UK Keratoconus Self-Help and Support Association

Thank goodness we got a second opinion

My son Ben was diagnosed as having KC in April. He was told the only treatment suitable was a corneal transplant. We were encouraged to get a second opinion (in fact we got three).

Last week Ben was tried with a sclerel lens and will have his fitted in August. His eyesight was improved from 'counting fingers' to 6/9 which is sufficient to drive a car.

I have written Ben's story in far more detail in my original topic 'KC advanced so quickly'[b]

I just wanted other KC suffers to be aware that sometimes a second opinion can really pay off

Thanks for the post, and the re-assurance.

Often with KC, the original diagnoser mentions a graft - as this betrays their ignorance of the condition. It is thankfully rare that grafts are required there and then however, as your story demonstrates.

Well done you for persevering!

Would just reinforce this- with new surgical and contact lens technology nowadays, grafts really ARE a last option. Its unfortunate that many ophthalmologists are not fully aware of all the new contact lens options - often as soon as anyone becomes intolerant of RGPs they recommend grafting. Alternatives are:

Piggy backing
Soclear
Sclerals
Hybrids such as Synergeyes and the new ClearKone
Soft lenses

The latter ARE now made for advanced KC and there are many on the market. At the risk of seeming partisan (because I fit them!) I would just like to repeat that they can fit advanced KC. In the last 2 weeks I have seen several patients who were recommended for grafting and told soft lenses were not possible... needless to say they now have good vision and all day wear in softs and certainly do not need a graft.

Contact materials, both soft and rigid, have advanced amazingly in the last few years - yet knowledge is often rooted back in the past.

So always seek another opinion if you are told grafting is the only option. Grafts can be tremendously successful - but they do carry risks and can have a limited lifetime. It really upsets me to see people with clear corneas - i.e. no scarring - grafted for no other reason than they could not be fitted with contact lenses. Until you have explored every option and checked out the major experts in the field, you cannot say a person is "unfittable".

OK.. I'll go and cool off now!

Lynn

Hi Lynn

I just wanted to say thank you for posting the info re contact lenses. I'm piggy backing at the moment but I have been struggling with comfort recently and have spent many a day with lenses in only one eye because the other is red, swollen & watery (not a good luck). Whilst I think my optician is fantastic, I do wonder if he is aware of the full range of options available as no alternatives have been suggested when I've paid him a visit on my bad eye days. I've got an appt with him shortly so I'll go armed with your list of lenses, if that's ok.

Thanks

Lis x

Absolutely go with the list of lenses

To be fair, mastering a wide range of keratoconic lenses with a limited patient base can be time consuming and expensive. Most people tend to stick with what they know and probably until recent years this was a reasonable thing to do.

However, with so many options available - and more popping up all the time - there has to be more give and take when dealing with patients. If its any help at all, as I run the KeraSoft Clinic, I am more than happy to work with any practitioner, UK or abroad, to give advice and information about fitting these lenses.

Lynn

Scord,

I am very happy for you and your son that he does not need a graft! I think that a graft really is a last option as there are so many lenses to try first. I have had a graft on my left eye because I tried many lenses but was unable to get any vision because of the scarring I had. It made sense to me to get one done as I have never had any vision with that eye. The other eye I am certainly not going to graft!! As while I can see very little without lenses, with them I can see 6/6.

Going to a surgeon you will get the opinion that a surgical route is the only way to get a good result, when that really isn't true. The good thing about lenses is that they can be removed and you can try a different lens, while having a graft is irreversible!

Lynn, hehe I have come to my senses now and know that I am waiting for Kerasoft to come through the door!! LOL!!! Hehe, I didn't think it was going to be Softperm, just having a very manic day and posting here so quickly I lost my little brain cell!!! I will let you know how I get on with them and wills see you in clinic soon! LOL, pardon the pun!!!!

Loads of love Claire X x X