Tuesday 30 December 2008

3 weeks and 5 days after operation

I saw my optometrist today. Apparently my astigmatism is down to about 2.0 diopters, and glasses should be able to correct this to 20/20 vision "or close". This is good news especially as I am booked into see the surgeon again, and it's likely that he will have another go at adjusting the stitches to reduce the astigmatism - so I figure its very likely I will end up with 20/20 vision with glasses. Anyway something close to 20/20 vision would be pretty good too!

The main impediment for me seeing right now is the excess fluid inside the cornea, but this is decreasing and there is no doubt it will sort itself out over a few more weeks.

My eyes are still very sensitive, so much so that driving isn't really on and spending much outdoors in sunlight isn't pleasant; though for weeks I have been able to manage the 5 minute or less walk down to the local shops in the sunlight when I need to. Walking can be done while looking downwards which is much easier to do then looking level or up.

My eyes look fine, if anything the eye that wasn't operated on and which isn't getting the strong drugs is the most red!

I am hoping that I will be able to return to work next week, but we will see.

Friday 19 December 2008

2 weeks 1 day: Tightening the stiches - Part 1

Yep Dr Anthony Maloof adjusted my stitches yesterday. The stitches are made from one continuous piece of thread, and he simply hooked the thread between stitches in several places and gave it a pull. It was kinda a freaky experience, under general anesthetic it didn't really hurt, but I could see my vision distorting as he pulled the thread. I normally less sensitive eye that wasn't being operated on was involuntarily closed part of the time which made it trick to keep my eye still. I wasn't counting but I think he probably did it in around 6 different places.

He was full; of positive things to say about my eye. I am not quiet sure if this was because he was wanting to encourage me, it was just good salesmanship, or my transplant by some measure is a particularly good one. In any case there cannot be anything to bad with it.

I am glad Dr Maloof is my doctor, he obviously takes some pride in the statistics he records on his operations – not that I have ever seen these statistics. He does seem very motivated to get the best vision possible for me.

I don't think it is worth mentioning any new figures for my astigmatism. Dr Maloof thought that the measurement (3) after his adjustments was not accurate due to anesthetic gel on my eye and that anyway he said the figures would be quiet different by today. He did admit the adjustment was more art then science. I hope he is very artistic! He wants me to go back in another month for possible more adjustments. That will be 6 weeks after the operation. Initially he said that adjustments could be done up to a month after the operation, but maybe he was allowing for the need of a second round.

I am beginning to suspect that my eyelids are unusually sensitive. I do remember once months ago unintentionally I got a soft contact lens stuck to the bottom of my upper eyelid and I spent a day with a soft contact on my eye with the hard gas perm lens on top of that and then the soft lens in my eyelid. It was one of the most comfortable days I had had for some time! I am slightly curious about if it would be possible to wear a soft lens/gas perm/soft lens configuration. Luckily I expect I will never have cause to try.

Last night I was in much pain, it probably ended up as much as when I was at the worst following my operation, and I got so exasperated I tried wearing my soft lens which I resisted earlier.

It brought immediate relief from pain. I slept for 7 hours and being due for more eye drops which were not compatible with wearing the lens so I took it off. Before I attempted the I put lots of liquid lucubrating drops on my eye to make sure that the contact wasn't stuck to my eye – this does happen a little when the ocnact is worn longer and if the eye is dry or there is mucus around it - then I very carefully puled the contact off from well outside (below) the stitches. It came of first time very easily without me feeling anything. It felt like it caused less of a rub against my eye less then blinking does which I was glad of as taking the lens off seemed like it could be the worst part of wearing the lens.

My eye/eye lid immediately started to hurt a bit more, specially when I blinked but it was much reduced to before I put the contact on. I had the eye drops and then slept for another 8.5 hours. My eye was still not very sore and I got up had some breakfast and a shower figured I should try to stay awake if I was ever going to have any control of my sleeping patterns and then went to sleep for another hour. My eye is still so sensitive that despite typing this with a back font on a dark grey background I have had to have a few breaks – a good chance to have a quick nap - but the pain now is very very reduced.

I don't really know what the deal is with my sleeping, but I prefer to be getting lots then way to little as in the days after the original operations. I wonder if the excessive sleeping it isn't related to the pain I was in. I think pain can do other things, like increase resting hard rate (and probably blood pressure) also last time I got a bit shaky I wonder if the body puts extra chemicals in the blood or something. Anyway it will all be worth it if I end up with 20/20 vision or something close. Dr Maloof said yesterday that he was aiming for me (with glasses) to get 20/20 vision and didn't see why I shouldn't!

