9 months later - around half way will the stitches are scheduled to be removed.

Its now about 9 months since my operation.  I haven't updated the blogfor a while.  Partly this is because my eye doctor says I am far from a typical case and originally part of the purpose of this blog was to let people know what to expect.  The other reason that I haven't written for a while is that my eye has not been bothering me very much.

My eye has been largely free of pain the last 6 months or so.  It's also a lot less sensitive to light/wind etc then it was before the operation.  I am not sure how much to read into this as I am still on steroid eye drops (maxidex) which have a powerful inflamitory affect.  The real test will be when I come off maxidex.

My total vision from both eyes is pretty good and I am pretty happy with it.  Thats said my vision in the eye that was operated on is not great.  I can see 6/12 well and can probably get 9/12 just.   The amount of prescription needed by my eye has significantly and steadily decreased over the last 6 months, while my vision has maybe improved slightly.  Most of the decrease in the prescription needed for me eye is due to removing extra stitches that he added to hold my cornea steady.   These are one off stuicthes that he added after the first operation failed and he has not ever used them before.

I think my astigmatism is around 1 diopters and my short sightedness is around 2 or whatever they measure this in.  I'm not confident about that measure of short-sightedness.  At any rate its within what galsses should be able to correct effectively and not so different from my right eye that the difference should cause complications.

My eye doctor is puzzled that my vision is not better.  When looking through a pin whole the eye can see  20/20 or better which suggests the issue is from my cornea.  He said he has done worse lookoing grafts and had patients get better vision from them then I have.  The topography of my eye looks okay.  Last time I saw him he was thinking about getting me to have a wave anaysis done on my eye, which should show where the light is going and why its not reaching my retina in an optimal way. 

There is a real chance that my vision will increase when the final stitches that go all the way around the outside of my cornea are removed.  There is also a chance that this will not help.  Untill I get a wave analysis done I don't think there is anyway to know why my vision is not better now.  I'm due to see my eye doctor in about 2 months and if my vision hasn't imporoved more by then I expect that the wave analysis will be the next thing he wants to do.  Given my total vision from both eye is pretty reasonable I'm not too concerned but I guess I will get it done.

While the vision hasn' t been as good as promised, if the comfort continues when I come off the medication the reduction in pain will make it worth while.  The eye does work wel enough for me to have good depth perception.  It's good to be freed from the hassle of managing a gas permiable contact lens.

2.5 months later

I saw my surgeon again 2.5 months after the latest attempt at a cornea graft.   My eye continues to show much better signs then it did last time at this point and there is no reason to think that everything isn't going to plan.

Dr Maloof said he had never had to redo a graft like this before and he couldn't altogether explain why it hadn't worked last time and now seemed to be working. As well as the ring of sticthes he did say he had addded a few more to help prevent the graft from moving.

Strangely without glasses I actually cannot see much better then last time - this time it appears I am quiet short sighted!  However more importantly the cornea seems pretty stable and when I look through the lens I can see better then I ever could following the last transplant - and the vision could still be improving!  Hopefully in the next 2-4 weeks I will be able to be prescribed glasses which will be pretty much in the usual time frame for this sort of thing.

I don't have to go to Sydney to see Dr Maloof again for three months!

This post is about two weeks late.   However I went and saw the surgeon again.  He told me when he removed the old cornea he found it was soft and not properly formed.  So removing it appears to have been a good choice as it was unlikely to come good.  On the other hand we still don't know what happened, but apparently the cornea may have gone wrong since it was grafted on to me.  Which is a little discouraging as the same thing could happen again.

That said the eye does seem to have been less painful then last time.  It's not all good though I've been back at work two weeks tomorrow, but several days days I've had to work reduced hours or even today not at all which is very annoying - and I think it shows a slower then typical recovery.

1 week on

I had another transplant 1 week ago.  My eye is still very sore and very very sensitive to light.  However it hasn't had the really intense periods of pain as badly as it did last time so I am hoping thats a good sign.

