David Bishop

Well, I guess it must be about two and a half years since I had my cross linking treatment done. Seems like a good time to give an update on how things are now!

I now live in Bristol rather than Devon. When I was living in Devon I would have a yearly check-up with the doctor that performed the cross linking. When I first moved to Bristol I was going back to Devon to see the same doctor though this has become a little impractical. So, got a referral up in Bristol. Which worked out well as the referral was to an NHS doctor so doesn’t cost me anything now!

Basically my last eye check-up at the hospital was around the start of January 2012. My eyes had remained unchanged. I had the operation only in my left eye, as the Keratoconus hasn’t really taken hold at all in my right eye. I always thought I didn’t have it at all in the right. Though on my last check the doctor said I do, just in the very very very early stages. Which, perhaps it has always been like, as I recall when I had my first consultation before the cross linking the Doctor told me you could say from what you see it has developed in the right eye but because it’s so early it could be something else. Think it’s stayed the same since I’ve known about the condition in the right eye and it’s simply a matter of opinion whether I have it yet in the right!

I was getting my eyes checked yearly in Devon. The eye hospital in Bristol have arranged checks every six months, think this is just a difference in opinion (ah Keratoconus, so much opinion, so few facts, it’s a frustrating condition!) as to how much they need checking. Personally I’m happier to get them checked more often as just more likely to catch anything I guess! The optician I was seeing (not going back) who clearly didn’t have a clue about the condition told me I could just get my eyes checked every two years! Personally I’d not leave them two years, so much could happen in that amount of time!

Having said that will still go to the opticians (a different one of course!), but still unsure how beneficial this is. I guess it is as the check-up seems something different than what the eye hospital does. At the eye hospital they get me to read letters on a chart briefly then use the scary wheel turning light machine and finally have a chat with me about it all. Opticians seem to do lots of stuff with different lenses and what not, which is (I’m guessing) maybe pointless as I don’t wear my glasses anyway, find them annoying and I seem to get by just fine without them. But, still it’s another eye check and I like to get them checked as much as I can! I think that’s important as it’s such a random condition, Keratoconus. It can go unchanged for years then suddenly rapidly change a lo in a short space of timet. So probably worth doing too!

Anyway, currently just watching the right eye to see if Keratoconus takes hold in that eye, and the left to make sure the cross linking keeps working! The Cross Linking to keep working for ten years. My biggest struggle at the moment is to stop rubbing my eyes! Was rubbing them an awful lot, but I have eye drops now but still difficult to fight the urge not to rub my eyes, frequently just not possible! Just do it without thinking. But trying not to! As most will know with Keratoconus, it’s always best to try and avoid rubbing eyes. Excessive rubbing has been linked to the condition getting worse.

So two and a half years on I’m still very glad I personally went through with the cross linking treatment. If you have Keratoconus I’d certainly talk to an eye doctor who knows about the condition to see if it could help you. Unsure if you can get it on the NHS yet, really hope so. Seems you can get treatment at some NHS hospitals. If you can’t for some reason, I’d recommend the guy I went through (crossing linking wasn’t on the NHS at all when I had it done), Dr Habib: http://www.visionplymouth.com/ he is a very good doctor.

Check out more of my blog entries’ about my cross linking experiences by clicking here!

2 Comments | In: Kerratoconus | tags: C3R, Corneal Collagen Crosslinking with Riboflavin, Cross Linking, Eye, Kerratoconus, Medical, Treatment. | #

It’s been three months (I think) since I had my cross linking. I think it’s gone well, I don’t really even think about it anymore. Other then at some point I might need it in my right eye and hoping it will be on the NHS by that time!

I had a check up a couple of days ago and apparently I have in fact seen improvement in the eye that had the treatment! Which is quite rare as it’s meant to halt, but some people do see improvement. I can now read the bottom line on the 20/20 board with just my ‘bad eye’ which I couldn’t before. The Doc checked the eye and seemed to think everything was ok. So will see what it’s like a year after he first saw me, which will be January.

