UK Keratoconus Self-Help and Support Association

One of the five percent.

Hi I am 45-year-old male and was diagnosed with Keratoconus at the age of 12. I had asthma and all ways used to rub my eyes, as they were always itchy. I wore contact lenses for a while but they always irritated my eyes constantly. My vision really started to deteriorate at the age of 20 in 1982 when everything I looked at had many edges and bright object were hard to look at as its shape was refracted. My left eye was the worst but my right eye was only marginally better. I also became night blind straight away. I couldn’t drive my car anymore and even found it difficult to drink alcohol, as it seemed to make my vision worse so I lost a lot of my social friends. I was sent to Sydney Eye Hospital at Woolloomooloo and was told that with a cornea transplant there was a 95% chance of restoring my vision. I had lost my job by this stage as an apprentice machinist cause I couldn’t see what the hell I was doing. In 1983 I went in for surgery and was excited, as I would get my life back. I was operated on by a Proffesor and after the surgery they had to give me a needle so that I wouldn’t throw up. I was in hospital for 10 days and the stitches in my left eye nearly killed me, they felt like little knives. Once I got home I couldn’t do much and went thru the process of the many eye drops. On many outpatient visits they told me that my vision would get better but it never did. Eventually it was determined that I had Keratoconus in my new graft and I had another surgery to try to fix it, they ended up taking out the stiches in my eye at around the six month mark. My left eye was a mess, when I looked at a light the refraction filled my whole field of vision; I virtually walked around with my left eye closed. They took a lot of photos of my left eye on big machines so I think it must have been different. I had been unemployed for 12 months by this stage. In early 1984 they decided to do a second graft on my left eye to replace the first one again performed by a Proffesor and another 10 day stint in hospital. This operation left my eye feeling like an over used basketball, it was so weak and was in so much pain again I went thru the rounds of eye drops and out patient visits for another 6 months. Again it was found that my stitches were breaking and the edges of my graft were coming apart. By mid 1984 I went in for another operation and they took out all the stitches. After 4 operations I had had enough and I wasn’t going to let them touch my eyes again. My left eye still had refraction but it wasn’t as bad as the first graft. So after the end of two years of operations and being unable to do anything at all was my vision any better in my left eye, no it wasn’t it was worse, I wished that I had not had it done at all. In 1986 I was diagnosed with major food allergies, which seems to go hand in hand with Keratoconus. I managed to get a job that year but I was never the same person that I used to be. Keratoconus is different to other eye problems cause your eyes make you see things that aren’t there because so much of the light is bouncing back the wrong way. I married in 1988 and have two children that are Keratoconus free. I managed to get a job working with computers which was about the only thing I can see when I get the screen about 10 inches from my face. Throughout the 90s I would hear of new surgeries and would go and get checked out by eye surgeons but they always said that they couldn’t help me. In 2006 after 20 years of blundering thru life my left eye swelled up to the size of a golf ball and my vision went milky, I freaked out and went to the local ophthalmologist and he said my graft had become infected and that I had to take a course of steroids. My left eye eventually went down again but now the vision was much worse. Every morning I would wake up with mucus in both my eyes, which had never happened before which still continues to this day. I went back to the ophthalmologist and he was excited that my graft was still attached really well but was not concerned that the vision thru it was virtually gone. Shortly after this I started having trouble seeing my computer screen even though my nose was virtually touching the screen. I went to get some new glasses and the local ophthalmologist said that my eyes are at that age where you lose your close sightedness like your parents did when they started wearing bi-focals and couldn’t read the newspaper unless it was held three feet in front of them. So the only little bit of vision I had up close is now gone and had to get new glasses to suit. Late in 2007 I went outside after being on the computer and I had a pain in my right eye it was like a knife going straight thru my right eye. Oh no I thought, its not supposed to get worse after your over 40 but sure enough my right eye had had enough, it packed it in. I went to my local ophthalmologist again and he checked it out, he said my eye looked good but couldn’t understand how the keratoconus had deteriorated so quickly in 12 months. I could see by the confused look and the shaking of his head to himself that it was a significant change. So now my good eye is gone and both my eyes are sore all the time and I wake up some mornings and my vision has changed shaped and the refraction has widened. I can’t surf anymore, which was my only stress relief. I am blaming all my mistakes at work on everything other than my eyes. Even tho I try to go outside I always find my self in a dark room. My eyes are a refracted kaleidoscope nightmare.

I didn’t write this to scare or depress people but to point out that a cornea graft isn’t all that it’s made out to be. I am one of the 5% it didnt work on.

Blissbomb

I don't know what the legal environment is like in your jurisdiction, but in the UK, my employer along with the government provided me with specially adapted computer equipment that I could use without sight. I still often operate my computer with the screen turned 'off'.

Even if these facilities are not available in your jurisdiction, there is help out there.

Thank you for giving us such an insight into your circumstances.

Every good wish

Andrew

Oh, Blissbomb! SO sorry to hear about your horrendous saga.
I do hope you find some way forward through all this.
Lots of best wishes,
Rosemary

I know that Dr. Swanson in Mexico deals with many patients who have developed KC in their transplants, this seems to be a growing problem.