I was surprised by the surgeon saying to me as I was wheeled in that he was going to make the new transplant .5mm bigger then the last one.  It didin't seem much bigger at first but the first one was only 9mm so .5 is a bit.  If my calculations on the surface area of a circle is right then its approximately 11% bigger - which might be enough to be significant.  THe cornea is really more like part of a sphere then a circle which probably makes it slightly larger again.

The idea is that if the donor cornea is stronger having more of it in my eye should make my eye stronger.  Last time he said that 9mm was a big implant however so I guess he was approaching as big as they can be done?  Tey do have to leave a little of my cornea so the surface will grow over the donor cornea.

My eye is too light sensitive to really look at the screen as I type this so hopefully there are not to many typos!

I've taken no photos this time.  It looks very similar to last time.  Possibly it was slightly more red...or I wasn't taking photos last time when it wwas at its most red.

The operation was supposed to be today...but there were no donor corneas available and so it maybe be a few more days before it goes ahead now. 

Interesting;y I found an article on the web about how the EU is later this year starting widespread use of artificial corneas.  Who knows how long that will take to reach Australia - or if it will actually produce a better result or just be a way of getting around a shortage or corneas.

giving it another go

yep in early June I will give the whole mdalk (stromal transplant) thing another go.  Who knows for some random reason it might go better this time...

16 months later and bad news

I'm just back from the doctor and this time the advice I got was very different to last time. Last visit I was told my vision would 'definitely' end up very good - 6/7.5 was mentioned as a minimum.

I found that very encouraging around the end of the year I was beginning to think the operation was a failure and I might have to get it done again or have further treatment such as collagen cross linking.

This time it was Dr Anthony Maloof who said he was really disappointed with the performance of the cornea which is a different shape everytime I see him. He said the options for treatment were:

Collagen cross linking to toughen up the cornea. However while this seems very good for stopping the gradual change in a cornea associated with keratoconus there was no guarantee it would be able to stop the greater variations that my eye was going through. He also said that it could take up to 12 months before I got the full benefit of that and already a lot of time had been spend stuffing around with my eye. I had noticed that too!

The other option would be for him to perform a new partial thickness stromal transplant on the eye. This was the option he recommended. He admitted it may not work better. If the issue was with the donor cornea (which apparently cannot really be tested while it is in my eye) then it would fix the problem. If it was because somehow the donor tissue and my tissue did not join properly there was a good chance it would not happen again. If the issue was with my tissue around the donar cornea changing shape...well lit would probably continue to the same after the operation. I imagine there are other possibilities as well but they are the only ones discussed.

bleh so I'm not very happy about this. I have bunch of questions to ask him. I've started some allergy desensitisation which will probably take several months - should I finish this before the operation. I noticed this year my eye (probably because of allergy) was much worse around january - should the operation by then NOT done in december like the last two? Last time I found wearing a soft contact lens greatly reduced pain - given it turns out inflammation can lead to issues with healing should I preventively wear the contact lens?

I'm going to have to ask my optomitrist if he thinks there is a trend for the changes to my eye decreasing and what he thinks about having the operation again. I'm wondering about getting a second opinion though I am not sure from who given Dr Maloof is supposed to be a leader in this type of operation.

I do remember on my first checkup maybe two weeks after the operation talking to another pateint who was doing much better then me...is that cause operations disagree with me or just this one.

He says he would be happy to do the operation under a local anaesthetic if I thought I would be ok with that. hmmm.

Dr Maloof said I am the first patient of where he thought he had to try to take the stitches out early to stabilise the eye. I am also the first where after this amount of time he has offered to do the procedure again in order to get a stable eye. SO much for a normative blog for others to read! He said that this time he would not charge more then medicare and my health fund would cover.

The next bit will probably bore the causual reader but I'm going to put some readings up....if nothing else it may make it easier for me to refer to them again!

