UK Keratoconus Self-Help and Support Association

Hi everyone

I'm 26 years old, male, from Estonia. Left eye grafted. No KC symptoms in right eye so far.


1981-199? - vision is perfect.

199? - regular appointment. Doctor detected a little minus on both eyes. He recommended me to get glasses.

199? - I try on my friend's glasses. Wow, I can see details again. I think it is on my own interests to get glasses. It was just a thought. In the school I find myself more and more sitting in the first or second line.

2006 spring - no major issues. Still a little minus (-0,5) on both eyes, no big changes. No glasses or any aids. I'm just too lazy to get ones. From time to time I rub my eyes. Maybe it is caused by PC - i'm a hobby programmer and music producer.

2006 summer/autumn - I am 24 years old. I detected accidentally, that my sight on the left eye was quite drastically decreased. I don't know why, but i'm not very concerned. I think maybe it is temporary. I cant read subtitles on the TV screen with my left eye. All is quite fuzzy. Notice, that it is only a 3-4 months later!

2006 autumn - I have to renew my driving license. Aaargh...i have to make an eye test for that you see. Visited my doctor. He asked me, how is my vision. I said it is OK

2006 winter - I have almost forget this problem. No big changes, still fuzzy. Once again I try on different glasses - plus and minus, and i am surprised - none of them glasses did not change the vision on the left eye at all. When minus corrected well my right eye and vice versa - plus made it very fuzzy, then absolutely no changes in left eye. Even with strong glasses. Now i am a little bit more concerned.

2007 April - I decided to visit doctor. I was afraid to tell her that it was lasted almost a year. I just said that it is lasted "a few time". Well, she tried different lenses and some weird stuff and he was quite surprised - no success at all. Hihi, I knew that Yeah, but it is not funny anymore. I was quite concerned. She also asked have there been any traumas or something and some other necessary questions. I just said no, no, no....Doctor just scratched hers neck. He looked into my left eye more and more closely and she said that there is an extravasation in my left eye. Now I was more concerned. He asked me to go fast to the casualty ward. I told my story again. She did the same procedures but this doctor was a little bit smarter - this is the first time I hear a word "Keratoconus". She did not see any extravasation. She explained me, what is Keratoconus, pathophysiology and cause, Surgical options etc. I was told, that corneal transplantation is the only effective option. I was shocked. To be sure that this is really a keratoconus, she directed me to the another doctor, who was dealing with keratoconus about 20 years. Appointment in May.

2007 April - same day. I open my internet browser and search for "keratoconus". A lot of information. I am concerned and peacful at the same time.

2007 May - this doctor made a topography for both eyes. Diagnose - keratoconus on the left eye. Right eye - no symptoms, yet. He also explain about different treatment options - contact lenses and surgical options. I don't know why, but he did not recommend corneal transplantation. He was interested to try different lenses. To not spoil my summer, he asked me to come back in September.

2007 May - same day. I walked to the hospital, where my keratoconus was first diagnosed and lined up for corneal transplantation.

2007 summer - almost forget that i have keratoconus.

2007 September - I'd have to visit doctor to try different lenses. Well, i am decided to do corneal transplantation.

2007 1. Dec - 6 months after line up for transplantation. Saturday. My mobile phone rings. Hmm, strange number. A male voice asks am i ready to come to the hospital in 3. Dec for corneal transplantation. I say "YES". I'm shocked, peaceful, happy and concerned. Overall, I slept well this night

2007 2. Dec - one day to go. I am quite peaceful and not nervous at all. I pack my stuff.

2007 3. Dec - BIG DAY. In the morning i am still quite peaceful. My father drives me to the hospital. I meet my surgeon. He explains me exactly, what he is gonna do very nice and slow. He also explains, that it do not feel anything. He was right. They made a local anaesthetic. I mean i saw and heard all:) It was strange, but interesting. Procedure went well but surgeon was concerned that i was too uptight during procedure. I think he saw it from my eye And yes, i really was uptight. But luckily all went well. Here is picture - http://www.hot.ee/alvin18/eye.jpg

2007 5. Dec - back in home. Eye is really sensitive and sore. I feel much more comfortable with eye clap. I can watch PC and TV screen only with closed left eye. Maxidex drops 5 times per day. Eye salve Tobrex 2 times per day.

2007 13. Dec - back to work No major issues. Little discomfort on the left eye but it is not a big deal. I am able to work with PC for 8 hours. Eye sight is a little bit better than before graft.

2008 3. Jan - regular appointment. They removed one stitch because it caused a little pain and was loose. 4 Maxidex drops per day. They did an eye test and told me that vision is 70%, whatever it means.

2008 11. Jan - joined with this forum.


2008 Jan - I decided to watch every day my wall clock from constant distance to recognize any changes, good or bad.

2008. 05. Mar - I made "Eye Test" program to test my eye sight. You can find it here:

viewtopic.php?f=1&t=4199

or

http://www.martellorotativo.com/eyetest.html

Well. I tested right away and result was 7th line of 12.

