Devastated KC sufferer did Cross linking

[Grim10]

Glad i found this forum, hopefully I can get some help from people in situation like mine own

Short story, I had a corneal transplant in my right eye in 2005 (the first in 2001 was redone)
I have with glasses quite good sight, about 9/10.
The left eye has been left untreated, I saw prior to cross linking that eye 7/10 with glasses.
I red about the cross linking treatment, and to no be forced to do a transplantation in that eye as well in the future, I went to the hospital to do the cross link treatment.

I am so dissapointed, I was there this friday ( 6 months after treatment) for a checkup. Now seing only 1/10 with glasses. The doctor said we will wait another 6 months since the healing and progress can continue. After reading the internet most vision progress ( cause first 2 weeks everyone sees blurry) should be within 3-6 months. Also I feel betrayed since the doctor did not tell med that vision could get worse...

Any experiences would be greatly appreciated.

[Anne Klepacz]

Hello Grim10 and welcome to the forum
I'm sorry to hear of your bad experience. Unfortunately, no procedure is risk free. While research studies on crosslinking are generally very positive, I've seen several which say that a small percentage result in greater shortsightedness, though that's usually losing one or two lines on the Snellen chart whereas yours seems to be more than that. I think there is some evidence that changes can continue for a year or more after crosslinking, so I hope you do see some improvement eventually. Maybe one of our experts can tell you more.
All the best
Anne

[Grim10]

Thanks for the answear, I would really appreciate more comments so I know if I am waiting for improvement in vain or not....
Frustrtaing is tha I saw alot better before the precedure, and my cornea has gott more "out os shape", more irregularities altghough measured astigmatism is less..

[Grim10]

Honestly, I see 34 views, not a single person besides Anne can give some comments on my post. Thought we were here interested in helping each other or is it just is people only interested i reading other peoples missery?

[Jezzafletcher]

Hiya - sorry but never had cross linking. Had cornea graft 14 months ago. Just had keratotomy due to misshapen cornea - no real progress. Have developed cataracts in both eyes so got to deal with that next. Prognosis? No idea - it all seems to take so long to settle etc. tbh as time goes by I realise that the more you have done than the more chance of complications but I still stick with it & hope. I also see how many "view" posts but don't comments - it's their prerogative - some will have KC and will be deliberating taking that first step of joining the group by reading, some have a professional medical interest, some are interested but when they read they then realise they have no words of wisdom to offer & others just read. I guess that's just how it is... But if one person with KC reads and then takes the quantum leap of joining and contributing then that is an achievement. No comment from "viewers" is a reality.
Hang on in there - I'm sure someone can contribute more than I can!
Good luck!
Jez

[longhoc]

Hi Grim

I didn't reply initially to your post for a couple of reasons. The first is that old enemy, time ! There's just never enough of it unfortunately. Quite often I''ll read something and want to respond to it, but not having the time to do so straight away have to come back to it later. I do hope you'll forgive all of us who contribute here -- on occasions we don't get the chance to get back to someone immediately. We're all just volunteers too -- we do wish we had the luxury of paid support services, that would really make our day Everyone who contributes on this Forum does so out of the goodness of their hearts. It restores my faith in human nature that so many are willing to do this for no other reason than to provide assistance for those who might need it.

Secondly, related to the first, any way forward for you and anyone else in your situation isn't that simple to document. As Anne has already rightly said, and what Jez is actively practicing, the eye heals slowly and you have to let it. Annoying though it may be, it responds in its own timescales, not the ones we might want ! So it would be wise to follow the advice you've received from the professional treating you -- you will need to wait several more months to let the healing process take its course. You are certainly not waiting in vain as you put it. No responsible clinician would do anything until at least 6-12 months post-procedure had elapsed. And the more time the better. You need a stable state from which to work from where the eye is concerned. Attempting to have follow-up treatment before the implications of the last treatment are know is a recipe for disaster. So you’re getting the correct advice from the professional concerned. That does not of course make it any less frustrating...

That said, the time is definitely right to think about what might be necessary in the future and start having those dicussions. Obviously the natural question in the back of your mind -- which you quite rightly want an answer on -- is "but what if it's not okay ? what then ?" In other words, if post-crosslinking, suppose your vision isn't what you'd want it to be. You do have several options. These include:

1) Glasses or lenses. Have you had an optometrist attempt to get a refraction based on how your eye is now ?
2) Implantable contact lenses or Intacts (these may not give full correction if you’re left with a high degree of long or short-sightedness or astigmatism but they may improve the shape of the eye assisting with getting good results with glasses)
3) Further procedure(s) to improve the shape of your eye. Is this something that you’ve discussed with the ophthalmologist who is looking after you ? (if you’re not sure what you’re going to have to ask about, let me know, I can provide some more information for you here)
4) A graft

If you can let me know what you’re already covered in the clinic, we can step through what’s not yet been put on the table. Doing that will help to show that there are things which can be done and you’ll not simply be stuck in an unsatisfactory situation indefinitely.

One final thought. Tempting though it is to get resentful, both about the disease process we’re dealing with and the on occasions less than successful outcomes we end up with from the professionals treating us, try if you can to not fall into that trap. When you undergo an interventional procedure there’s always a chance that things could go wrong or not turn out the way you’d hope. When they wave that consent form under our noses and we sign our name on it, it’s not done for fun. The warnings it contains are there for our information and protection. Because not everything the medical profession does is a guaranteed success. We all go into these things of our own volition. Somewhere in our minds we know that, so when we end up not really where we want to be, we either blame ourselves or blame the professionals as a proxy. If you can get past that – and it is definitely not easy and it certainly is understandable – you free yourself to move on and make your next set of choices. That sort of "inner healing" takes as much if not more time and effort from the individual as the physical side. Those annoying "if only I had..." or "if only I hadn't..." 's seem to have a life of their own sometimes.

