past too) and the problem of judging distances and of spilling water all over the place and not in the glass!
I don't know if you've found the leaflets you can download from our homepage www.keratoconus-group.org.uk/sitev3/publications.html about KC and work, which try to give simple explanations of KC for employers and others who have never heard of the condition.