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Update! Six months since graft (right eye) and Corneal Collagen Cross-Linking (left eye)

February 22, 2012

Hi everyone.

Firstly, apologies for the ridiculous lack of updates over the last few months. I would love to say it was because something dramatic and exciting had happened, but unfortunately it just comes down to a combination of overindulging on alcohol over the festive period, and pure laziness! However, there have been a few developments since I last posted here, so I thought now was a good time to let you know how things are progressing. There have actually been developments with regards to both eyes (I was diagnosed with KC in both eyes when I was 16), but I’ll start with my right eye which is the eye I had the graft in.

So it’s now been exactly six months since I had the graft in my right eye, and everything continues to go as well (if not better) than I could have hoped. I had an appointment with my consultant Mr Morgan early December and as usual he was extremely happy with how the graft was looking- no loose stitches, no sign of rejection and even though the vision was still lacking clarity, he wasn’t too concerned about this. He said that the aim now was to start training the eye to become used to focussing again, and that we would do that by prescribing me with glasses that have a strong prescription in the right eye. I subsequently went for an optometry appointment in which I was prescribed with a pair of glasses, and the optometrist told me he would see me again in six months.

I’ve found that the glasses do definitely make a small improvement in the vision of my right eye. It’s not a major difference at the moment, but they certainly add a bit of clarity to my vision which isn’t there so much when I’m not wearing them. I was also surprised recently at one of my consultations to find that I can now read the fourth line of the chart unaided with my right eye, whereas in October I could only read the second line at best. In the same way that a person’s vision can deteriorate so gradually that they almost don’t notice (a trait often associated with KC sufferers due to the cornea’s shape changing very gradually over time), it seems my vision has been gradually improving over the last few months and I just hadn’t realised.

Mr Morgan said that I’m now in a ‘quiet period’ with regards to my right eye- it now just needs time to heal so that when the stitches are finally taken out there’s no danger of it coming apart. Once the stitches are out this should hopefully improve the vision further and then I can begin to get fitted with new contact lenses (or even glasses) to make the vision as good as it can be. It has been a long process, but I was fully prepared for this before I had the graft, and actually with regards to my day to day life there has been virtually no disruption- you can’t see the stitches because they’re so small and most of the time I actually forget I ever had a graft done. I’m also now down to just one steroid drop a day, so even that isn’t a major hassle.

I keep thinking back to where I was at this point last year- the fear that went with knowing I would probably need to have a graft and the uncertainty of how it would turn out. I found that once I’d actually made the decision to go ahead with the graft I immediately felt so much calmer about it all- as if I’d known all along that I’d come to the end of the road with regards to all other options and this was the only way forward. My advice to anyone currently in the same position as me (I must stress- I’m defining ‘the same position’ here as having tried all other available options open to you) would be to research thoroughly, think long and hard, but ultimately to not let the bad experiences or ‘what ifs’ that you read about on the internet scare you away from a graft. I understand that everyone is different, and in a very small percentage of cases things may not go as planned, but in my own case I could not be happier with the decision I made and I’m so glad that I made it.

Ok, now onto my LEFT eye! I mentioned earlier that the nature of KC can often mean that a person’s vision deteriorates very gradually, almost without them noticing. This can be especially worrying when it comes to KC, as a change in vision means that the KC itself is progressing, and if the condition progresses past a certain stage a graft is often the only option. This is why it’s so important to have regular eye checks and- vitally important- topography scans of the surface of the eye to monitor the progression of KC.

I’d been aware for a while that the vision in my left eye was starting to deteriorate. It was a small change- I could still read the same line on the eye chart etc- but it was a change nonetheless. I found that I was having to wear glasses to gain more clarity when reading or watching TV, which I’d never needed to do before. Although I’ve always had KC in both eyes, my left eye has always been my ‘good’ eye, and so I became increasingly concerned about the possibility the KC was progressing in that eye. In January when I went for my consultation with Mr Morgan he requested for me to have a topography scan on the eye, and confirmed what I’d suspected; there hadn’t been a major change in the shape of the cornea, but it was slowly starting to change shape over time.

Having already had a graft in my right eye, Mr Morgan was extremely keen for the same thing not to happen with my left eye, and so immediately suggested that I have Collagen Cross Linking performed- a procedure which aims to strengthen the collagen links in the cornea using riboflavin drops and so effectively halt the progression of KC in its tracks. I was concerned about having the procedure done, purely because I’d read that the vision in the eye after the procedure was really blurry and the vision in my right eye was still nowhere near what I wanted it to be, but I knew that I couldn’t put this off and so we arranged to go ahead with the procedure.

