additional background and whining

Well today my eyes are so sore I am keen to try anything that might help. It's my "good" eye that is worst, it seems odd that operating on the other eye may help it. Even if it doesn't I guess fixing some of the problems has to help!

When I saw the Dr both times after testing my eyes he was emphatic that I would get the vision I had with contacts after the surgery with glasses. The first time I had muscus between the contacts and I was seeing 6/9, the second time I was seeing 9/9 and he commented on how good the contacts were correcting my vision. That with glasses would be pretty cool!

Deciding to get a partial-thickness-cornea-transplant (DALK)

Deciding to get a Deciding to get a partial-thickness-cornea-transplant , or in less comprehensible terms a deep anterior lamellar keratoplasty (DALK) was a difficult decision for me, and it was sometimes tricky to get reliable info and to understand what I was getting myself into. Having made the decision I thought I may as well blog the process so that any other super geeks like me out there googling about it could read my statistically insignificant experience and hear the things I considered coming to this decision.


My background: I have had keratoconus for over 10 years now, and have worn hard (gas perm) contacts for over 10 years in one eye. The eye seems to have developed an intolerance to the contact. I am legally blind in that eye without it.


With it I get inflammation and ridiculous sensitivity to light (specially in the morning), and wind, dust in the air etc. It makes being outside on a nice sunny day miserable. For the past couple of years I have worn a piggyback configuration of lenses (the gas perm lens on top of a soft lens). This has made wearing the lens MUCH more comfortable, however my eyes now produce large quantities of mucus which gets between the two lenses meaning that I have to take the gas perm off on average several times a day.


In addition the eye in which I have very little keratoconus gets sore - I believe because of the mucus and dryness as nothing much can be found wrong with this eye it seems likely that a lot of this mucus etc in this eye is due to the problems that my other eye has. Sometimes I notice a slight change in vision and this makes me a little concerned that the treatment this eye is getting could have long term ramifications. - The "good" eye already has a slightly weakened and damaged cornea.


My options:

a) Get a traditional cornea graft. The cons with this is that they are not expected to last forever. Getting accurate stats on how long they do last is beyond me, specially as rejection can sometimes mean only that medication was needed to prevent this rather then that the graft was actually rejected to the point of needing replacement. I think there is a fair variety in graft survival between individuals, sometimes it works very well. Indeed the oldest living human organ may be a cornea ( 123 year old cornea ) I like to be rather exageratedly careful about my vision. The process can be repeated but each time their have a decreased life expectancy and some people have effectively become blind from this. It is rarely done more then 3 times. This option then is particularly unattractive to me as I have a very small chance that my "good" eye could develop serious issues at some stage.


b) Stop wearing the contacts and get used to life with one eye. They say that after a few months the brain somehow finds other cues to judge distance etc. I could (after 3 months in Australia) still drive a car lead a pretty normal life - though it would have to have some impact - specially on playing sports. Supposing something did go wrong with my good eye in many years from now, at that point I could have the cornea graft, which by then may well be expected to last me the rest of my life. So I would always have one working eye, and I avoid disabilitating blindness. There is a very small chance that the keratoconus in my "good" eye could get worse later. A very small chance.


c) I get this new funky partial-thickness-cornea-transplant which should fix my eye without any risk of long term failure. This sounds very good, however there is some risk that there will be a mistake when making the very precise measurements needed for this procedure, which would result in the traditional full-thickness graft being necessary. How risky is this? Well I suspect it depends on your individual surgeons skill and his exact method of performing the procedure.


Dr Andrew Maloof came highly recommended to me, so I went along to him to find out the risks. Dr Maloof told me:

10%;

That he has done approx 800 operations over 8 yrs with no problems;

On a later phone call that he had done hundreds of operations with only 1 operation having to be a full thickness graft and that now he had methods to stop this ever happening again;

I was told about the risks of driving a car everyday as if the level of risk was on a par, though this wasn't explcitly stated;

I was sent papers from his office estimating the risk was 10%-15% (too high as far as I was concerned)


I was rather disturbed by the range from 15% to 0% given as the risk of the operation but after being assured that he was a good doctor, the first to do the operation in Sydney and the Dr in Sydney who had performed it the most times I felt a little better. Iwas also encouraged when a random family acquaintance who worked with Dr Maloof on other operations also told me that he tended to exaggerate the risks for legal reasons.


So -ta dah - after careful thought I have decided not to risk driving. Then I decided I could live with that much risk and so I may as well to get the partial-thickness cornea transplant. It's due in a few days and I'm planning on bloggin my experiences for the general enlightenment of the world :) I may even be able to give a typical account of the length and pain of the recovery process.