Treatment options and questions to ask

[susan51]

This is my first time using this forum. My son who is 29 has had keretocunus for several years. He was unable to tolerate contact lenses and as he was coping (after a fashion) was discharged from the clinic. Things progresively became worse and his optician rreferred him back. He eventually (his referral was lost) saw a consultant. He said my son would need a corneal graft. He asked about other options ie intacs and was told they wouldn't work but no reason given. He had another appointment when he thought he would be able to discuss his concerns and options but when he arrived this was for cells to be taken for matching for the graft. The staff there were not able to answer his questions and suggested he went back to the consultant to put them to him. An appointment was made - the cells were not taken as the appointment was not for another three months plus. This time I am going with my son to see the consultant. Really my question is what do we ask? Apart from intacs what options other than corneal grafts are there? Is there a reluctance to look at other options because of cost or that the National Health servide does not do them? My son's optician recommended he ask to be referred to Moorfields eye hospital. How do we ask for a specific hospital? Can we? Would there be any advantage in this?
Sorry thats a lot of questions but we both feel rather overwhelmed and vulnerable with the lack of information.
Any input would be gratefully received

[GarethB]

Hi Susan

Welcome to the forum.

Regarding hospitals and choice it might be best to go back to your GP and explain the situation. Moorfields is a good hospital but due to their popularity they do have long waiting times. Other corneal clinics that may be closer may offer just as good service. I know where I am in the Midlands that from personal experience I would rate Leicester, Coventry and Birmingham as good if not better than Moorfields for treating KC. To put that into contecxt Moorfileds have treated me well when I used to live in London.

Provided the cornea is not too thin and the shape of the cone Intacs can be used. I the cornea is too thin then there is a risk of hydrops which is often painful and can take months to clear leaving you with little to no vision. Secondly when considering intacs their location to pull the cornea into a more normal shape needs to be considered and the pupil size dilated. This is because they need to make sure the intac is clear of the pupil margin, otherwise your son will see the intacs and if it is like the edge of my lens, in certain light conditions and lighting angles I get a complete white out as light is reflected. Intacs are available on the NHS.

Corneal Collegen Crosslinking with rhiboflavin (also known as C3R, CXL and CCL) is a new treatment but usually for the more moderate cases as the cornea must be a minimum thickness otherwise the UV light used may be harmful to the lens and the retina. Not yet available on the NHS but some hospitals are doing trials and as such might be able to do someone on the NHS. There will be an added wait as the hospital will have to apply for funding to do the process. this was the case for years with Intacs but the information generated by people going through this process meant the hospitals (and the support group were involved) could privide information to NICE who then made Intacs an option on the NHS. Very much a case if you don't ask you don't get.

The aim of any corneal surgery is to provide a surface whereby vision correction with either glasses, contact lenses or a combination of the two is easier and better for the patient. So there is still a chance your son may need contact lenses which you say he has a problem with. Which types has he tried?

There are many types of lenses;

RGP of which the designs are many and varied including the material type.
Hybrids - RGP centre with a soft edge
Piggy backing - soft contact lens with an RGP worn on top
Soft lenses - the ones I know of are the Kerasoft II and Kerasoft III (find find the Kerasoft II more comfortable and performance wise is now at a point is might match my RGP's taking unaidied vision from not seeing the eye chart to better than normal!)
Scleral lenses - don't touch the cornea but the whole of the eye, a larger lens but has been shown to provide very good vision for many of those who use them and has meant either avoiding a graft or giving many more years of useful vision before a graft is needed.

The presence of any corneal scaring is a determing factor as to which treatment option is viable.

You say your son had cells taken to match the tissue. From my experience this is only done where people have had a graft before and they have been one of the small minority that has suffered rejection or if a blood vessel as grown into the cornea. As there is normally no blood supply to the cornea there is no need to tissue typing. I have had two transpalnts (one in each eye) 20 years ago and neither were tissue typed.

Unfortunatly it is only a consultant that can give the best treatment options for your sons case as it is necessary to see what condition the cornea is in.

The questions I would be asking would be those shown in the FAQ section, just use the forums search function for grafts, intacs and so on and the advance function allows you to confine the search to the FAQ section.