So last Tuesday (February 14th) while everyone else was busy going out for romantic candlelit meals and wading through piles of Valentines cards, I was lying on a bed for an hour having the front layer of my cornea scraped off and staring at a purple light for an hour! The procedure itself was quite uneventful and, dare I say it, relaxing at times. Firstly they put anaesthetic drops into my eye to completely numb the area and make sure I couldn’t feel anything. Then (this is the bit that may cause people to flinch), Mr Morgan scraped away a thin layer off the cornea. The reason they need to do this is so that the Riboflavin drops can absorb into the cornea. Mr Morgan did actually mention while he was applying the drops that a new kind of riboflavin drop is currently being developed that would actually be able to absorb into the cornea without the need to scrape a layer off. Since this is the aspect of the procedure which causes the most pain and discomfort afterwards, and also carries the risk of infection, that kind of riboflavin drop would be ideal and hopefully won’t be too long in reaching the NHS stage.

Having the layer scraped off didn’t hurt, but it was a strange sensation- I could feel the pressure on the front of my eye, but no pain. Once this had been done the next half hour involved me lying as still as possible as Mr Morgan put riboflavin drops in my eye every few minutes. It was a long process, but everyone around me was quite friendly and we just spent the time chatting. It was quite a relaxed atmosphere (and once again I’d like to say that I can’t praise the staff at Sunderland Eye Infirmary enough for their professionalism). After half an hour a lamp beaming UV light was placed directly in front of my eye and the next half hour involved me staring directly at it as Mr Morgan continued to put the riboflavin drops into my eye. At the end he placed a bandage contact lens on the eye to help protect it and reduce the pain. The whole procedure lasted about an hour and I was able to go home as soon as it was over. I was given a set of steroid drops to place into the eye four times a day for 2 weeks, and a course of antibiotic drops to place in the eye four times a day for a week. I was also given some painkiller drops, as I was told the healing process could be quite painful (which it was!).

My vision after the  procedure was extremely blurry- I couldn’t manage to read any lines on the chart and I had to hold my phone really close to my face to see it. Luckily I found that the vision in my right eye was actually not as bad as I thought it would be, so overall I was still able to cope. I’d been worried that I literally wouldn’t be able to do anything with my good eye out of action, but while it was a bit of a struggle I found I could definitely still read a computer screen etc.

At first the pain wasn’t too bad, but once the anaesthetic had worn off it was pretty bad. It basically felt like I’d had a huge scratch on my eye (which I suppose in a way I had), and as a result the eye was extremely watery and red. The pain came and went over the next 48 hours, but at times it was quite uncomfortable- much more than I’d remembered my graft being. (I actually can’t remember having any pain with my graft). But fortunately the moments of intense discomfort would only last half an hour or so before the painkillers kicked in.

The vision continued to remain extremely blurry for the first four days, and I was starting to get concerned how long it would last, but then suddenly on Sunday I noticed that the clarity had improved dramatically. The pain had completely gone too, and over the last few days the vision has almost returned to what it was before the cross linking. This is probably what surprised me the most, as I’d read that it can sometimes take months for the vision to return. Again, whether I’m a typical case or not I don’t know, but the whole process was nowhere near as disruptive as i thought it would be. Like the graft I’m just glad I’ve had it done now and can start looking forward with regards to getting contacts fitted again etc.

So that’s me pretty much up to date now! I have an appointment with Mr Morgan in two weeks to assess my left eye, and then over the next few months I’ll probably be having more topography scans to see if the cross linking has worked. My right eye will continue to be monitored, but it’s not showing any cause for concern and i think the plan is just to leave it as it is for now and let the healing process quietly do its work.

Apologies for the length of this post! I’ll try and do them more regularly from now on to try and avoid these essay length ones. As usual I’m happy to answer any questions, so if you have any please feel free to get in touch

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8 Comments
  1. Christine Moore permalink

    Thank you for your very interesting account of your procedures, my son who is 20 had the cross linking done last Thursday 26th April and was lucky enough not to experience the pain you had. I was interested to read about DALK as he has been advised to consider it for his other eye, he unfortunately has no vision at all in this eye due to the kerecatonus, was your DALK done on the NHS or did you have to go private, I would be really interested in your comments please and any information you could give,
    Many thanks, Chris

    • Hi Chris, thanks for your comment and I’m glad your son didn’t experience the pain that I did!