14 Comments | In: Kerratoconus | tags: C3R, Corneal Collagen Crosslinking with Riboflavin, Cross Linking, Eye, Medical, Treatment. | #

Well it’s pretty much exactly 14 days ago I had the treatment on my eye. As far as I’m aware everything is ok! Not seen the doctor since my last post but my vision seems fine currently. I believe on the letter I got from the doctor, after two weeks I can go swimming again which will be good as I was doing that quite frequently up until the treatment, I will double check that is right however! Still got another two weeks of the anti viral drugs and three weeks of some eye drops but neither physically or mentally effect me so all is well! Just got to remember to take them forgot a couple of times now with the eye drops and once with the pills!!!

So far I’m glad I did it, although still early days, I suppose it will be the coming months and years when I will know if it was or not!

I am hoping that by the time I need it in my other eye it will be on the NHS! Hope so anyway, not sure how long they take with this stuff, I know it’s in trial currently so who knows…

4 Comments | In: Kerratoconus | tags: C3R, Corneal Collagen Crosslinking with Riboflavin, Cross Linking, Eye, Kerratoconus, Medical, Treatment. | #

Well I am past the week point! Yesturday I had the bandage contact lense removed which felt a little werid for a little time after but went back to normal after a while. Not really painful just, you know, like something was missing…cause it was.

The Doc also checked my eye and it had healed over well, he said. I then had an eye test and the Doc said my left eye (the one I had treatment on) was back to where it was before, which seemed good, I think, as I had heard it could take longer. I don’t need to now see him for three months, and then I guess I’ll go back to the usual yearly check ups on my eyes to monitor the left eye to see if the treatement works, and detect when it develops in my right eye. Sounds like there’s a very good chance it will from what i know of the condition (think its 80% of cases do, might be more), but don’t think it has yet. Well I say that but, when I had my first consultation with the Doctor who performed the treatment he was saying that from all the scanning machines and what not it indicated there is evidence to suggest it could possibly now be at the stage of developing but it is still debatable, but at any rate the vision in my right eye is still good, I think!

I’m down to just to drugs now. I have switched from the antibiotic eye drops to I think to a different antibiotic eye drop and I still have some anti viral drugs to take twice a day still.

4 Comments | In: Kerratoconus | tags: C3R, Corneal Collagen Crosslinking with Riboflavin, Cross Linking, Eye, Kerratoconus, Medical, Treatment. | #

Well yesterday and today my eyes gave been nice and white, and fully open. Every morning there have been definite improvement so far. On the first day my eye was half closed and painful, the second day was still half closed but not to painful, I could feel it but that’s it. Third day my eye was full open but still blury, no pain. Today fully open still still blury perhaps less.

I have a few less drugs to take now, after today. I can stop taking one of the ones for pain in the eye from mid day and yesterday I stopped one of the eye drops which hopefully means I will feel ok to drive soon, need to ask the doctor I suppose though first.

I will continue to take the anti viral (I think it is) oral pill and the artificial eye drops and the antibiotic drops for another couple of weeks now. Getting better with doing the eye drops, was a bit of a concern of mine if I was getting enough in the eye but not to hard once you get the hang of it.

I don’t think I’m totally clear yet, I think risk of infection is usually in the first week so. I still have a couple of days. I can have the contact lense bandage removed next week I believe (week after op). I assume also the superficial layer of the cornea they removed will have grown back by now.

Currently I feel fine, and able to work. I work from home mostly so no need to drive anyway.

1 Comment | In: Kerratoconus | tags: C3R, Corneal Collagen Crosslinking with Riboflavin, Cross Linking, Eye, Kerratoconus, Medical, Treatment. | #

Well feeling better now I think I have worked out a good system with taking the drugs, there’s about seven of the damn things. A combo of eye drops and pills. I don’t like taking eye drops, it can be difficult to get them in your eye!

