My son needs a corneal graft :-(

[Optimist]

Hi All,
I've been with my son to see a consultant in Birmingham today. He has previously had his right eye cross-linked (a year ago) but it seems it was a little too late. The astigmatism today measured 10.5, he has had virtually no vision in his right eye for a couple of years now (relies totally on his left eye). The plan had been to stablise his eye with cross-linking then for him to have an implantable torric lens.

Today my son has been told that the astigmatism is too high to be corrected with an implantable lens. It could be improved by 50 (cautious view) to 75% at a guess. But the surgeon explained the reasons why there is a fair chance in the future the lens would need to be removed (space inside the eye, potential for loss of epithelial cells etc) plus the potential risks of having it in there including catarract. So it would give an imperfect solution (still need glasses or contacts on outer eye too) and could require further surgery to remove and then he would need a corneal transplant.

Other things discussed, specialist KC lenses (my son struggled to tolerate contac lenses before he got KC....hence him having laser eye surgery 12 years ago to correct his sight which may well have been instrumental in causing or speeding up his KC iin the first place; we'll never know the answer to that one). His lifestyle and job mean he needs to be able to wear them for very long periods so it's not likely that would work for him given his sensitivity to contacs.

The corneal transplant we were told would resolve his problems..... the next step is for him to see a surgeon who specialises in grafts to see if he is a suitable candidate and to understand the ins and outs of the operation.

I wonder if anyone can give me any insight on the success of this procedure - at the moment I am feeling somewhat emotional about it all to be honest. As a mum, you always want to 'fix' things for your kids, even when he's 32 and its simply not possible for me to do so.

Thanks for listening.

[Anne Klepacz]

Hello Optimist and welcome to the forum,
Corneal transplants for keratoconus have a very high success rate of over 90% (much higher than transplants done for other eye problems). But the thing to bear in mind is that 'success' is defined by surgeons as having a clear, stable graft and doesn't include a measure of vision post graft in the success rate. Somewhere around 60% of people post graft will still need correction of some kind, either with glasses or contact lenses. So it's not necessarily a guarantee of good vision without contact lenses - although if your son has good vision in the other eye, there's a greater chance that glasses rather than contact lenses will give him good correction. And tolerance of contact lenses is often better after a transplant (I've had grafts in both eyes and contact lenses are hugely more comfortable now than they were pre-graft).
I don't know how long it is since your son last tried contact lenses. As you were told, the range of specialist contact lenses for KC is now much larger than it used to be. So it would be worth your son discussing the lens options as well before making the final decision on whether to go for a graft. Having said that, there are lots of people here who are very happy with their grafts. There's quite a bit of information we can send you about the various options and outcomes. Just e-mail your postal address to anne@keratoconus-group.org.uk if you'd like me to send you more info.
All the best
Anne

[drink]

cannot stress, how good people like yourself are Anna in helping others!! Its amazing how people can open up to helping someone they never met. Much respect!

[aberlady]

Hello Optomist, I can so empathise with your situation, I too am a mum with a 34 yr old son with keracotonus and assocated eye problems who is a possible transplant patient. I feel so inadequate at supporting him, as an adult he feels it wrong to have to rely on his parents for help. At the moment he is on immunossupression medication and cannot wear his contacts, he is allergic to them! He has had to get yet another prescription for his glasses which do not really help. We feel agrieved at the expense of constant upgrades and because he still is working, although on a low wage, gets no financial help from the NHS. The drs at our hospital will not discuss the operation until, "nearer the time." We leave appointments thinking, "Where is the hope for his future?" He is extremely depressed. This forum is the only place I have found which provides an insight but would love a local group where he could meet and discuss with others who have similar problems. We live in the NE Scotland and I have been unable to find anything.

[Lynn White]

Hi Optimist,

The thing about grafts is that you cannot guarantee, as Anne says, that your son will be able to see without contact lenses post graft. There is a good chance he will be able to see with glasses but it is by no means certain. Also, the average "lifetime" of grafts is around 10-15 years. Some people have grafts that last longer but some have ones that need replacing sooner. It is not a guaranteed lifetime solution.

My totally personal view is that every other avenue should be exhausted before grafting. We obviously do not have all information to hand, but it seems that the main reason for the advice to graft is that implantable lenses will not work, technically speaking. You do not speak of scarring or extreme corneal thinness, which are the two strong reasons for grafting.

As Anne also said, contact lenses have moved on and there are soft lenses for keratoconus that will cope easily with 10.5 D astigmatism and give all day wear. Scleral lenses are also an option for poor tolerance. I presume your struggled to even wear soft lenses before laser surgery, but that may well have been down to various issues like dry eyes and solution intolerance. My advice would be to explore such options again before going down the surgical route, as he may well still end up having to do this post graft anyway.

Lynn

[Optimist]

Hi All,
Thanks for replying. Its all so stressful and hard to know what is the right thing to do. Lynn, I didn't know that corneal transplants had such a 'short shelf life', that is a worry, c? My son is only just past 30

I'd thought the implant lens was a sound option to him but is it worth it do you think if he only gets (up to) 70% vision back given the risks involved? Wish someone would tell us what to do ....

He has a lot of problems with light dazzling him especially with night driving and when he goes to watch a football match (the lights on the pitch). Would any of the possible solutions resolve that do you know?

Lynn, he has no scarring on his cornea - it is just irregular with the cone that happens with keratoconus. His cornea was deemed to be ok for implantable lens thickness wise and they said he has enough room inside his eye for it to go.

Thanks for taking an interest.

[Jaimz]

Optimist - I have just had a corneal transplant and believe it is the best thing to have done as I can see more now than I did originally. Even if it has to be redone in 15-20 years time the benefits will always outway the negatives. As for the laser surgery - I enquired about it and the laser centre said that it could help, my optician on the other hand said that it may make matters worse as it could affect the cornea, making it thin, and so make the cone more pronounced...and so sight goes worse.

Aberlady - I think "nearer the time" should be controlled by your son. If it affects his day to day living then you need to push for something to be done.

And another thing to remember is that as mums you'll always be needed for "support" but not necessarily "help". And when us undeserving sons need "help" we'll come looking for you. (No matter how old we are!!!)

Jaimz (43 )