CXL Recovery Concerns - long winded post sorry!

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Fella65
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CXL Recovery Concerns - long winded post sorry!

Postby Fella65 » Sat 24 Nov 2012 12:52 am

Hi,

This is my first post to this forum. I live in the US, but after searching the web, it looks like this is one of the best places to get information and interact with other Keratoconus sufferers.

I had "standard" epi-off CXL in my left eye on July 2 2012, and I'm feeling some frustration and concern about the procedure. But before I go into that, I should provide a little background:

I was diagnosed with KC in 1989 at the age of 24; I am 47 now. I ended up with the diagnosis because I started noticing these weird "tails" coming off of the rear lights on the cars in front of me. My optician was flummoxed and sent me to a specialist who diagnosed me with KC in about 5 minutes

Interestingly, I was diagnosed with mild astigmatism when I was 7 or 8. This worsened over the years, so I suppose the roots of the KC were there from a young age. I should add that I was a chronic eye rubber when I was 4 and 5 years old. I can remember how good it felt to just rub my eyes.

Like most people, I had bilateral KC with the disease being far worse in the right eye. It progressed very rapidly in this eye, till I had no effective vision in a couple of years. My left eye remained stable and I was able to wear RGP lenses for over twenty-three years. So in this regard I have been lucky compared to many.

Fast forward to June 2010 when I decided to finally undergo transplant surgery with interlase in my right eye. I figured at 45 years old, I might as well try and get some decent vision out of an eye that was really not serving me at all. I consulted with a very well known cornea specialist/surgeon for the procedure. The transplant surgery itself went well, though I had complications due to a graft slip. This has led to some nasty astigmatism that I am still battling (2 AK procedures and a Lasik procedure later). Vision is ok out of the eye, but there are a lot of high order aberrations which make it all difficult to see well - especially up close. I am going to have a enhancement Lasik procedure done that will hopefully do away with some of the remaining issues.

The surgeon/specialist also started monitoring my left eye more closely, and over the past couple of years noticed an increase in astigmatism (1 diopter). With this in mind, we decided to perform CXL on my left eye. To be honest, I think it has been degrading slowly over the years, but it became more noticeable over the past couple of years - but that could be my imagination. In any case, so much for things becoming stable after 45! Keratoconus is truly unpredictable!

The CXL procedure itself was quite effortless for me - especially after having undergone a graft in my other eye. I didn't suffer too much pain until they removed the bandage contact lens after several days post op. It felt like half my epithelium came off with the bandage and I suffered several days of swollen pain. I also woke up one morning with some major haze that completely freaked me out. I called the doctor and he said this was normal. The major part of the haze resolved in a few days though for the first couple of weeks my vision was awful. However, it then started to improve. My distance vision in particular was impressively better, though close vision was not as good as prior to the procedure. While I was unable to make out any lines on the Snellen chart prior to the CXL, a month later, I was able to see 20/70!

Unfortunately, the improvement didn't last and my eye regressed to what it was prior to CXL. I had a 2 and a 3 month follow-up where they did all kinds of tests, and each time the doctor has said that things still looked good, but that we wouldn't know for sure till 6 months.

I have to say my near vision has never recovered to what it was prior to CXL. I should note it was not great then, but there was a specific distance from my eye that things looked in focus. Now I see a ghosting at all times

I am scheduled to see my surgeon again at the 6 month mark in January. However, in the past few weeks I have noticed that my vision has changed. I think for the worse. Even with my glasses on (They have bifocals built in), I am seeing things more blurry both at distance and especially close. It is especially noticeable and bad in lower light situations where I struggle to read anything e.g. a restaurant menu with my glasses on.

I went to my optometrist and he fitted me with some new glasses, and though they helped marginally, I'm certain that things are still not as good as they were a month ago. Now an interesting point is that if I put on another set of reading glasses over my current glasses (as I am doing now), things start looking much clearer for close to mid distance work. Maybe it is because everything is being magnified - though everything also looks "crisper"

I'm sorry for the long winded post to get to this point - I guess it has also been therapeutic to just write about my experiences; however, I was under the impression that things should be improving at the 4+ month mark post CXL (It will be 5 months on December 2nd). I feel that I am actually going backwards. Am I being impatient? Could healing be delayed because of my age?

I must confess that it is very frightening to not be able to even read smaller text when just a month ago I recall I could. I am extremely worried that either my Keratoconus is accelerating or something bad is going on post-CXL.