25th Jan 2010. 48@82 41.2@172 +1.75/-5.00@150 vision with this prescription 6/9

After operation to correct curvature:

9th Feb 46.8@72 42.5@162 +125/-5/50@150 6/21

2nd March 46.0@66 43.0@156 +125/-500@135 6/15

6th April 2010 45.7@65 42.8@155 +1.75/-600@135 6/12

as you can see the vision is constantly improving since the trama of the feb operation - however each time the prescription is different which means its all pretty theoretical and I have actually had no prescription lens during this time. They take 2 weeks to order...it would be out of date by the time it arrived. Yesterday (13th April) Dr Maloof took new readings. he didn't tell me what they were only that there were quiet different from the readings on the 6th April and that the corrected vision was actually worse. It will be interesting to see what Andrew Watkins get when he measures me next - which will be as soon as he will see me next.

I've also got hardcopies of lots of pretty topographical maps taken over this period. The Topological maps show the curvature of the cornea. It should be constant. Where it is red it is too steep. This makes the eye stick out more - or be in a "cone" shape which is where keratoconus gets part of its name from. Here are comparative topolgical maps from Feb and April - you don't have to understand them to see that they are quiet different. My right eye taken over the same period shows minor difference - I don't think it has really changed so maybe there is some level of error in these measurements...even so these are quiet different. I just noticed the numbers at the bottom of the topological graphs which show more readings with different astigmatism! I'm not really sure what the diagram on the left means. (anyone care to share?)

(Click on image to view larger)

Good news

It seems my cornea has stabilised which is good. The shape wasn't too bad but it wasn't ideal. Dr Maloof to my surprise was able to do a small operation on my eye to improve the astigmatism. It is only possibly to change the curvature in one direction with this technique. It was about 6.5 dioptres and he was aiming to reduce it by approximately 3 dioptres. He says he doesn't reduce by more then 3 at one time.

Anyway I'm feeling positive about that and Dr Malood himself told me I will end up with good vision - eventually. He said he expects at least 6/7.5 which I think I would be very happy with. :)

13 months after operation and 1 after the stitches were removed

It's now a little over a month since the stitches were removed from my eye. I cannot see much better then before they were removed. The topography actually looks worse. I'm a bit annoyed I seem to keep getting my expectations up only to have them dashed again. The promise that I would get the same vision with glasses after the operation as I did before (in three months) seems very far from being met. I was surprised when I received it - so much so that I rang the Doctor and made another trip to Sydney however on being told it emphatically three times I believed it and based my decision to have the operation on it.

I am going back to see the surgeon in early feb. From the last visit it seemed like there was two things he might recommend to me.

Firstly collagen cross linking. He suggested this as a possible way to correct my vision. However after reading everything I can find on the internet about this process it seems to me very unlikely that it will significantly correct my vision. The procedure has a good record for preventing further deterioration - if he tries to recommend the treatment to me for this reason I will have to thing about it seriously. However if he continues to promote it as a means to improve my vision as he did the last time that I saw him, I will need to be convinced that there actually is any evidence of the operation being sucessful in producing significant correction and that this would be likely to appy to me.

The other thing Dr maloof suggested was a drug. I've forgot the name, I am bad with names but it started with R had a "e" and probably a "t" and a "s" I'm sure I would recognise the name. It's fairly new, expensive and not readily available in Australia but supposedly it's much more affective at eliminating allergy symptoms then anything else that does not have serious side affects. Anyway apparently *now* I am told the inflammation from allergies could cause the eye to heal with less then perfect vision.

I don't know what good addressing the allergy problem after 13 months of healing will do for the eye. I will have to ask if the would be likely to improve at this late stage. In any event I would definitely be interested in trying a drug with little side affects that can eliminate the side affects of allergies on the eye. In one of my first posts back in november 2008 I noted that often my right eye has the mostly soreness. This continues to be true and sometime I worry that its vission will be badly effected. Also since writing then I have become fairly convinced that this issue is to do with allergy probably to pollen.

I have reached this due to the following facts.

1. While my eye always seems to have some of these symptoms it seems like in 2008 the symptoms were increasing in oct and nov just before my operation, in fact thinking this was part of a long term trend they encouraged me to go ahead with the operation. In 2009 the symptoms followed a similar pattern.

