X linking this week!

[HookingHippy]

Hi all,

My 17 year old son, was recently diagnosed with KC.

What a palaver though!!

He had his regular optitions appointment in Early April, who said he suspected KC and wrote to our GP saying he needed to be seen within the month. Our GP took 3 weeks to refer him to our NHS hospital, who then offered him an appointment at the end of August!!!!! We were also told that under the NHS he would have to wait two years to prove degeneration after diagnoses before they would do x-linking. This seemed absered to me. (which our consultant agreed with and said if left two years he would probably be beyond needing x-linking and be looking at a transplant instead!)

As we have BUPA cover we immediately started looking for a consultant in our area, I rang 4 consultants, after speaking with the one I liked (who said he does cover KC) we booked an appointment and he had mapping done of his eyes. He confirmed that yes it KC BUT then told us he doesn't treat it!!! and refereed us to another consultant where we had to not only go through the whole diagnosis procedure again but had to pay again!!!

Anyway, this Wednesday my son will be having x-linking off done on his left eye. We have been told the first three days post op will be very painful, he will be given painkillers, but I wanted to know from anyone that has had it done, is it really very painful after? and can you give me and him any tips to help cope in the immediate days after?

Thank you

[aquana]

Honestly, the pain depends on the person - I've heard stories about people who only got some discomfort, others were in a lot of pain. Unfortunately I was in the latter group. I recommend sleeping as much as he can. I used some sedatives to be able to stay asleep, I don't know if that's an option for you?

[dalbeath]

I was also in the later group who experienced a lot of pain.

Make sure he has sun glasses handy at all times. I wore them indoors for first few days and was unable to venture out for about 4 days and even the only with glasses on. And I slept a lot too.

But it is worth the pain. 5 years on and my scans show no further progression - good luck !

[rosa10]

Hi

My son is 16 and has just been told crosslinking is what he needs. How did your son get on with it? Would be grateful to hear if you have the time to post.
Thank you
Sally