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.