Cross Linking - What are the outcomes?

[Carleen]

I'm considering crosslinking treatment for my disabled daughter since she has no other treatment options available to her due to the severity of her disability. I wonder if there is anyone out there who has had it done? I really need to know what it feels like immediately post op, how long it was painful for and what was the quality of vision like after it was done. Has anyone suffered complications? Any insights would be really appreciated.

Thanks.
Carleen (Jennifer's mum)

[lars]

Hi Carleen, I have performed cxl (with some limited topo-prk enhancement). Actual pain varies from person to person but is only noticeable during the first 2-3 days and then gradually goes away. Personally, my eyes were very sensitive to smoke and I had a lot of tears during the first 2 weeks because of this sensitivity. There is also going to be a slight light-sensitivity for 1-2 weeks which also varies and gradually goes away. My post-op quality of vision is better due to the prk but generally there should not be any significant difference, probably some small improvement (after 1-6 months and more).
There have been reported some rare complications, and according to the latest report of T. Seiler (who is the "father" of cxl), there were 3% people losing 2 or more Snellen lines and 7.6% with continuous progression. However, the milder the KC and the youngest the person, the results seem to be better.
The article (or its abstract if you are not subscribed to this journal) can be found at:
http://www.sciencedirect.com/science?_ob=ArticleURL&_udi=B6VSF-4WTSXDB-B&_user=7186627&_coverDate=08%2F31%2F2009&_rdoc=1&_fmt=high&_orig=search&_sort=d&_docanchor=&view=c&_searchStrId=1195655090&_rerunOrigin=google&_acct=C000010399&_version=1&_urlVersion=0&_userid=7186627&md5=a18c8c36cf9d0a50ee6844fc52e4efa0

[Carleen]

HI Lars, Thanks for your insights. I guess the best we are hoping for with my daughter is to stabilize her right eye. They may not be able to treat her left eye since it has suffered from hydrops. I'll take a look at the article you recommend. We have managed to get Jennifer to wear dark glasses so that is good. She still takes them off but I think she feels better when she is outside. The next challenge is to get her to wear a hat! She used to love going outside but now she prefers to be inside with the curtains drawn. Our sun in New Zealand is very intense so getting her to enjoy being outside again is going to be a challenge.
Carleen

[Andrew MacLean]

Carlle

Just be aware that if your daughter's cornea has reduced to less than 400 microns, they will probably not offer CXL. Below that thickness the general view is that CXL potentially does more harm than good.

Andrew

[Carleen]

Hi Andrew, Yes, I am aware about the cornea thickness. I'm not sure if she will even be able to be treated as she will probably need to be sedated or given a GA just to get any measurements done. As I have said earlier, my biggest fear is that she suffers from hydrops in her right eye, effectively making her blind. She's probably legally blind anyway as her left eye is still very cloudy from hydrops even though the herniation isn't so visible any more and her right eye very conical.
The whole situation feels so hopeless. There's a whole range of treatments out there that are available - only not for her! I spend hours on the internet every night trying to find any positive stories that are relevant to my situation but nothing is there. All the stories I have read about special needs people all seem to be quite high operating individuals so are able to be helped. Being the parent of a severely disabled child has changed our lives in a huge way, but I used to get some relief by knowing that she was being well taken care of but now I don't feel the same way. I'm relying on people who don't love my daughter as much as me to make sure she is safe, well cared for and her health monitored. I know they do the best they can BUT with every change of staff there is the risk that something is missed - just because they are so busy. She has nearly died on several occasions by choking because a new staff member felt sorry that Jen is missing out because she needs her food well chopped (she has swallowing difficulties). They'll give her a whole apple or banana which she can sometimes cope with BUT sometimes she can't. I feel that Jennifer now needs one on one care so that is my next challenge. Our government isn't too forth coming with money for our special people so it's difficult.
Sorry for the ramble but this issue with her eyes has really upset me and then brings out all the things I have feared regarding her welfare.

Better go and eat chocolate!! No - already did that tonight - maybe a wine!!

[Carleen]

Boy, was I gloomy or what yesterday I have Jennifer tonight and it's great to see her. Her eye is looking better and I think a little less cloudy. She was very "squinty" tonight even with her drops but she could have just been tired. I've tucked her into bed so hopefully she'll feel a bit better tomorrow. She was very happy watching "The Sound of Music" tonight (her favourite movie at the moment). She was looking at the DVD cover very intently (about 3 inches from her right eye and with her left eye closed) and giggling lots. I don't know what took her fancy but it was lovely to see her so happy! One of her caregivers said today that it was wonderful to start to see the old Jennifer coming back. It's been 2 1/2 years since she's been happy and Wendy said thay had all missed her! So had I...