Your story is the exact reason why I refused a transplant and went the experimental route. Man, this just burns me up! I think it is an important story to get out there, as well. Too many doctors who are not very experienced in KC think a cornea transplant is a no-brainer.

You see, every time I asked what happened to the other 5% (and I'm told that 5% is for ALL cornea transplants, not KC transplants), I never got a straight answer -- that is, until I asked Swanson. I believe the figure he quoted me was that his experience had been that 30% of all KC patients have a rejection, some other significant problem or develop KC in the graft within 5 five years. He told me that PMD was even worse and that my eye would reject within two years or I would be on oral steroids the rest of my life. He said he would be willing to bet on it, and when it did, since I couldn't have another transplant, I was going to lose my eye. And the other eye was headed the same direction. No thanks.

This is one of my issues about KC in the US. . . how are patients supposed to make an informed decision without accurate statistics? Not ONCE was I told what happens when a transplant goes bad, and I still can't get the stats on it. You know, I'd like to weigh all the options and the risks before I'm faced with making a decision, and yet this information seems to be something akin to the recipe for the secret sauce. I was threatened to be thrown off one discussion forum for asking what the rejection rate was for KC and PMD, because it was an "overly pessimistic view of the disease process."

In the US, it's so regulated that they cannot tell you about alternative treatments, so when I needed surgery, all they had was a penetrating transplant, and even the LaMellar was considered "experimental." Everyone just sort of shook their head and went, "tsk, tsk." You know, had I really understood the odds, I would have been seeking something else much earlier.

So if I was diagnosed with KC today, I'd schedule Intacs surgery immediately. I wouldn't wait. If that didn't work, I'd go with C3R. And if that didn't work, I'd be hunting down whomever was doing the most cutting edge work with stem cell regeneration.

I will NEVER have a transplant.

Rant over. Sorry to hear your story, but perhaps you will spare many other people the pain and anguish you've endured by sharing it with others. Any hope of getting your sight restored with an artificial cornea?

Blissbomb - I'm really sorry to hear of your sad experience. And I do hope that the right eye, having started down the KC route so late, won't progress too much. Have you tried contacting the Australian KC Association? They might be able to suggest more options for you. I know that, for example, Australia was doing trials of collagen crosslinking before the UK, so there's a lot going on now in Australia in keratoconus.

JmrMail - I don't know what the figures are in the States re grafts, but I do know that they do seem to be done more frequently and at an earlier stage than here in the UK where a graft is seen as a last resort (probably to do with the US health insurance system which seems much happier to pay for surgery than to pay for complex KC lenses).
The UK figures quoted at our 2005 conference were that 20% of penetrating grafts are likely to have a rejection episode, but 95% of these are successfully reversed with steroid drops. Lamellar (partial thickness grafts) are now much more commonly done here although some people may still need a penetrating graft if the cornea is too thin or has had a hydrops. And of course, for those whose KC isn't too advanced, the option of Intacs may be the right solution for some and crosslinking will hopefully reduce the need for any sort of transplant in the future. With so much research into KC going on, the picture does look a lot brighter for people diagnosed with KC now.
Anne

I need to clarify that. . . I believe Swanson was quoting US statistics on transplant failure, not worldwide.

The US health care system is a dismal failure, in my humble opinion. My insurance company actually fought with me about getting a Lamellar and would only pay for a full transplant. They refuse to pay for any vision care for me.

Sadly, many Americans make their health care decisions based on what their insurance will pay. I look at insurance as "catastrophic coverage" and plan on paying everything out of pocket. Last year, my medical and dental bills, prescriptions and insurance for my child and myself was almost 25% of my take home pay.

It wouldn't be so awful if the care was superior, but most US docs (outside of the KC people I've met) seem rushed, stressed, annoyed about questions, and woefully ill-informed.

At this point, I'm placing my hopes on Europe or Japan to develop stem cell regeneration. I hope that there will be an answer for Blissbomb in the very near future. I doubt that answer will be coming from the States.

thanks for the replies, I truly didnt want to bum people out, but as JRmail said no one told me anything about the downside of cornea grafts and the downside is a huge and taxing assault mentally and physically. To anna I have alwasy had Keratoconus in both eyes but my left was always worse and the one I had many operations on.

Before I had my first graft, they explained in some detail and on different occasions what were the potential drawbacks; including the possible loss of my eye, the possible development of cataracts (which did happen), the possible emotional and mental strain etc..

I had thought that "informed consent" made necessary this sort of disclosure.

Andrew

Dear Blissbomb and JMRmail,
Sorry about your terrible experience and thank you for sharing it. In SA, the potential negatives were well explained to me by 3 different opthamologists and a KC lens fitter and the posts on sites like these also showed me the down sides. and I am glad I knew these things before making my decision... BUT my PK has been very successful and I don't regret it for a moment. Statistics should be more accessible but for me the numbers are not so important- I felt I had no choice if I wanted to continue to work and live my life, and I felt it neccessary to take the chance.

I should say that both my PK and DALK have worked out very well, so that I also have no regrets about either operation.

Andrew