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.