I should add that I went to my optometrist to get fitted for scleral's last week and they took a map of my cornea. They noticed a slight steepening in the cone for a year or so ago (from 43 to 49 microns) and a flattening in the central part of my cornea (I believe this is new post CXL - but I'm not sure). My cone is in lower part of my cornea. Part of my problem is that my optometrist and surgeon/specialist are in different parts of the country so it is difficult to get an apples to apples comparison i.e. I understand different instruments can give different readings etc

I would love to hear from some of the experts on this board as well as others who have gone through CXL and who could maybe shed some light on what I'm experiencing. I also hope that my story will be helpful to others. Please feel free to ask me any questions about my experiences with Keratoconus, transplant surgery, or CXL

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Re: CXL Recovery Concerns - long winded post sorry!

Postby longhoc » Sat 24 Nov 2012 9:57 am

Hi there Fella and a big welcome to our Forum.

I wish I could offer something concrete by way of information or advice -- but Crosslinking is not something I've had any experience with. Grafts, contact lenses and the healthcare business -- I can talk about these 'til the cows come home ! But not alas Crosslinking. Hopefully some of our resident experts or those with real-world experience will be along soon to offer what they can.

My only generalisation is that anything to do with the eye takes a long time to heal. As you'll probably remember from your graft, things don't happen quickly and it can get frustrating. The other week, I went for a 3 monthly check-up post having all my stiches out. I was expecting to be whizzed into getting lenses or being able to discuss refractive surgery. I was told that 3 months was the absolute minimum for lenses, 6 months is better and a year for any surgery. Not good if you're not a patient patient !

So with a bit of luck, it might just be a question of time. But as I say, hopefully someone who knows better than I can give an opinion.

Best wishes

Chris

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Fella65
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Re: CXL Recovery Concerns - long winded post sorry!

Postby Fella65 » Sat 24 Nov 2012 7:13 pm

Hi Chris,

Thank you for your reply. Indeed this is a disease that requires patience, and yet it is sometimes so hard to be patient. I'm still working on the vision in my grafted eye, and its been over two years, so I hear you!

I really look forward to hearing from folks who have CXL experience. It is still an experimental procedure here in the states (ie it has not yet been approved by the FDA - Food & Drug Administration). That means there are only a few doctors (albeit it excellent practitioners) performing the procedure, so it is difficult to get feedback from other patients and healthcare professionals on real world experiences and expectations

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Re: CXL Recovery Concerns - long winded post sorry!

Postby Claire Harrington » Mon 03 Dec 2012 11:18 pm

Hey there,

I had cxl back in September and think i can relate to the fears around eye sight issues.

From the research that I have read I understand that the improvement in vision isn't a guarantee with everyone, it effects a high number which is positive but its the topography improvement that's improvement.

I read in one article that it can take over 12 months for results to show noticeably so it may be that we both experience irregular vision as time goes on. I personally would love to notice a difference in my sight but can't say its any better now than it was. I worry that even if my eye sight improves my glasses at the moment won't help as they will be stronger than i need...who knows!

Another point I would make is you have had full epi removal, you need time to allow this to heal in full. It may be different in the states but here if you have cxl the consultants don't want to see you for at least six months after your initial post op check cause you need to allow for healing and even at six months you'll only be getting a sense of early results that could continue to change over the next six months.

I think its difficult not to be impatient, we want to know its worked properly and there is hope that it will help stop the condition so hold on to that and lets keep our fingers crossed for it not to have any further negative effect on our eye sight, I share your concern and hope sincerely everyone who has cxl has a positive experience.

Claire
"The Wise find at least one reason to laugh each day even it's at themselves"

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Fella65
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Re: CXL Recovery Concerns - long winded post sorry!

Postby Fella65 » Tue 04 Dec 2012 7:20 am

Hi Claire,

Thank-you for your encouraging words. You are so right, it's so easy to become impatient. Unfortunately things do take a long time to heal with the cornea. I should know this from my transplant experience, but it's human nature to want things to happen quickly.

Here in the US, the doctors do follow-ups at the 1, 3, and 6 months. Then I think the next check-up is at 12 months. I think the reason for the earlier follow-ups is that CXL is done under an experimental protocol that requires that kind of schedule.