Best wishes, fingers crossed that things sort themselves out over the next few months, but as I say do let me know if you want more detail on the potential “next steps” we’ve covered.

Chris

[harker]

Sorry to hear this, Grim. It does sound very unusual.

How thick was your cornea before the procedure?

[Grim10]

Hi Grim

I didn't reply initially to your post for a couple of reasons. The first is that old enemy, time ! There's just never enough of it unfortunately. Quite often I''ll read something and want to respond to it, but not having the time to do so straight away have to come back to it later. I do hope you'll forgive all of us who contribute here -- on occasions we don't get the chance to get back to someone immediately. We're all just volunteers too -- we do wish we had the luxury of paid support services, that would really make our day Everyone who contributes on this Forum does so out of the goodness of their hearts. It restores my faith in human nature that so many are willing to do this for no other reason than to provide assistance for those who might need it.

Secondly, related to the first, any way forward for you and anyone else in your situation isn't that simple to document. As Anne has already rightly said, and what Jez is actively practicing, the eye heals slowly and you have to let it. Annoying though it may be, it responds in its own timescales, not the ones we might want ! So it would be wise to follow the advice you've received from the professional treating you -- you will need to wait several more months to let the healing process take its course. You are certainly not waiting in vain as you put it. No responsible clinician would do anything until at least 6-12 months post-procedure had elapsed. And the more time the better. You need a stable state from which to work from where the eye is concerned. Attempting to have follow-up treatment before the implications of the last treatment are know is a recipe for disaster. So you’re getting the correct advice from the professional concerned. That does not of course make it any less frustrating...

That said, the time is definitely right to think about what might be necessary in the future and start having those dicussions. Obviously the natural question in the back of your mind -- which you quite rightly want an answer on -- is "but what if it's not okay ? what then ?" In other words, if post-crosslinking, suppose your vision isn't what you'd want it to be. You do have several options. These include:

1) Glasses or lenses. Have you had an optometrist attempt to get a refraction based on how your eye is now ?

Yes, did that. I see 1/10 to previous 7/10 with glasses

2) Implantable contact lenses or Intacts (these may not give full correction if you’re left with a high degree of long or short-sightedness or astigmatism but they may improve the shape of the eye assisting with getting good results with glasses)

Interesting, my doctor did not mention this

3) Further procedure(s) to improve the shape of your eye. Is this something that you’ve discussed with the ophthalmologist who is looking after you ? (if you’re not sure what you’re going to have to ask about, let me know, I can provide some more information for you here)

Thought laser would be an idea, but my cornea in this state is obviously to thin

4) A graft

Yes, I know. however I did CXL basically to stop the disease and prevent a future need for a graft

If you can let me know what you’re already covered in the clinic, we can step through what’s not yet been put on the table. Doing that will help to show that there are things which can be done and you’ll not simply be stuck in an unsatisfactory situation indefinitely.

Nothing really, as I said. I did the CXL to "freeze" the disease and vision. Now my practitioner says we need to wait another six months. The reason for my vision deterioration is increased index of surface variance (ISV). According to several studies one of the mentioned below, corneal variance typically do not change much between 6 and 12 months. So what is my doctor expecting, a miracle?
Steven A. Greenstein, BA, Kristen L. Fry, OD, MS, Peter S…
One year postoperatively, the index of surface variance (ISV) was significantly decreased from baseline…….. (Although the index de- creased between 6 months and 12 months (mean change ␣2.72 G 14.2), this change was not statistically significant(PZ.11)

One final thought. Tempting though it is to get resentful, both about the disease process we’re dealing with and the on occasions less than successful outcomes we end up with from the professionals treating us, try if you can to not fall into that trap. When you undergo an interventional procedure there’s always a chance that things could go wrong or not turn out the way you’d hope. When they wave that consent form under our noses and we sign our name on it, it’s not done for fun. The warnings it contains are there for our information and protection. Because not everything the medical profession does is a guaranteed success. We all go into these things of our own volition. Somewhere in our minds we know that, so when we end up not really where we want to be, we either blame ourselves or blame the professionals as a proxy. If you can get past that – and it is definitely not easy and it certainly is understandable – you free yourself to move on and make your next set of choices. That sort of "inner healing" takes as much if not more time and effort from the individual as the physical side. Those annoying "if only I had..." or "if only I hadn't..." 's seem to have a life of their own sometimes.

Best wishes, fingers crossed that things sort themselves out over the next few months, but as I say do let me know if you want more detail on the potential “next steps” we’ve covered.

Chris

[Grim10]

Sorry to hear this, Grim. It does sound very unusual.

How thick was your cornea before the procedure?

Not really sure but assume that the cornea was thick enough otherwise my practitioner would not let me undergo the procedure

[Grim10]

Just to clarify things..
I had CXL done 7 months ago. Best vision with glasses dropped from 7/10 to 1/10 following the procedure at 6 month follow up.
Astigmatism i less however ISV (Index surface variation) is the problem and has increased. My cornea is more irregular then before the procedure.

My doctor want to wait to see what will happen in another six months, however studies show that ISV does not really change much between 6-12 months. Major changes occur in the interval 3-6 months.

I feel this is all meaningless to wait even more. Has anybody the experience from XCL how long time for eye to heal and surface to stabilize?