2. It is possible that the symptoms are just sever case of "dry eyes" which could be expected to be worse in the hotter summer weather - however much use of lubricating ointment and drops provide only limited relief of my symptoms. Also my eyes get better and worse quiet dramatically from one day or week to another which to my limited knowledge "dry eye" would not adequately explain. However it seems that pollen counts in the air can vary greatly from day to day. Also looking at a website that predicts pollen counts it seems like my symptoms often are worst when high pollen counts are predicted. I only discovered this web site recently so I will have to continue to evaluate how hight this correlation is.

Canberra it seems has particularly high levels of pollen. I don't have significant other allergic symptoms which is why partly why I have not looked into this further before. I did see an allergy specialist who from a prick test conformed I am allergic to some types of grass - he also didn't think I probably had a major allergy problem. Since then my symptoms have worsened and apart from the eyes I will don't have a problem with allergies.

In retrospect I wonder if most of my problems haven't been due to allergies - possibly if they could have been dealt with I would not have needed the surgery at all. Possibly if the allergy had been treated with operation would have gone better. Who knows it still may not be allergy - patanal eye drops seem to only improve my eyes to a limited extent and zytec another eye drop for allergies does even less. It would seem my eyes are still able to confuse but it seems like a good thing to try a stronger allergy drug. Possibly a holiday to somewhere with less pollen in the air would also be good and may provide interesting information. It seems my eyes are slow to reveal their secrets.

I started this blog hoping it would make the choice to have surgery easier for others with keratoconus, to let other people know what to expect and even to show that the partial thickness or stromal transplant was a good way to go. Obviously I am somewhat disappointed and my results have not been as promised. At times I've been tempted not to write about my sub optimal results but I figure that if people only write about their positive experiences this would only give a false impression. (Plus it seems good to keep a record of my symptoms, decisions and thoughts who knows what may have some medical value at a latter stage.

I may well be a very atypical case. In theory the stromal transplant seems to make a lot of sense and if you really need to have the operation I would recommend you look into this and hope you find it easier then my to get statistics on the operation. However - I can also advise caution, sometimes things don't work out as well as might be expected! Make sure you really really need the operation before you get it, you may find that you don't see so well after it as you did before. I guess at some stage I may be able to wear contacts again - if so apart from time, pain and money I shouldn't have lost much! :) Actually my cornea is closer to the correct shape now then prior to surgery so just possibly fitting a contact will be easier - I've heard that post transplant a cornea may be easier to fit - but I have also heard they often are not.

I'll probably write again early feburary

Good news 12 months on.

Two days short of a year after the operation I had my stitches removed. This was 6 months earlier then usual but the doctor seemed to think they may be responsible for the problems I have been having.

I got them removed under local anethetic and sure enough when he cut the first one it felt like a rubber band being broken and the doctor said that there was a lot of tension on the stitch and this was a good sign that the cornea was likely to move after the stitches were out.

The next day was extremely painful, now its two days later and the computer screen with the brightness lowered is still to bright to look at for long periods. My vision has been misty since the stitches were removed though that seems to be improving and through the mist I can definitely see much better then I have been able to see for months. I'm told that it will probably take a month before the cornea stabilises into in a new shape - right now however my vision is so much improved I am feeling rather optimistic (again)! :)

Well 11 months after the operation and my cornea continues to change and this increasingly is a mystery. Last time I saw my surgeon he told me that it would be best to leave the sticthes in for the full 18 months. Now however he seems to think they should be removed 6 months early - or in about 1 month.

He must be hoping that the changes in my cornea are due to the stitches though I don't think there is really any evidence for this. Already my astigmatism is worse then what before my operation the surgeon claimed was the worst outcome for one of his patients so maybe he's getting desperate. It is likely that the astigamtisnm will change a lot (maybe for the better) after the stiches are removes they tell me optimistically. Today he seemed to have gone away from the collagen cross linking idea at least for now.

My attempt to wear the contacts didn't get very far due to discomfort and I don't think there is much point in continuing with that for now as after the stitches come out I just may be able to wear glasses and my contacts would very likely have to be changed. I could not see as well with contacts as I could before the operation which I hope will not always be the case. I was lead to believe it would be easier to fit me with contacts after the operation - if that is true it must be along time after the operation.

edit: BTW my astigmatism which I was so happy with after the operation when it was 2.0 is now well over 5. Because of this and maybe other factors my vision with glasses could only be corrected to 6/15 - far from the 9/9 I was promised!

