Cross Linking - Just another experience

[GarethB]

There are two ways of gettig CKL on the NHS.

1) after CXL has received approval from NICE - the consultation is more around further studies and setting criteria rather than like the Intacs consultation which was around should the treatment be available on the NHS.

2) consultant recomending CXL and applying for funding through their Primary Care Trust which is how Intacs were done on the NHS prior to the NICE consultation on Intacs.

You's be surprised at the number of consultant opthalmologists and optometrists within the NHS who are completly unware of the CXL treatment and new contact lenses available to us. Hinderd by the fact the NICE consultation on CXL has an outdated criteia for diagnosing KC, one of the factors you must have according to NICE to be diagnosed with KC is corneal scaring!

Oh waite a minute, corneal scaring means you are unable to have CXL.

The whole diagnosis and treatmet of KC needs overhauling and made cosnistant across the UK.

[rsnr]

Shocked and horrified.

Just as I explained in my initial post in the topic, a month after my Crosslinking procedure, my doctor in the best private eye-clinic in Bulgaria, told me that things look excellent, my cornea is healing well and I have even regained some of my vision which was quite poor (right eye). Then I came back in the UK to finish my Master's degree and decided not to cancel an appointment with the eye-clinic with NHS, that I had from a few months ago. So I went on my appointment and the doctor told me that my right eye doesn't look any better compared to before the procedure and my vision quality has actually deteriorated (my vision wasn't measured there, he just concluded that from the mean power indication in the topography results I brought him). Furthermore, without any drama in his voice or anything like that he says" You will probably need a transplant within the next five years". Suddenly, after feeling so happy about my procedure this guy blows my mind again. I mean wasn't crosslinking supposed to stop the progression? Did it not go well?
Another thing I need to add is that the doctor was very pessimistic about the CCL procedure as a whole, putting all of the potential benefits in air quotes as he mentioned them. So now I don't know whom to believe and I feel terrible again. After all my left eye is still doing quite well (20/20) but I start becoming paranoid that it will deteriorate as well and then I couldn't cope. Should I trust the doctor who actually performed the procedure? Maybe she only justified the expensive procedure with some "good results". Should I do it in my left eye as well, to keep it in the good condition that it is know? I'm really confused. The doctor here in the UK said that it's not a good idea as the procedure is very new and long-term problems may appear as he said, because of the killing of the cells during the procedure.

Anyways, just wanted to share my experience and the fact that it's really difficult to understand what doctors mean.

Regards

Martin

[Lizb]

How have both doctors measured the success (or not in the case of the NHS doc)? Has the doctor who performed the operation done a eyesight check before and after to say that the vision had improved? You said the NHS doc hadnt done an eyesight check, so it would be interesting to see why he thought your vision had decreased?

I am not an expert but these are just questions that jump out at me from your post. Can you email some questions to the specialist in Bulgaria for clarification?

[rsnr]

Well, the doctor in Bulgaria did do the checks after the procedure and said that my vision is around 70%, while it has been around 30% in my last exam with her, which was a few months before the procedure. I was really shocked to hear that, given that CCL usually does not improve vision but halts keratoconus (that's why i thought that she might be exaggerating a bit in order to justify the procedure but I really do not know.) I myself cannot see any improvement in my right eye, it's still the good left eye that does the job. The doctor in the NHS on the other hand did not do vision checks. He compared an indication called Mean Power on my Orbscan results, which read 44.2 prior and 45.4 after the procedure, and said that it is not possible for vision to have improved. It was probably his negativism towards CCL and the lack of experience that made him say all these things (I remember seeing him for the first time in February 2008, and he said that he's had the equipment for CCL for a year now and would "love to give it a go"). It was the world transplant that took me a few days to assimilate as it was never mentioned before.

The doctor in Bulgaria is very experienced with the procedure as it's only private clinics that offer it at this point, and the one I had it in is the best. She said that she's doing two to three CCL procedures every three months, which makes me want to trust her

I also saw that the thickness of my cornea, in the thinnest place, is 398 after the procedure and it was 460 prior, but I guess this is normal.

Martin

[Lizb]

I would guess that the thinning is normal as they take a layer off to do the procedure.

I am sure that there is someone on here that could explain the Orbscan results to you better.

The problem i have found (like you i have one eye that does all the work, and one eye that doesnt do any work) when i have got contact lenses it takes a while to get my bad eye working, so if the good eye is still stronger then that needs to be taken out of commission (so to speak) to get the other one working again and for you to see an improvement (how about wearing an eye patch over the good eye to try the bad eye working when at home watching tv or something?).

How long is it since you had a eye check up at a local opticians? Would that help clarifiy if the eyesight has improved, stayed the same or gotten worse? It would depend on how long ago you last had a prescription for the bad eye but it may help prove or unprove (in your mind) if the CCL has helped.

[GarethB]

The mean power has only changed slightly, less than 3% increase but that might just be down to the equipment they used being different or if it were the same make and model the inherent inaccuarcy between instryuments.

The key thing is the thicknes has increased by just over 15% which is beyond any experiamental error so there has been a change but it is a question of how much epithelium was removed and how long does it take for that to recover fully.

Neither of these are a measure of how well you can see because CXL is only to thicken the cornea rather than remove the irregualr astigmatism. A side effect is that in some cases it does. Plus we know that in some people vision can fluctuate for better and worse several times post CXl until everything has settled.

It is for this reason NICE have embarked on their consultation process whch hopefully we will know the results of in the autumn.

Until CXL has been around for several decades and we have long term data we will not know if CXL halts the condition or not as in the studies so far selection has been very controlled. Only now it is avaialble to a wider audience will we start to see what the side effects if any there are of artificaiily hardening the cornea. Some reports suggest the cornea is hardened by acouple hundred years!

To me the best determining factor if CXL has worked is that corrected vision is no worse than before and that the patient goes into remission. We can't say cure because for KC to be cured your KC would have to regress and the topography would sow that of a normal person and you would not require vision correction due to any corneal abnormalities.

We will always have sceptics, soft contact lenses is a prime example, my hospital insisted they would not work but you can't argue when the patient clearly shows 6/5 vision when wearing them and the other perameters they looked at matched or better the RGP results.

I know people with KC that is medically less sever than mine but without vision correction are unable to function in any way. whereas for me, no vision correction just means I am unable to drive, I can do everything eles with monor changes.

[djain3]

Hi rsnr,

It was a very good detailed posting...really appreciated...thanks