(Eye looking red again)

Wednesday 17 December 2008

2 weeks after operation (DALK or partial cornea transplant).

I went and saw my optometrist today. Vision from the eye is 6/21. That sounds bad but its a big improvement from the zero (actually it had a negative affect on my total vision) previous to the operation. Both my eyes can focus on the same thing nowadays which already gives me some depth perception.

Why he gave me a measurement out of 21 I do not know. Measurements are usually out of 20 or 9, and as I think 20 implies feet and 9 meters its practically the same. Not that the test they actually do could possibly be more then half that distance even with the mirror they usually use, but I guess it lets different practices share a standard measure. Maybe 21 feet is close enough to 9 meters which is the measure that Anthony has been using. (No I still haven't got my honorary doctorship. In fact I am not sure they have even got around to inventing the word doctorship.)

My vision hasn't been improving as fast the last couple of days. I am told however that as well as the cornea healing, their is extra liquid in the cornea which has to clear before my vision finishes to improve. My theory is that this fluid is now the main limit on my sight improving, and it's this that is improving more slowly, resulting in a slower correction in my sight.

I also have astigmatism. .50 horizontal and 3.73 vertical. (Ok I may have the vertical and horizontal the wrong way around in my memory.) Tomorrow I am going to see a eye doctor who hop fully can reduce the astigmatism by tightening and loosing some of the stitches in my eye. What fun! No doubt this will undo a small amount of healing.

At the moment I still don't have any better idea of what my final vision will be then I did the day after the operation. The doctors and optometrists don't seem worried by what they are seeing however so I expect this means the vision will end up good!

Saturday 13 December 2008

10 days after operation

My eyes are feeling better everyday. While it is still fairly sensitive and painful some of the most annoying symptoms that have bothered me over the last year in both eyes have gone or dramatically decreased. I have stopped medication on the right eye so I am prety happy about this though to be fair it is just possible that the medication I am using on the left eye is also responsible. It does show however that the problems in my "good" eye were due to the issues in the other eye. Just to doubly confirm this to my surprise my "good" eye actually did not see so well for a few days after the operation, however its back to seeing as well as every now, though it may still be slightly more sensitive then it should be.

My vision in the eye that was operated on is improving everyday. It is now quiet definitely better than is was before the operation. (Not that this means much as the eye was legally blind before the operations). I never used to use the eye much (for obvious reasons) however if from close up (otherwise everything was just blur) I looked at a point from which straight lines radiated out in all directions, I would see strange things with it. I got this effect by looking at the centre of my bathroom drain from close up. From about 12-2 O'clock I would see in a very blurry fashion more or less what you would expect. After that however the straight lines would *look* to curve to the left. They would not appear to come from the same point. In places they would appear to crossover even - weird- in places there was not much more then a blur.

Anyway now *all* the straight lines look straight! It's still blurry but (I think) that's because I haven't grown the surface of my eye back completely yet. The blur is also pretty much evenly spread around a line. I think a horizontal line may have just very very very slightly more blur beneath it (but letters appear to have blur up and slightly to the left). Slight is the word however. I am taking this even pattern of blur as a very good sign of the sight to come. According to Stirling; this along with being able to see straight lines means that the cornea now is very close to the ideal shape and once the surface grows back everything should be sharp and clear! Not that I really know what I am talking about. My honorary Doctorship in Keratoconus has yet to arrive. I have a book here with letters on the cover that are 5cm or so in size....and I can read them very easily with the eye! Woot! (Actually here there is a faint double of the letter slightly above and a tiny bit to the left_

Of course I am used to being able to stick the contacts on and get clear vision, and I am still finding life with practical vision really only from one a bit tricky, and yes the eye is still pretty sensitive to light or well anything. But it's slowly improving everyday.

The next interesting event will be next thursday when my optometrist thinks he may be able to get a fair idea of how my vision will end up! I will of course post news here.

Below is a picture of my eye at the moment. I suspect that the redness that you can see is largely from the anesthetic needle, though possibly there was some other damage from the operation. When my eye was looking the worst I really wasn't feeling like taking photos but the most pain seemed to be in the eyelids which welled up a little. If you look really carefully (it probably helps to know what you are looking for) You can see where the new cornea starts. One of these days I might try to get a better photo of that and the stitches. I am not optimistic of getting a photo of the stitches with my current lenses without a least a macro ring however - my bro has these and I'll have a go witgh them one day probably. They are surprisingly tiny (1/10 the width of a human hair I have heard) and the black stitches don't contrast well with my browny greeny grayish coloured eyes. (Whats with that I am sure I used to have brown eyes). I have seen big photos of light blue eyes with black stitching where the sticthing was very obvious.