2008 09. Apr - regular appointment. Vision is 80 %, so it is better. Surgeon is concerned about my eye pressure. I have to take some pressure drug "Oftan Timolol" now 2 times per day. Also Maxidex now 2 times per day. Surgeon ask me to come back in 21. April to tighten my stitches and "play" with them to correct vision. Probably he will remove some stitches too It is good and waiting forward.

2008 10. Apr - I see 11th line after about 10 seconds concentrating and focusing, but blurry.


All the best,
Alvin

Alvin

Thank you for the detailed diary in which you have set out your journey.

I'm looking forward to the next installment!

Andrew

2008 20. April - In the evening i felt like there is a lot of grits in my left eye. Very uncomfortable. It lasted about 4 hours and then it was gone momentarily. Strange.
2008 21. April - Appointment. My surgeon removed half of stitches today There is still about 9 stitches, haven't count yet. It is about 5 months after graft. Procedure lasted about 10 minutes. Right after that i had to drive back to work via centre of a town. Extreme I also told him about my problem which was yesterday, he only asked is there still this pain. I said no and hi didn't comment it anymore and began to remove stitches. Now the eye is quite sore and sensitive but it was expected. Next appointment in 18. jun 2008.

2008 23. May - One months after removing half of my stitches. Everything is....usual. My vision was a week or two, after removing stitches, better than ever, almost like my right, non grafted, eye. But now it is usual again, same like before removing stitches. I think it is good. There is still 8 stitches left in my left eye. Today I felt something like I did on the 20. April - something like prods my eye or eyelid, it is a little bit vague. It feels exactly like there is a grit or dust in the eye. If I don't move my eye then I don't feel nothing, looking to the right or left, it is a little bit painful...hard to describe. Maybe it is caused by tip of stitches? Has anybody experienced this too? Or should I be worried? It lasted about 3 hours and then it was gone momentarily, absolutely gone. There is weeks when I don't feel anything, and there is day or two, when I feel this. As I said, I mentioned it also to my surgeon but he didn't say almost nothing. Only suggested to use "Oxyal" eye drops to wet my left eye. I still use "Maxidex" 2 times per day and "Oftan Timolol" also 2 times per day to reduce my eye pressure. There is almost no redness, eye looks the same every day, vision is stable and my eye does not pain. Well, any suggestions or thoughts???

There is another thing I have noticed - in the weekends, Saturday and Sunday, when I sleep A LOT, my vision is little bit hazy or foggy. From Monday to Friday it is a little bit better. Seems like there is something to do how long I sleep What about you?

All the best,
Alvin

Alvin

I guess the weekend effect could be down to oxygenation: when your eyes are open they 'breathe' by taking oxygen from the atmosphere (corneas have no blood supply). When your eyes are closed they cannot 'breathe'.

Have you tried bathing your eyes? I guess that this would be a possible way of transferring oxygen that is already dissolved in the bathing fluid onto your corneas.

All the best

Andrew

ps have a look at this article
http://www.nature.com/nature/journal/v2 ... 292a0.html

Hi Alvin,
I am experiencing exactly what you are describing. it feels like there is something like grit in my eye- but only when i move my eye around. I had graft 5 Feb- so 16 weeks ago. I have had 2 of my 4 individual stitches removed, but my doc couldn't get the knot of one of these out, and said it would work its own way out. I think that is what i am feeling now. I am planning to go back for another check up, so will let you know.
My doctor says that the individual stitches work loose as the tissue heals, and that if they are loose they are ready to be removed.
I am also on Maxidex twice a day and more regularly when i have had the stitches removed.

Hi everybody, how are you? A little update.

2008 08. Oct - regular appointment. 10 months after op. Doctor checked my cornea. Pressure is still a little bit high (22), but stable. Vision is stable, but a little bit worse than before removing half of stitches. It was expected. It is due to optical effects (traction caused by stitches is not equal or something). Doctor said that my cornea looks ideal And i have good odds to get good vision. He will remove last stitches in November. That's good. After that, when cornea is stabilized, he considers to use laser to correct my vision.

Now "Maxidex" 1 times per every second day and "Oftan Timolol" still 2 times per day to reduce my eye pressure.

They checked my right eye too and it is stable so far. I am really worried how to manage if keratoconus will "spread" to my right eye. I really hope it wont. But as i have heard, in most cases it will

So, some big thing gonna happen soon and I hope everything goes fine!



Gr,
Alvin

Thanks for the update. I know how worrying it is to think of the same thing happening in your other eye, but I have always found wisdom in the old english saying 'never cross a bridge until you come to it'.

All the best.

Andrew

Yes, true!

In addition to Andrews comment, at least next time round you know what to expect and I found that made the whole thing less daunting.

ohh back in the days before there was such a thing as the internet and support groups!