In addition:

1) What are the factors that mean intacs are unsuitable?
2) Are there in factors in your sons case that would mean collegen crosslinking is an option?
3) What other lens options are there?
4) Why is the graft being tissue typed?
5) For what reason is the graft necessary?
6) Will the graft be a Deep Anterior Lammela Keratoplasty (DALK or partial graft, I hope my spelling is correct) or Penetrating Keratoplasty (PK where all layers of the cornea rae transplanted)?
7) What are the pos and cons of each type of graft?

Hope this helps get things going.

[susan51]

Many thanks for your reply. I believe tissue type is being done as my son has allery problems, eczma and asthma. He has eczma around his eyes and is always rubbing them which is an added concern.
Regards
Sue The lenses he used werer rigid lenses. They kept popping out and eventually lost beyond recall!

[Anne Klepacz]

Hi Sue and welcome to the forum.
The only thing I wanted to add to Gareth's very full reply is that the DVD of our 2005 conference had a very good talk from one of the Moorfields consultants on corneal transplants (and the 2007 DVD has information about Intacs and crosslinking). So if you're not on our mailing list, but would like these, do PM or e-mail me (anne@keratoconus-group.org.uk) with your postal address and I'll send them to you.
All the best
Anne

[tneedham]

Hi

I had the same problem with my RGP hard lenses, i lost so many and they took ages to re-order.
I got transfered on to sclerals, i have never lost one and they are 99.9% impossible to pop out.
I am about to have a Penetrating Keratoplasty on my left eye, simply because i got hydrops. if this hadnt happened i would still be very happy with the sclerals.

I got advised to try every possible option of lenses before considering such an invasive procedure as a transplant, i would second that advice.

All the Best

Tom

[GarethB]

The presntation given at the 2005 confrence was so detailed that one of our committee had a bit of a turn

Oh, and I am not refering to the bit where I was presenting

[rosemary johnson]

Hi Susan and welcome.
It does sound as if the consultant in question isn't being the most patient-centred in the world.....
I'll support what gareth said.
Remember if you get stuck for flowing eloquence, there is a lot to be said for the two simple questions:
- why?
- why not?
In your case, "Why are you recommending a graft?" and "why not intacs?"
You should certainly be given a chance to ask lots of questions. DON'T sign a consent form if you haven't, and haven't had answers to your satisfaction.
As regards getting referred to Moorfields, or anywhere else for that matter, you need to see your GP and ask him/her to refer you. As I understand it, they can refer anywhere these days, at least the can if they are willing to.
As someone has already said, there can be a long time for appointments and long waits in the waiting rooms.
I also thorougly second the recommendation to try other lens options. Possibly the special soft lenses or combinations soft/hard - but if the problem is popping out because the cone is just so steep, then sclerals will fix that. And Moorfields is one place where there are sclerals specialists.
Good luck, and do keep us posted with how you get on.
Rosemary
PS: Tom, why are you being steered into a graft just because of a hydrops?? - did it not clear up without a huge lot of scarring, or something? - and how long has it had to settle down?
SOme people seem tohave the idea Hydrops = must have graft, and indeed the spectre of a graft was raised at the time of my first 2 (of 4) hydrops. They all cleared up after a while, though, and it actually took another 28 years to get to graft stage in one eye - and the (as yet) ungrafted eye is the one that had 3 hydrops.
Apologies for asking if the reason is that several months on, the hydrops healing has left huge scarring. That can happen too.....

[Andrew MacLean]

susan51

Welcome to the forum.

I went armed with a load of questions to my consultation where they advised me to have a graft. Among them were "what are the clinical indicators for a graft?", "what are the other treatment options?" etc.

The answer to the first was that my corneas were now so scarred and the scarring was so central to my field of vision that there was no way that other options would give me clear vision. The surgeon did explain that other treatment options were becoming available (he particularly mentioned ferarrah rings and INYACS), but he went on to explain that given the condition of my corneas these treatments would not be suitable.

then he said, go out into the waiting room and think about other questions you might want to ask. I did so and noted down some questions about lenses etc.

After my second visit to the consulting room, he let me return to the waiting room to think of more questions. This time they were about the hazards involved in surgery; both to my general health and to my eye. Only when he had answered all my questions and answered some questions of which I had not thought, did he ask if I wanted to go ahead with the graft.

Andrew