I just stole a picture from the web that shows stitches after a cornea transplant very clearly. I think some photographer knows something that I don't! :) I also suspect that the stitching just isn't as clear on my eye. Maybe it was done a little differently.

Wednesday 10 December 2008

Operation plus one week

I am feeling quiet a lot beter today.   My eyes are still very sensitive but the worst of the pain has gone.    Vision is still poor but I think just maybe it is a little better then it was before the operation.   Not much but it's close anyway.   This isn't saying much of course.

It's kinda exciting however to think that in only 3 weeks or so I should have useful vision from the eye!   Now if only I could fast forward time for a couple of weeks...

Sunday 7 December 2008

Prognosis continues to be good

For the first time in a few days I can look at the computer screen without it being to bright for me eyes.  I am wearing sunglasses.

I've had some fairly rough days where my eyes hurt and I couldn't sleep - a combination I highly recommend to any seeking insanity!  Eventually I worked out that it wasn't my eye hurting so much as my eye-lid.   At this point - about 7am sunday -I started to use  lots of lubricating ointment (mainly poly visc, also some lacri-lube and I rinsed the eye with refresh tears plus) which has helped with comfort considerably.  Today my Dr also has said I can reduce some eye drops that were stinging my eyes.

I don't really know what caused this pain.  Posibly scratching fro mthe stitches.  I have been finding very hard and sometimes sharp gluck - possibly dried mucus - on my eyelids.  Also the top surfaxe of the donar corneas is supposed to come off and bereplaced by a layer that my body is growing.  I guess possibly some of this layer may have come off bits that dug into my eyelid?   Probably myt best guess woudl be thatthe eyelid got scrapped during surgery, and then was further irritated by the eye drops and blinking and moving of my eye while it was shut..  It did hurt the first time I put medicine in, though it wasn't till the 2nd time and more that the pain really remained for a long time.

Anyway it isn't a very big deal.  After having my eye checked today was told that everything basically looks in good shape.   I don't think the long term prospects of me eye has been influenced at all my this little scrape on my eyelid.   A little pain never hurt anyone!

Friday 5 December 2008

Ouch ouch ouch

OK since about 6 pm yesterday my eye has really mastered the art of pain.   I thnk helped along by one of the eye drops Ihave every 4 hours stinging the eye.   Unless I find some other replacement drop however I think it's important I keep having it.  

Oh well it's probably not unreasonable that mny eye woudl be very sore after a cornea transplant...I don't thik anything isgoing  particularly wrong.  I was expecting to nweed a few weeks of work.  Yesterday I wondered if I would make a faster recovery then that but today I am doubting it.

my eye is looking more nasty but I am not going to take any more photos.  Actually my right eye is too sensitive to look at the computer screen much so I hope this doesn't have too many typos...

Thursday 4 December 2008

Removing the hospital bandage

Well I have just taken off the bandage. It was a bit of a tricky business as the eye was stuck together with um something. I had been warned against rubbing the eye and it took a while to separate the top and bottom eyelashes and the stroke the worst of the stuff off but I think I did a reasonable job and most important didn't hurt the eye with my antics.

I cannot see anything but blur with the eye, I had hopped I might do a little better but I don't think this really has any indication of how my sight will end up. It hurts bit more now that the bandage is off because there is nothing to stop me blinking which of course rubs the cornea. It's not too bad however. I'm not
sure that a bit of blinking doesn't help to clear debris from the eye and perhaps some other useful stuff so I
am going to leave it now for a bit. I have no instructions aboiut re-bandaging the eye but I may for a while latter. I know when similar
operations are performed it can be
common to wear a shield to bed to protect the eye from harm while sleeping. I haven't got one of them but do have a fairly strong eye patch that I may wear to bed or around just because I am overly cautious. Then again for the same reason and because I have not discussed it with my Dr I may not.

The eye is shut now, the glare from the comuter screen is too much for it. In the mirror I could see a circle of dints around my pupil which pressumably is the line of stiches. They took less cornea then I thought they might have. You will not be able to see this from the photos I took which don't show much of the eye itself really. I may have done better if I had taken photos with a flash, but I am not going to do that for a few days at the very least - the eyes a little sensitive about lightand everything right now. Which is why in the photo in the right I have to pull the eyelid open. It's too sensitive right now to want to open very far. It also keeps weeping, but at least with the patch off that can run out of the eye and be cleaned away. Hopefully it doesn't take to much medince with it. The entire area where I have the new cornea is recessed from the surface of the eye around it. I hope it is meant to be.