      With regards to the DALK transplant, I had mine done on the NHS, and would definitely recommend that route. When I was first considering having cross linking done a couple of years ago (but didn’t yet qualify for NHS treatment since my KC wasn’t progressing yet) I decided to go for a private consultation and was surprised to find that the person I saw at the consultation was also one of the surgeons at my local NHS eye hospital. I discovered that a lot of private practices will be run by, or employ, surgeons who already operate within the NHS, so you’d basically be getting the same surgeon whether you went private or NHS, it’s just that private would cost you!

      Also, because DALK is quite a complicated procedure success rates tend to be higher when the surgeon has had more experience of doing them. I’m assuming (although it just an assumption) that a surgeon working within the NHS will be carrying out more DALK procedures than a surgeon working privately, and will therefore have more experience and a higher success rate.

      The only area I could see private being preferable to the NHS is the time it takes to have the procedure. I was on the waiting list for three months, which is considered quite normal, although some people have been known to have to wait longer.

      Hope that helps!

      • Christine Moore permalink

        Hi Thanks for the information. My son had an appointment come from the NHS at Moorefields which was for 4months after the referral, due to this we were concerned of the length he would have to wait.
        In the end we went to Centre for Sight at East Grinstead, what an amazing exprerience. Mr Daya did his surgery in July and he in fact had the femosecond DALK. He is at present experiencing some sight gain on some days but not on others, this is what were told to expect. Ok it has cost a lot of money and will continue to do so if things dont go well (no reason to think that will happen though) but the service he recieved at the Centre for Sight was exceptional and continues to be so at each check up. I hope things contine to improve for you and I would be interestd to hear from you.
        Regards Chris

  2. Great post. I had bilateral cross-linking here in the States and that part of your post sounds like what I wrote, but mine drones on with lots of random details! Amen on the pain (ow!), sooo sleepy in the procedure (1.5 hrs) I wanted to take a nap, and I got at least 5 lines better in my “bad eye” within 2 weeks, so way better than pre-CXL. The “good” eye was slower to get improvement, so might have been like your eye. I got 2 more lines on that one and have totally symmetrical vision again. Yes! Sort of similar stories, no? Oh, then the rubbing on your eyeballs… Just gross!

    I think getting CXL bilaterally is really a bad idea, but I got KC less than 2 yrs ago (late-30s) due to Ehlers-Danlos syndrome (EDS)–which I was FINALLY diagnosed with via a geneticist after getting into the CXL trial–and I was progressing like crazy! Super crazy! Plus, the eye doctor misdiagnosed me for nearly a year and I’m so mad!! I would’ve just maxed out my credit card earlier and had more vision now. Terrible doctors out here–wish I were in the UK but too rainy! My healing has been very slow due to the EDS and the light sensitivity is horrid! I drive a little at night but am stuck during the day due to the light/sun and ghosting.

    I’m just shy of 6 mos post-CXL, too. Do you have dryness? I am still not producing tears (zero) and no one can seem to tell me why this has happened. I use a lubricating eye ointment 24/7, which is like having the post-CXL vision when I put it in (lol) and just want to get contacts, even though my vision is much better. I still feel like I’m slowly improving w/the myopia and keratoconic vision, but near-work is as bad as ever. You’re right about not realizing you’ve had any improvement. I feel like I go through a fluctuation for about a week where things are worse and then I pop back with slightly better vision. Go figure! I saw a doctor today and I could make out her face–even a scar she had. 2.5 mos ago I thought I could see her, but not w/that detail. Odd!

    Would love to hear where you’re at now symptom-wise in the CXL eye if you have any… Hopefully you’re doing better than me! Thanks for sharing and sorry so long (my posts are even longer!).
    Alisa

  3. jarlath brady permalink

    hi there
    i was advised by my consultant to get cross linking done on my left eye as i have kc but he spoke of a problem as i had a graft done in this eye back in 1995 so theres a possible chance of regecting the graft! i also have kc in my right eye but cant wear any form of lens as my cornea is scarred from ulcers i got in 98. so you can see my problem. if i get the crosslinking done and its a failure im up the creek and even if its a success then how long do i have to wait before i can put a lens back in that eye again. and if i dont get it done then theres a chance that the kc can get so bad that i cant wear a lens at all. i gonna get a second opinion but would appreciate any advise

  4. I had my first graft done eight years ago and so far I have not had any issues with it. I just had a graft on my other done in January so far I haven’t had any issues. I wish you luck.

    • Thanks Robert. Sorry it’s took so long to reply- I’ve been a bit lazy with the blog recently! It’s great to hear you haven’t had any issues since you had your graft done. How have things been with your recent graft? Steve

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  1. Update! Six months since graft (right eye) and Corneal Collagen Cross-Linking (left eye) « Keratoconus GB Living with KC

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