Cross Linking

[jayuk]

Sorry, I think I should have been more clearer

When I say FDA I do mean the follow on chain on treatments...basically if a treatment is cleared by the FDA than generally the EU and UK bodies follow on diligence and pass it as well.....and more so this also has an influence in how Private Medical Insurance authorise and pass treatments.......

Louise : Basically the C3R treatment adds back collagen which are the "links" in the cornea making it stronger....when we get KC these collagen links are no longer present in the volumes which make the cornea strong and stable,

Gareth : Whats the deal with your follow up? What are they saying?

[jayboi2005]

ok Jayuk you have had this, do you reco it to me? My eye sight is not bad at the moment if i decide i dont want to put my RGP's in of a morning i can manage a day and im fine. so if i could halt it now that would be great. has it haulted your KC?

[jayuk]

Jayboi

My KC has not progressed / increased since I have had this done...however I am having a follow up topography on the eye soon so I will be in a better position to gauge the success.

I couldnt recommend it to you I am afraid, or else anyone else here......as its very new and I am not qualified to make such a recommendation. I had it performed on myself due to the reasons outlined in my C3R Experience post.

HOWEVER, IF I had the option to have this treatment 10 years ago, I would have had it done on ONE eye and left the other....but thats just me being extra dilligent

Jay

[jayboi2005]

ok i have decided ill have it, im 99% sure and the meeting with the eye doc will confirm this for me. i looked at that site about where you went in Germany getting there is easy, well i will go with easyjet. if you can tell me how you got there that would be great how from which airport to the clinic? that would help me a lot.

[Andrew MacLean]

All the best jayboi. Keep us posted with your progress.

Andrew

[jayuk]

Jayboi

WHOOOAAAHHHH! Stop mate. Have you spoken with anyone abbout this? Have you contacted Prof Kholhass? I would do a number of things before even thinking of having this treatment done.

I would also speak with your parents regarding this; and then initiate steps to finding out how advanced your KC is, etc

a) get a toptography performed of your eye
b) send them to Dresdenc) speak with your parents
d) think of the impact this will have in the 1-3 months...especially if you are considering having it done on both eyes (Which I would NOT if I was you)
e) Who will come with you ?
f) step back a little and maybe think about the bigger picture...you are young 17!....do you want to risk both your eyes on a treatment that is new?...

J

[GarethB]

Jay,

Health care regulators have a mine field of regulations, in some areas the FDA are bettere than the UK which is better than the EU. Howevre in some criteria the UK and EU are better. To know that a treatment meets the most stringent criteria of which operations may well fall outside of are if it meats FDA, EU and UK requirments.

To be honest there is little differnece overall between them, it is more the minor differneces in which companies need to show complience. Really there is no company or drug that is fully complient. Sounds alarming but as companies meet the regulations of the day and work better, so the regulations get tighter as technology and so on improves, so things are constantly changing for the better.

As far as my sight goes, the amounts of astigmatism and the scar from the graft that needs to be taken into account is prooving too difficult to get enough sight for me to make the legal limit to drive so puting too much stress on the left eye. The elns just will not stay where it should, I blink and the lens will not self centre. Scelrals were discussed but the prescription was considerd too difficult to get on a scleral and I would need glasses on top. Regraft would mean going to close to the cornea margin so rejection is highly likely. As I have already had one graft, partioal graft is out of the question as this would leave the originail corneal tissues and two types of grafted material, again an extremely high risk of rejection. Basically unless I can get the lens to stay in place which is very comfortable when it is there and I have near 6/6 when it is there all avenues have been exhausted.

The best I have got is after a dermatologist suggested that although I do not feel I have dry eyes, my tears could be missing one component just like my skin when it comes to locking in moisture and the natural oils of the skin. I replied that although I do not get 'misting' or stringy goo over my lens after long periods, there is a small amount in the tear duct of my right eye. The dermatologist thinks this may well be what is needed to help provide a layer for the lens to slide on, but the surfactant in the tears needed to spread the goo over my eye is missing. After consulting a collegue he suggested a range of eye drops of which Systane was among them at 2 - 3 hourly intervels, more frequently if the lens was not centering.

This works if I use the drops correctly in that removing the lenses to allow the Systane to get over the cornea in the way it is meant too. My only problem is that laboratory work is not amenable to such a regime and the lab I was working in last week, I was having to remove my lenses hourly. Will discuss this at the hospital on Tuesday and see what effect three weeks of this has had on my eye since my last visit.

I am sure my left eye will get used to being the only working eye, but it means going without anything in the right eye to give the left a chance to aclimatise to single sight. However my days working routinely in a lab are pretty much over, but another department that asked if I would like to work for them means little or no lab work. It is an area I would like to work in so there is a good chance of staying employed an industry I enjoy doing the work I enjoy in a slightly differnet form. So I consider my self luck when comapred to others here.

Will let you know how it goes Tuesday.

Gareth

[jayuk]

Have you discussed the Partial Graft option with the Optham we talked about mid-late last year?..If not, I would send him an email on his thoughts......like I said then, he has done around 5-10 now....on already transplanted cornea with an average 6/9 correction.

The fact that you have had overall success with both of your graft, and none of rejected is in yoor favour...and I think the risk associated with a Partial (minimal) may be worth exploring?

J

[jayboi2005]

well jayuk i don't have parents or guardinas. to its up to me to think this through, and with help from some of you i can do it fine.

you say that you wouldnt have both eyes done, because of risks. i dont see any risks. i see that UV light can damage your eyes but as said so can 2 weeks in australia which i have done before. people say this is good and then it isnt im lost

[jayuk]

Jayboi

I am just making you aware of the potential risks involved. Additonally, I am trying to highlight how I would do this if I was in your position, ie 16/17 years of age, just been diagnosed, found this board few days ago, want to find out the most about the condition, clearly are traumatised with the fact that you have KC, etc

Your last paragraph

you say that you wouldnt have both eyes done, because of risks. i dont see any risks.

I THINK YOU MAY WANT TO BE A LITTLE CAUTIOUS. YOU ARE 17 AND HAVE THE REST OF YOUR LIFE AHEAD OF YOU....DO YOU REALLY WANT TO RISK HAVING A NEW TREATMENT ON BOTH OF YOUR EYES? WHY NOT CONSIDER HAVING TI DONE ON ONE EYE THEN MONITOR THE PROGRESSION......IF YOU FIND THAT AFTER THE TREATMENT THE APPLIED CORNEA HAS STOPPED PROGRESSED AND THE OTHER ONE HAS PROGRESSED THAN YOU CAN RE-EVALUATE.


i see that UV light can damage your eyes but as said so can 2 weeks in australia which i have done before. people say this is good and then it isnt im lost Rolling Eyes

OK, YOU HAVE MADE AN ASSUMPTION HERE THAT ALL CORNEAS ARE THE SAME.
KERATOCNUS CORNEAS AND "NORMAL" CORNEAS ARE VERY DIFFERENT.....THEREFORE WHAT A NORMAL CORNEA CAN ABSORB AND TOLLERATE A KC AFFECTED CORNEA MAY NOT.

To summarise, I am not saying its not good! I am trying to make you understand that you can get carried away with new treatments and the alleged cures that people fire around.

I can see that you are eager, and are exploring a number of avenues and want a result...but tread carefully......as this affects you and you only.......and to be really blunt...noone will give a pile of dog-bung if things go wrong......only those that have gone through it! ..ie people on this board etc, and your closest family.....its the way of the world!....

Hope that clears things up

Jay