Collagen Crosslinking ? ? ?

[Colin]

I've had the collagen crosslinking on both eyes, my first was no problem at all. however today I have just had the contact bandage removed on my second eye, and find my vision to be terrible.

I've noticed this more because its my dominent eye, and until now I had quite good vision in it, which meant I could get away with not wearing contacts.

just wondering if anyone else has had this treatment, and will my vision be restored to the point before I had the crosslinking done? I know my eye must still be healing, but got a shock to find I can see very little. (thank god I can touch type)

[Matthew_]

Colin,
I have no personal experience of this procedure and I am sorry to hear its not so good this time.
I am sure one of the others has more knowledge but I should have thought that it is early days yet. Perhaps your other eye responded so well that your expectations have been raised?
I hope it all works out for you, I really do.

[GarethB]

I found I noticed my KC more after having gone a period without seeing from that eye. In my case it was a black eye after rugby. It was as if my brain had forgotten how to compensate.

I wonder if you are experiencing a similar thing?

[Lynn White]

Colin

If you are worried about this you need to talk to the clinic where you had the cross linking done. Even other people here who may have had the procedure cannot give you any sensible advice since they have no idea of your case!!

There could be many reasons why your vision is not good - did you ask when you had the bandage lens removed? My advice is to ring the clinic and explain your concerns and see what they say!

Lynn White

[Sajeev]

Colin, did you find out buddy from your consultant? From patient to patient, it sounds like a relative thing? (from having a dominant eye and the vision recovery being relative due to that when compared with the other eye?)

[Louise Berridge]

Hello Colin,

I'm sure my response is late now and hopefully your vision is on it's way back to the way it was, if not better.

I had crosslinking last November in one eye and last month in my 2nd eye.
Your eye will be inflammed and disturbed from the procedure and it will take a few weeks to fully recover.
I had inflammation and a haze over my 2nd cornea for 4-5 weeks, following the C3R, so vision was unclear for this time. The 2nd eye was almost visually perfect, but the surgeon detected thinning at the back of the cornea. My vision has virtually now returned to how it was.

Has yours improved now?

Louise

[bluesfan]

Dear Louise:

I hope this finds you well. I have come across your post on the crosslinking, and as I am considering doing this treatment myself I would appreciate ANY feedback that you may be able to share. Now I now these must be questions that everyone would be eagerly asking and you probably have heard it all before, but the more information we can glean from fellow members in the same boat the better!

To what extent had your KC developed prior to C3R and has the progression stopped since then? Have you gained any flatness in your corneas or did you notice that the KC has reversed since having the C3R. Has your vision improved from before the C3R. Where have you had the procedure done and what whas it like for you?

Once again thanks for your time Louise and I look forward to hearing from you. Best wishes to you too with your eyesight!

[jackuria]

hello
I would like to share my experience of having had the C3R done, and hopefully forewarn some of you who are considering the operation.
I have advanced Keratoconus in both eyes, the left more affected than the right.

1. I had the operation done in March 2006 at the London vision clinic. This makes it around 16 months since.

2. The surgeon suggested three different methods for the procedure: (1) The one that the epithelium is rubbed/removed -takes longer to heal (2) a more superficial one whereby the epithelium is not removed -healing is very quick The Vitamin drops are put in and the ultraviolet light does the job. (3) A half way method whereby (1) & (2) are combined.

I chose the 3rd option which at the time I felt would give me the best of both.

3. The procedure was pretty straight forward, it took around 40 - 60 minutes all together and I went home with the soft lens bandage in both eyes.
I didn't experience much discomfort/pain.

4. After a few months post-op checks (3, 6 months) , I had the topography e.t.c done and there was signs that the cornea had flattened slightly, (astigmatism in both eyes had slightly increased though) however thats the end of what could have been a good story!!

5. During the course of the next 9 months to date, I noticed that my close/short vision had gradually deteriorated i.e prior to the op I oould read a book held 8 inches, post-op I was struggling reading 6 inches and this was getting worse.
My distance vision didn't improve much either, double vision got slightly worse.

6. My 14 month Post-Op check confirmed my worst fears. The surgeon told me that the C3R hadn't worked. Earlier checks had initially indicated otherwise, however the Keratocous progression had not been stopped in both eyes.(he mentioned that I was one of two people in the category -- didn't know what to think about that!!).
The surgeon then went on to suggest that we may need to start considering "TRANSPLANTS" -i.e a lamella transplant!!!

7. At the moment I am fairing ok with keratonic soft lenses. I get pretty good vision with this and can wear them for a long time e.g 14 - 16 hrs. However I've been considering the Flex lens recently. I am hoping this would sharpen things a bit more and be more reliable than the Keratonic lens which tend to vary (must be the fit).

Summary:

Before the C3R op, I had read alot about the procedure here in this forum and on the Net.

Great for those who have had a positive outcome from the OP (may depend on the method you chose), but for me its been no joy whatsoever, especially after coughing up £2500 and now my vision much worse than pre-op!!

For those considering the OP -Tread carefully -"all that glitters ain't gold".

[Sajeev]

Jackuria,

This is why for advanced KC, for a slight few, things don't work out for them, and why this treatment has always been said to be done early. Plus only the full Epithelium taken off method has the studies behind it (the other methods don't), also if there is advanced KC involved then Contact lenses was most likely needed before the treatment and if so would also be needed after treatment.

Glad your doing good with the softs, it could be because your astigmatism is more regular now and after Crosslinking (even in the way you had it) helps with tolerance of contacts.

All the best

[bluesfan]

Thanks Jackuria for sharing your story with us and thanks to Sajeev for shedding some light on the issue!

Jackuria, I am very sorry that things didn't work out well for you with the C3R. I am curious if Dr Dan Reinstein was the one who did the procedure for you? Did the doctor give you any reasons as to why the C3R treatment worked the way it did for you? As Sajeev mentioned, did the doctor genuinely fell that the lack of full depthilization and the status your KC has reached pre-op could have been the culprit? Dd he give any other reasons!

So many questions!! But all the information we can get here can help! thanks aga to all of you for sharing