Keratoconus -devastating news - advice please

DevilsAdvocate1

Sorry to hear about your news.

My son is 16 and also has keratoconus. Last year he had an operation called collagen cross linking to stabilise his sight as it was deteriorating quite quickly. This was about preserving his sight rather than improving it, but many people who have had the procedure have reported an improvement. It might be worth enquiring whether this could be done on your right eye. Don't know if it can be done on the other eye after a corneal graft.

The procedure as done at an eye hospital and is quite a new treatment. The optician my son went to had not heard of it.

wapow

DevilsAdvocate1 wrote: »

Sorry to hear about your news.

My son is 16 and also has keratoconus. Last year he had an operation called collagen cross linking to stabilise his sight as it was deteriorating quite quickly. This was about preserving his sight rather than improving it, but many people who have had the procedure have reported an improvement. It might be worth enquiring whether this could be done on your right eye. Don't know if it can be done on the other eye after a corneal graft.

The procedure as done at an eye hospital and is quite a new treatment. The optician my son went to had not heard of it.

Believe it or not, my friend was about this age when he started to notice his vision go bad.
For some reason It declines rapidly, then stops all of a sudden.
He left it for a few months before he went and got checked out and was told he had this problem.
At the time, there weren't many treatments available. They said it was in advanced stage and gave him hard lenses.
He couldn't use those lenses so he stopped wearing them and just went about life as is because at the time, his lens options were not explained to him properly and he had such a bad experience with hard lenses it stopped him.
He is now 33 and decided to get it sorted.
When they tested his eyes, they said its the same as it was all those years ago.
He does not want any operation just yet so they are now ordering some very expensive lenses and advised he can piggyback (soft lens first then hard lens on top) due to his eyes being sensitive.


Im not sure if 16 was too early to operate but I wouldn't know. The surgery you mention wasn't even mentioned to my friend when he went recently but luckily he has a few friends in the field who suggested that operation and also suggested that when he goes to the opticians to stress that he needs another option other than hard lens.


The opticians weren't even gonna suggest anything otherwise as he said he was waiting for them to mention options but he had to bring it up in end.

Sniggle_2

I think I might get my gp to refer me back to the eye hospital then and see if anything else can be done.

Thank you for all your support xx

GRM

Check out the KC charity support forum too, lots of good info there.

I have KC and piggyback contacts mean that I can drive, I can't see well enough to with just glasses.

DevilsAdvocate1

wapow wrote: »

Believe it or not, my friend was about this age when he started to notice his vision go bad.
For some reason It declines rapidly, then stops all of a sudden.
He left it for a few months before he went and got checked out and was told he had this problem.
At the time, there weren't many treatments available. They said it was in advanced stage and gave him hard lenses.
He couldn't use those lenses so he stopped wearing them and just went about life as is because at the time, his lens options were not explained to him properly and he had such a bad experience with hard lenses it stopped him.
He is now 33 and decided to get it sorted.
When they tested his eyes, they said its the same as it was all those years ago.
He does not want any operation just yet so they are now ordering some very expensive lenses and advised he can piggyback (soft lens first then hard lens on top) due to his eyes being sensitive.


Im not sure if 16 was too early to operate but I wouldn't know. The surgery you mention wasn't even mentioned to my friend when he went recently but luckily he has a few friends in the field who suggested that operation and also suggested that when he goes to the opticians to stress that he needs another option other than hard lens.


The opticians weren't even gonna suggest anything otherwise as he said he was waiting for them to mention options but he had to bring it up in end.

This treatment is pretty new in this country and I believe it was only approved my NICE last year. We were given a leaflet on it and part of it discussed how to get grants to pay for it was it wasn't available on the NHS. The consultant told us that we were really lucky as it had just been approved and he confidently put a line through the area explaining how to apply for the money.

My son had first noticed an issue with his eye when he was 14. He had 6 monthly optician appointments and each time there was a marked reduction in sight. By the time he had the operation he could only read the top 2 lines on the eye chart. The operation has to be done before the cornea gets too thin, or it can cause blindness.

The eye hospital did loads of photographs of his eyes and apparently his other eye is also showing early signs of this condition. The consultant said that in my son's case he thought it was a certainty that he would need a corneal transplant within a couple of years. And as a transplant only lasts 10 years or so, he would be faced with many. Along with the added complication of there being a higher chance of rejection with each transplant.

So I don't think there was really a choice. My son had to have the operation. He had recently said he thinks his eyesight has improved. Will be interesting to see what happens when he has his next check up.