Through all this the pain is much less then you might suppose - more limited to little stabs when I move the eyeball around or blink with only a faint constant sting.

It occurs to me that my age could now be expressed as a 20 year range...this could confuse people I expect. :)

Update: Actually as with a lot of photography the trick is to get the light to do the right thing. Its an overcast day outside and I have an opaque bathroom window. Any more light then this might have been painful but looking towards the window wasn't very hard and I was able to get the light to reflect off the stiches. You can also see the window, with fine curtains closed and the hunched up shape that is me with my arm and mainly camera blocking the window light.

Also in the hour or so since I took the bandage off and put medicine in my eye has settled down a lot. Blinking is getting to be less noticeable (though I am still holding it shut as I sit here). For some reason I feel a little off today, I think I will go and lie down.



Update to the update. What you are seeing is not the light reflecting off the stitches which are in fact tiny and I may never get to show up in a photo, what you are seeing is the light reflecting off the area where the new cornea was placed. The whole area just inside is recessed from the surface of the eye around it. I do hope it is supposed to be like that, I guess it is. Another update I had a call from the surgery about making a follow up appointment. I mentioned the recess, they passed the message on to Dr Maloof and about 5 minutes he rang me and after sounding a little puzzled realised how closely I was looking at the eye and told me that this was due to the stitches being done up very tight pulling the new cornea flat and that it was deliberate and how it should be. I guess I am just being overly cautious but I had not heard of this before. He told me to expect me vision to get worse before it gets better.


Operation day and the following early morning


Everything seems to have gone fine. At least the doctor said he was 'very pleased' with the way the operation went. Not that I saw him after my operation but this was relayed to me by the Anaestheticist. I have yet to open my eye. The Anaestheticist and staff were all very nice.

Just before the operation Dr malood said he was confident that I would get 6/9 (20/30) vision from the eye - enough to comfortable drive with the eye. I would be quiet happy with this result, but am wondering if maybe I might not even get a little better.

There is not a lot of be said by me about the operation. I was given a general anaesthetic intravenously which took a few minutes to take affect. I was surprised that they didn't even get my exact weight before hand. They also stuck a needle into my eye and gave me a local anaesthetic in the eye however which apparently meant the general anaesthetic didn't have to be too strong. I hadn't expected this, but the cornea is the most sensitive part of the body they tell me and I wasn't going to argue.

The local anaesthetic was supposed to wear off around midnight, it's 7:30 AM as I update this and the terrible pain some people get has failed to materialise. I was told I may not feel much pain...the nerves have been cut so they cannot send pain signals now and it will take a year or two to grow back my reading on the net would have be believe. Actually I am still a little wobbly on my fee and weird feeling but I have had worse plain in my eye several times this year then what I have now, it is a little sore but not very and I haven't bothered with the painkillers yet but maybe I will as I think it may still be getting slightly sorer as time passes.

I hardly slept the night before and only slept for a few hours tonight yet am not tired. Odd. I must have really power napped with that general anaesthetic!

In a few hours I will take the bandage off and it will be interesting to see what my vision is like. My vision however is expected to change - possibly for the worse before improving again - over a few weeks, and for the first month or so by tightening and loosening stitches they can adjust the cornea and my vision if necessary...it's very likely that this will be necessary. I am booked in to see Dr Maloof again in a bit over a week. Hopefully the date is written down somewhere cause I don't remember it! I will also see my local optometrist a couple of days before then who may be able to shed light on whether the cornea will need to be adjusted and if so how.

I am pretty happy and excited to see what my vision will be!

I feel a little odd; I might lie down for a little. I do however feel much much muich better then some of the testimonies I found online about similar - but not exactly the same - procedures. I am not sure if my doctor was better, the difference in procedure is responsible, or maybe the operation just did go really well, but in any case no complaints from me!

[Update:  When I said I didn't see Dr Maloof after the operation; there was a rumour that he talked to me when the anathetic was still wearing off, but I have absolutely no recollection of this.  However as he let tme arrange to have the opperation start a little later then he initially planned, and had a following operation I have no complaints that he didn't talk to me afterwards.  He seems to have done his job well for which I am gratefuly!]

Monday 1 December 2008

I am going to get a cornea from a 51 year old female. I will know exactly where my feminine side is! :)

Actually I am told it is a very healthy strong cornea, and that plenty worse corneas have been used successfully for my operation; so should consider myself lucky.

The staff have been very helpful, ringing me whenever they have an update for me, which is prety much daily.

Friday 28 November 2008

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!

Wednesday 26 November 2008

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.