c3r ops

[Sue Hook]

Hi - Both of my children have KC and had C3r ops about 2 weeks ago. In our area it is not available on the NHS and the consultant has recently started offering this operation privately.

My daughter aged 13 , has quite advanced KC and has had hydrops in one eye which has left scarring. The cornea in this eye was too thin for C3r so it was done on her better eye. 2 weeks on her vision is still very blurry and she is having really bad headaches. Does anyone know how long this goes on for. I guess a lot of it is because her vision is so poor at the moment.

My son age 17 KC was not so advanced. so the op was done on his worse eye. His experience has been better and although his vision is still blurry he is not having the bad headaches, just a bit more light sensitive.

Sue

[Andrew MacLean]

Sue

I am sorry to hear that your children both have keratoconus, and that they are having such a difficult time.

Others who post here have suggested that the recovery time from crosslinking is of the order of six months or so.

Have they said anything about what they hope to do with your daughter's scarred eye?

Tell them that they are not alone! There is a 'teenagers with KC' zone of the forum, and they would be welcome to register and post here or in that zone.

All the best

Andrew

[Sue Hook]

Hello - as her cornea is too thin they have said she will need a transplant at some stage but not yet as she is too young and before the c3r was coping wih difficulty with her other eye.

We are hoping that after the eye settles down she may cope better with her contacts as she has had lots of trouble with these in the past - I guess it will be a case of wait and see.

Laura is registered on this site and does use the forum although she says there aren't many people her age.

[Lynn White]

Sue

Just as a point of interest, there is a lot of work being done in Europe to enable thin corneas to be cross linked. One method is to swell the corena pre-op with distilled water and some recent work has been done with a special soft lens in place to add artificial thickness. As the consultant has only just started offering CXL, he may not be aware of this. It is certainly worth looking into.

Vision will be variable and hazy for another few weeks and then will get clearer but will vary in power for around 6 months as stated above. The headaches can be caused by the varying prescription.

I fit KeraSoft post CXL to help this. One can't get an accurate prescription but often a lens near the power required helps. It may even benefit to fit something like a disposable Silicone Hydrogel lens while the eye is settling. Its my experience that helping the vision as much as one can tends to reduce discomfort from visual variation.

If the vision is very blurred, then your daughter may well have lost some depth perception which will also make her feel a little uncomfortable.

Lynn

[Sue Hook]

Thank you. We have an appointment to go back in 3 months to be assessed for new contacts and to see whether it is possible to have glasses for when she cant wear them. Laura has a kerasoft lens for her good eye at the moment and the consultant has said she could try using it in January while we are waiting for the appointment. From what you have said this might be a good idea.

My son's experience has been a lot better so far.Although we obviously don't know the actual effects from the crosslinking yet It really does show that it is best done as early. We will be waiting for a few months before we decide whether he has the other eye done which is much less affected by KC.

Thank you for your help.

[Sue Hook]

I rang the hospital today as despite all the painkillers, Laura's still got a continuous headache. We Have an appointment to see him tomorrow just to check everything is OK as I think a bit of reassurance would be good for her.

[Andrew MacLean]

Sue

You are right to go back, and to keep going back if you are not satisfied. It is always a good idea to check anything of which you are not sure.

All the best

Andrew

[gilly49]

Hi Sue
Good luck with the hospital with your daughter; it is obviously a very anxious time for you. How old is your son, as my son Josh has just been diagnosed with KC and we have just joined the forum which is helping me a great deal as he is quite reluctant to talk about his condition. Josh is going to his Optician next week to have a contact lens trial to see if it improves his vision in his left eye which is the worst and then we meet with the consultant in Swansea again early January to make a decision whether he wants to have the cross linking as he is very wary. Do you have any views about the op, do you think you and your daughter made the right decision?
Regards
Gill
P.S. Do you know what your daughters reading was in her worst eye, my son's is 404 and I am led to believe that if it falls below 400 it can be quite risky to do the cross linking?

[Sue Hook]

Hi Gill
My son Alex is 17. He got keratoconus later than my daughter and although he has it in both eyes only 1 eye has deteriorated so far so this was the eye they operated on. He has recovered really well. Very painful first night but we were given painkillers and local anaesthetic drops to use - which we did need. He was able to go back to school after a couple of days and thinks his sight is similar to before the op. We didn't do a sight test before which would have been good so we could compare.
He has not joined the forum but I am sure he would and would be pleased to talk to your son if it would help.

Laura is nearly 14 and got Keratoconus when she was 9 or 10. Her right eye is too thin for crosslinking and she has had hydrops so there is scarring. Her left eye was deteriorating very quickly and the cornea was only just thick enough. It was a really difficult decision as her vision in her other eye is so bad and we were having this operation on her better eye but in view of the rapid deterioration there was in effect no choice as if we had not gone for the crosslinking it might have got as bad as the other. We have got to know the consultant as he has also treated my husband for several years and this gives you a sense of trust. He said if it was his daughter he would be doing the operation without delay.

As to whether we made the right decision - it is really early days. I have asked myself this several times over the last couple of weeks. Laura has not been able to go back to school yet and we are having to get the school to organise lots of help which is not agreeing with an independent 14 year old. But I think her headaches are improving. We will have to see how things go. When we went back to the consultant this week he was happy that her eye had healed well and an a quick refractive reading he said was unchanged from before the op. Unfortunately Laura couldn't read any letters in the eye chart but I just hope this will get better. I am also hoping that the crosslinking might result in her being better able to tolerate her contact lens. I am just keeping my fingers crossed.

Laura is registered on the forum and I am sure would also talk to your son - how old is he? When Laura first went for lenses her vision improved so much- I'm sure your son will find this as well.

Good Luck with everything

Sue

[Lynn White]

Gill and Sue

Can I just say that I think that teenagers have the hardest time deciding about CXL. Younger, parents are more confident about taking decisions for their children. Older, and they are able to make decisions more easily as they have more control anyway over most of their life. Teenagers are betwixt and between and are only just beginning to experiment with taking charge of their own lives and facing the consequences of decisions.

What is important to realise is that CXL usually DOES disrupt vision for several months and that to a teenager, the disruption to their normal life is really hard to cope with. As parents, you look to the long term and can see that short term disruption is minor compared to the bigger picture. Teenagers often look at things in an entirely different way. Its the age old conflict of experience battling with emerging awareness and sometimes, a bunch of adults all saying a certain way is best is exactly not what a teenager wants to hear. And the more desperate you are to get a solution the harder they dig their heels in or blame you if it does not all go to plan.

If you need any info or help.. please pm/email me.

Lynn