Pain wise I don’t think it’s been to bad, it was painful half an hour or so after the treatment but that went once I took the painkillers, came back a bit a couple of hours later but then pretty much went after a long sleep. Been sleeping a lot, think its the drugs.

My vision is slightly more blurred then usual, redness in my eye has gone down a lot. I have lost my glasses so I don’t know what its like with them on! But I can read text on the screen and what not.

Had a check up today where they cleaned the eye and the Doc took a look at it, said everything was fine at the moment. Next appointment is in a weeks time.

So, so far so good just got to make sure I keep on track with the drugs and if anything does happen, out of the blue, to ring the hospital!

1 Comment | In: Kerratoconus | tags: C3R, Corneal Collagen Crosslinking with Riboflavin, Cross Linking, Eye, Kerratoconus, Medical, Treatment. | #

Well I had the treatment at 2pm, was totally painless, a bit strange with the stuff they put in your eye and the UV light, a bit like a slightly unpleasant psychedelic trip with the just sitting there with nothing to do.

It was quite painful after the anaesthetic wore off, I took the pain killers they gave me. That helped slightly but still was quite painful so took the eye drop pain relief that you should use sparingly. The pains totally gone now. There’s so many different tablets and eye drops to take, it’s a bit over whelming especially when I was in a lot of pain. Taken some of them still need to now work out what to take and such like. Have an appointment tomorrow to check the bandage contact lense they put on during the treatment so I will ask then I think.

My biggest concern now is making sure I take all the drugs right! I can see mostly fine at the moment just goes out of focus frequently, not sure I could drive in this state, will see tomorrow.

Hope this all makes sense as proof reading has been a challenge, think i will go and lie down now.

4 Comments | In: Kerratoconus | tags: C3R, Corneal Collagen Crosslinking with Riboflavin, Cross Linking, Eye, Kerratoconus, Medical, Treatment. | #

Well I have to be at the hospital by 12, 09.49 now can’t eat anything past 10 so that’ll be fun! Feeling nervous a bit, my fear that something will go wrong has gone down a bit, but it was very high for a while last week. Still noring away at the back of my head those bad thoughts but what you going to do? Not much else to say I guess, just waiting now…

2 Comments | In: Kerratoconus | tags: C3R, Corneal Collagen Crosslinking with Riboflavin, Cross Linking, Eye, Kerratoconus, Medical, Treatment. | #

Well people that know me probably know I have a eye condition call Kerratoconus which is where a layer of the eye thins over time, for a proper explanation see this. It’s a bit of a weird one as it’s very very unpredictable. Some peoples site deteriorates a bit and stops, some peoples gets quite bad and they get to the point of a corona transplant (about 10-20% of the time). The problem is there is no cure for the problem, however since 1998 there has been this new treatment that basically has shown very positive results in halting and even reversing some of the effects, not sure on what the exact figures on it’s success rate, but think its pretty good, there are no absolutes.

After some thinking I decided to go ahead with this treatment. Unfortunately I can’t get it on the NHS so I will have to go…private. As some of you may also know because of my politics I’m not a great fan of private medicine so that was a bit of a hard decision to, but I trust the hospital and doctor as from what I understand the hospital is a charity hospital and has no share holders all profit is put directly back into the hospital. And the doctor is known as the best eye guy in the region.

As the treatment is new and is still in NHS trials (has EU drug approval) I have decided to plot my progress on a section of my blog for interested parties. I am booked in to have the treatment today so I will report back tonight if possible on progress for day one and so on and so forth. A lot of people, including myself for a while, seem to be on the fence with this treatment so I hope this blog will help people a little bit on deciding if the treatment is right for themselves or a loved one or just if people are interested in my left eye…

1 Comment | In: Kerratoconus | tags: C3R, Corneal Collagen Crosslinking with Riboflavin, Cross Linking, Eye, Kerratoconus, Medical, Treatment. | #