10 months on

Well I went to my optometrist today. He said "Wow dude your eye is like all different shaped again"* So much he rang up the surgeon. The surgeon said. "Yeah its like freaky, I've never seen anything like it before"*.

So yay for me, I'm special - like everyone else.. Oh well the eye had been more comfortable since the operation. I just cannot see with it very well. Thank goodness its only one eye.

Anyway I got a bit fed up with waiting for my eye to co-operate and settle down so that glasses could be prescribed for it and decided to try hard contacts again. At least they should be able to work even if my eye does continue to change slightly, and just possibly the new cornea will be able to tolerate them better then the old cornea could.

The surgeon who has done hundreds of these operations really did say that he had never seen this before so perhaps the purpose of the blog - to let other people know what to expect from the operation - isn't really going to work so well....

I'll probably update again in a week or two when I have the contacts.







*original meaning is retained but exact words may be changed in some quotes.

blah

Well I tried a contact and it hurt and didn't help my vision. But The optometrist is going to order me a new one and we will try again in about a week.

better news (7 months after the opperation)

Yes I've been to see the surgeon again and my news is better then I feared. Apparently the folds I mentioned earlier between the donor cornea and the remains of my old cornea are tiny and should not negatively affect my vision.

So what is the problem? Well it's something around the edge of the cornea. The doctor temporarily covered the edges of my cornea and this allowed me to see very well!

Apparently a cornea is often around 11 mm in diameter, a traditional cornea transplant is about 7.5mm - they don't want it too big as it increased the risk of rejection. This wasn't an issue with the layered transplant they did on me so they replaced a 9mm area - anyway it's possibly that there is still some light being reflected into my retina from the crazy shaped old bit of my eye. It is also very likely that the stitches in the outer few mm of my cornea (see pictures below) are mucking up my vision either directly or by pulling the cornea out of shape immediately around them. So...if thats the case my vision should improve a lot in around 12 months when the stitches come out!

In the mean time it's hoped that I will be able to get decent vision by wearing a gas permeable (hard) contact lens. Yes this sounds a little like going in circles, as I had the operation because hard contacts were causing problems BUT it will be good to know that I can still get my vision corrected by a contact - at least it's not gone backwards! Also the new thicker tougher better shaped cornea in theory should fit a contact much better and also be able to withstand the wear and tear of a contact better! Well that's the theory anyway. Latter this week I go to try and get fitted with a hard contact lens. I'll report how that goes.

I still think a profession that produces half the results in double the time, and then charges you to ask whats happening is a onto a good thing! ;) I am however feeling much more positive about the eye, and it seems that it is very rare to have as many difficulties after the operation as I am. After all for about 5 seconds I saw very clearly with it yesterday! I'm not sure but I think 9/9 (or 20/20) There may be some hope for it yet! :)

(Oh and just for the record in case somebody cares these days my astigmatism is about 2.5 somethings - diopters I think?)

6 months on

It's been a while since I posted anything.  I kept thinking I might have good news soon - but it never quiet happened.

So I was promised there was a small chance of complications but short of that my vision would be 9/9 after the operation.  Definitely.   In three months.

Now it's 6 months and my vision is still around 5/9 - so I am not very happy about that.  It must be nice to work in a profession where you can tell people they will definitely get better vision, in half the time, and not give a refund!

Anyway on the other hand my eye *is* more comfortable then it was.  It's still not perfect and the stupid vision at times gives me minor headaches.  The vision still changes a bit by itself and more so when I try new glasses, something I have done a couple of times now.  I think the latest change only made things worse and I will have to change back. 