With the exception of a few corneal specialists, we are definitely way behind the eight-ball on CXL and other advanced treatments for Keratoconus such as Keraflex. CXL is not generally available, and I believe there is only one doctor approved to do a study for Keraflex over here. I don't understand why this is the case as medicine is, as with most advanced industrial nations, generally first rate here. I suppose different countries have their respective areas of expertise and advancement.

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Re: CXL Recovery Concerns - long winded post sorry!

Postby Claire Harrington » Tue 04 Dec 2012 8:00 am

Morning!

It is amazing the difference between countries. I'm being interviewed about my cxl experience online in the next couple of weeks by an American Optomotrist who wants to show case crosslinking. I'll pop the link up when it's polished and complete. :-)

We are lucky in the UK to have some of the best treatment available to us, and like you say cxl hasn't got its FDA approval and here the National Health Service (NHS) do provide cxl but only in three locations at present so it's not widely available, so whilst it is offered as a pay for service privately and people have the freedom to opt for it if they wish, it isn't completely endorsed by our National Institute of Clinical Excellence (NICE) but there are positive signs that this will change with NICE currently reviewing these guidelines.

I feel impatient for January to arrive - this is when my next follow up appointment is and I am really trying to adjust my expectations to not have some transformed cornea but I really hope I can take some positive from it. I think if I am true to my feelings I will go in there expecting good news and have my hopes dashed when it's not (and thats just the one eye!)

I've got campaigny about all things KC since I decided to have cxl, I am blogging about it and running the Twitter account for our support group and I just wish there was more research and investment in the background of KC and what can be done in the future, I just hope that having had cxl we are part of a statistic that can develop and show in the future that is a positive treatment for anyone who has KC at a level where it can be halted. It would be great to have some solid clinical backing in paper to make it more widely available and raise the confidence in the treatment, I guess we do need time for this to happen! I know it's a calculated risk we have taken not knowing the full long term effects of the treatment, and I genuinely live in hope that this will help many others in the future.

Claire
"The Wise find at least one reason to laugh each day even it's at themselves"

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Fella65
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Re: CXL Recovery Concerns - long winded post sorry!

Postby Fella65 » Wed 05 Dec 2012 3:29 am

Good luck with your follow-up Claire. I hope CXL is resoundingly successful for you!

It's great that you are getting the word out about KC. Most people are completely unaware of it. I think given relatively new technology like CXL that if there were more awareness people would seek medical help sooner, and the disease could be caught and arrested before it progressed to far.

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Re: CXL Recovery Concerns - long winded post sorry!

Postby Lynn White » Sun 23 Dec 2012 12:14 pm

HI Fella

I am a UK optometrist who has followed a good number of patients post cross luinking.

I presume you are now not wearing RGPs at all? I am not sure if it was explained to you that rigid lenses mould the cornea and that when you come out of them, the cornea takes time to go back to the original shape. The more years you wear rigid lenses, the longer this takes to settle down. Added to that fluctuation are the changes induced by CXL. Thus I would entirely expect vision to go up and down for several months if you are demoulding from RGPs as well as settling from CXL. Glasses simply can't keep up with these changes, so it is inevitable that your vision will fluctuate.

I went to my optometrist and he fitted me with some new glasses, and though they helped marginally, I'm certain that things are still not as good as they were a month ago. Now an interesting point is that if I put on another set of reading glasses over my current glasses (as I am doing now), things start looking much clearer for close to mid distance work. Maybe it is because everything is being magnified - though everything also looks "crisper"


You are at an age where near vision starts to deteriorate, which is why you need reading glasses. If you now find you have to put on "extra" reading glasses, this may mean the overall power of your distance glasses is "too strong" at the moment. This is not because the original glasses were wrong - it is because there are continuing changes in the power of of your cornea as outlined above. Younger people can focus through these changes, so that, unlike for you, near vision is not affected any more than distance vision.

In my practice, I tend to advise people who have worn RGPs for many years to move to a specialist soft lens (such as KeraSoft) and wait until they are reasonably stable before having CXL. This tends to reduce the "double whammy" of demoulding and CXL changes. It also means you can get back into soft lenses within a couple of weeks of having the procedure.

It is also quite normal for VA to improve, then go worse, then improve again post CXL. This seems to be an adjustment effect of the corneal collagen fibres becoming stiffer.

Hope this helps and please ask if you want more information!

Lynn
Lynn White MSc FCOptom
Optometrist Contact Lens Fitter
Clinical Director, UltraVision

email: lynn.white@lwvc.co.uk


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