It's official, my KC has stabilised!

[Rich Moore]

Thanks Gareth.

After having my last pair of RGP contacts taken away after 2 years of unsuccessful fittings, I'm certainly going to ask them about Kerasoft during my next visit to St James's in Leeds.

Whilst I've got used to wearing glasses, I really miss the freedom and refined vision contacts can offer.

[John W]

Hi

Great news about your KC, I wish mine was the same

I was diagnosed at 17...now 22 and My last 2 visits have tielded no change (I see opto about every 4 months). Recently i have either got my lenses mixed up or there has been a sudden change as my vision just isnt as good at the moment.

I wear Kerasoft lenses prescribed at Windsor and they do really help during the day. At night though I still get some glare and halos round headlights. I have learnt to cope with it and have to say i really dont mind being overtaken going that little bit slower on those darkened country roads that headlights dazzle you at a mile away!

[GarethB]

Thanks John,

Hope your KC stabilises too, I was diagnosed at 17 and 20 years on, 2 grafts and KC returning to one eye it has finally stabilised so I hope you and anyone else does not go through what I had to get where I am now.

[John W]

Blimey garteh 2 grafts and then it returning in one eye!

I am petrified of the condition worseining, my mum has it and she is now 53, but strangely with her, glasses are the best option, hers has never got to a case of needing a graft and she can still drive no probs (she would be mad if she knew i had posted she was 53)

My biggest concern is the driving side of it. I know that kerasoft is like the first level of treatment and that hard - piggyback or scleral lenses will probably give me better treatment than kerasoft....but my opto (Barry Holland) believes if your legal for driving with a comfortable pair of lenses....whats the point going one line down for a tad more pain with an RGP.

what age did you have your grafts gareth and i guess more pertinantly....has it improved your quality of life. Did it mean you could drive again after not being able to and was it your choice?

One procedure i have read a lot about is ferrera rings (and there is another type as well). also...one question i cannot for the life of me find out is....

Is a graft done under a general or local anaesthetic. Most sites say under sedation....but that can mean both>?

[GarethB]

John,

Perhaps you should change your mums age to 35

Regarding the driving standard if you get to the legal limit and it is always there then I agree with your optom. If you can get more without extra pain then go for the best you can get.

Grafts were doen at 17 and 18 and yes they gave me my life back. Once I had 6/6 corrected vision in one eye, I was handed back my Motor Sport Association competition licence to go rallying again. after 2 - 3 years post op I had no need for glasses and was like that for a good many years. Only in 2004 when I was racing again as my daughter was a bit older to travel with us did I find I had a problem when I could not see the signs and warning flags when I was racing at night at the Nurburgring (Europes most dangerous track) in a 33 year old car! Once I got back KC was confirmed.

Everything has been my choice and now it is even more informed than before. My optom says if my KC gets worse than RGP corneals or Sclerals is out, operation or leave the vision as unusable in that eye.

Kerasoft is something I am going to try, but the refernce charts optoms use in conjunction with corneal topography and other stuff suggests the RGP's I have should not work but they do. The aim of the Kerasoft is to see if they have a use in some of the more advanced cases which I know has been found to be the case in the US. For this to be a benifit to me is that I MUST have 6/6 which means I will be able to race again instead of compete in concours and polish the car all day long (see seperate thread. You can not race with RGP lenses, but if you get 6/6 with a soft lens or glasses then all is OK and afterall my car was built to be raced!

My main lenses will still be RGP's just because of the grafts and soft lenses have lower oxygen transfer so we want to keep the risk of blood vessels creeping towards the cornea to a minimum and so rejection to as lower risk as possible.

The only thing at the moment I can not do with or without lenses that I did before is compete in motorsport.

Ferrarings have been dicussed before and the other is intacs, just use the search function and see what you get.

As for the anasthetic both can be used; most cases I know of you are knocked out completely but there have been instances referred to on this site wher people have had a local! So under sedation is correct and it does mean both as they are equally applicable

[John Smith]

John,

In the UK, a general anaesthetic is common, locals are quite unusal.

In the USA (where most web sites are!), general is almost unheard of. It's their litigious culture! Over here, the doctors prefer the well-being of their patients!

[John W]

Thanks graham and John. I really didnt fancy the idea of having a local while they play around with your eyes!!! I hope that it doesnt come to that for me...but unfortunately with KC it really is each to their own. I would love to know whether on the grand scheme of things, mine at 22 is considered mild, moderate advanced or even severe, I just get quite nervous about it sometimes....as i guess all younger people do

Also, I only ever see a contact lens fitter at windsor. I dont think, unless my lens fitter looks, the KC in my eyes is even monitored. Is it normal to just see one specialist who fits lenese every 4 months. The last time I had my corneal topography mapped at the hospital was well over 4 years ago

[Sweet]

Hey there!

I take it that you are being seen by My Holland at Windsor and then get seen by the contact lens fitter? Technically you should see a consultant every year if available so that they can check up on things and make sure it is ok.

When i was a patient of his i would get seen every year and he will let you know if things have got worse and you may need surgery etc. If your vision is ok with lenses i would keep with that but maybe chase for a consultants appointment to check in.

Take care Sweet X x x

[John W]

Hi sweet.

I see Mr Holland every 4 months at windsor. seems really weird calling him that because we are on first name terms.....is that good or bad. I have heard Barry is excellent privately anyhow and I am not worried, every time I ask about possibilites of surgery he always rants and says

'your not even on the second stage of contact lenses yet'

I guess hes got a point and a good one, I just thought it was strange that these kerasofts seemed to have kept me going for 4 years and if anyone else should be looking at my eyes!

[Sweet]

Hehe yes i know his name is Barry lol! It is not bad to be on a first name basis, i am with everyone i see. If you are on kerasofts then you are a long way off needing a graft! Most people can't see anything with these so i would take it one day at a time and don't worry!

I don't think that you need to see anyone else but it is entirely your choice. I trust Barry a lot and think he is very good at what he does! Take care.

Sweet X x X