I don't know maybe my expectations were too high or maybe I am the odd case where the operation doesn't go so well - however I really would recommend treating the operation with a LOT of suspicion.  In retrospect I don't think I would have gone this way quiet so quick - though perhaps I would have in the end as I was running out of options.  Get your optometrist to show you how bad 5/9 vision is before you do anything - you may end up seeing like this!  I guess it depends on how bad your vision is how scary this will seem.

surprised

I went along to my optometrist today wondering if I was wasting bother out time but my vision was bad and seemed to have perhaps got a little worse plus and it was giving me mild headaches so I wanted to see if anything could be done.

He confirmed that the prescription for my eye had changed - the amount of correction needed had almost halved! I was quiet surprised to know it ha changed this much, but it can only be good.

The bad news is that even with this change I still could not see very clearly at all. It seems that even with the cornea in the right shape the internal optics of the cornea can disuse the light so that vision still sucks - which is why I had only just noticed a fairly big change in lens prescription. As far as I can work out that's what is happening to me. I've no idea if this can be expected to slightly improve over time or if it means that no matter what the surface of the cornea does I will not get good vision. It would be nice to know.

My optometrist volunteered to ring my surgeon which I am grateful for. I didn't tell my optometrist this but I had tried to ring him a few times myself but he hadn't returned my calls. Maybe an optometrist will have better luck getting his attention....

3 months later

My operation was on the 4th of December. Tomorrow will be the 4th of March about 3 months later. By now really I was expecting my vision to be probably close to 9/9 and my eye to be comfortable. Instead my vision is probably not quiet 6/9 and I continue to need drugs for my eye to stop inflammation, mucus and bad things in general. Even with drugs its not really comfortable.

I've been on maxidex a week and a half longer then I was originally supposed to after two unsuccessful attempts to change to FML. Tomorrow I change to a combination of voltarin(sp?) and FML drops. It would have been today but the chemist had to get the drops in from Sydney. My eye pressure was check yesterday by the optometrist and is normal- one of the many complications of steroid drops like maxdidex is that it can get dangerously high. Dr Maloof still doesn't want me to stay on it any longer then necessary which sounds like good sense.

Maybe its just taking longer then expected and it will still heal up - at least so that it is more comfortable. It's hard not to feel a little discouraged however. I think maybe I will give Dr Maloof a ring today and see if I shouldn't visit him and see what’s going on with the eye.

My eye does appear to have stabilised enough for me to be able to get a lens for my glasses prescribed. Hopefully I will get it this week, which should be a nice improvement in vision for me.

Pictures of my eye (10 weeks and 5 days after opperation)

Here's a picture of my eye taken about a week(?) after the operation.
And here it is again today:

It's a lot clearer, which is why the stiches are much more visible. In news that is not so good, today the vision corrected with glasses was only 6/9. My optometrist said that if this didn't improve it would be "disappointing", however he was not confident that it would improve a lot. 6/9 is (just) good enough to drive a car and isn't a disaster - but I was hoping it would be better. Its also not as comfortable as I would like, but the optometrist is confident that as the last of the healing completes it will become more comfortable.

My astigmatism today was still 2.75 - however the axis it was on had rotated somewhat. I will go back in two weeks and see if it has stabilised enough for me to get glasses prescribed.

Yes their is blue light shining on my eye! :)

astigamtism 2.75

20 Jan
I went back to the surgeon. He had a look at my eye, measured my astigmatism (but didn't tell me the measurement). He told me that it was so small that if he tried to change it it he was just as likely to make it worse.

28 Jan
I went to the optometrist 2 days ago and was told that my astigmatism was now 2.75. 0.75 worse then 1.5 weeks after the alteration to my stitches. Apparently this could still change but with glasses shouldn't stop me getting very good vision. I am still not seeing very well - but the surface of my eye still has to heal, and apparently there are some other bits in the cornea that are still healing up too. Which makes sense - the eye is still a bit sore and I am having drugs (steroid drops) to settle it down. I am going to have to wait a bit longer before I get glasses prescribed.

I was told it could take three months from the operation before all the healing is complete - that will be first week of March.

I expect with my table tennis I can use better eye sight then most....so I do hope 2.75 isn't too much!

Meh I amn back to wearing glasses. I am also at work, ( my eye has settled down a bit since waking up). What would I know?