UK Keratoconus Self-Help and Support Association

Hello, I am new here so please be gentle.

Around a month ago I went to see "another" optician (think I have been through at least half a dozen over the last ten years), and was advised that in their opinion I have final stage KC in my left eye and early stage KC in my right eye. Consequently I was being referred to my GP and so to a consultant for further investigation with the likelyhood of cornea transplants.

As you can imagine I was feeling somewhat shocked at the severity of the situation and somewhat relieved that something could be done about it.

Well having done some nosing around it certainly explains why I have not been able to see with my left eye properly for around ten years, its just annoying that none of the other opticians in that time had worked out what was really going on instead it had been put down to a lazy eye. Anyway thats done with and in the past.

Today I had my appointment with the consultant, I figured paying to go private for the appointment was worth the cash to save my sleepness nights as I have been somewhat worried. Also the NHS wait in this area to see the consultant is currently around 3 months.

The consultant has reccomended that I have a cornea transplant in my left eye as soon as possible (hopefully in the next few months) as my eye is beyond having a contact lens. Also that as part of the post-op care he would do a full cornea map of my right eye so we can see (excuse the pun) how bad that eye is. At the moment the right eye occasionaly has mild fluctuating focusing which is a bit disconcerting.

However the consultant also mentioned that because I do have a lazy left eye and have had squint operations in the past (when I was around five years old), it may be that I will have difficulty using the left eye as I haven't really used it due to it being currently useless and because I will have to use it as my right eye gets worse. As a consequence I may also require further squint operations.

I am not totally sure how I feel about all this at the moment, the appointment was only a couple of hours ago (at time of writing this).

Thanks for listening and I hope you don't mind me effectively gatecrashing this forum, I only found out about this place today and needed to let off some steam where others would hopefully be able to understand the situation from experience, unlike friends and family who can only emphasise from what they see and hear.

Thankyou.

Paul

Why appologise for gate crashing the forum?

We are here to help and support each other.

Did your cinsultant explain why your eye was beyond lenses? Advanced KC can mean corneal RGP lenses are not suitable, but a Sceral lens can help in these cases.

A graft can not be undone and is an absolute last resort. I speak as someone who has had a graft in each eye with great success. However a graft will not mean you have perfect vision afterwards. Afetr about an 18 month healing process, many have perfect vision with the aid of glasses or contact lenses. I consider grafts as a long term management strategy for KC.

There is not much information regarding corneal grafts 10 years post op. Mine are over 16 years old now and holding strong.

It is a bit like information overload when you receive such news. However feel free to post any questions you have and we will all share our experiences.

Regards

Gareth

Re: the gatecrashing, it occured to me that I had arrived and just offloaded all in one hit. I think I was and still am somewhat conscious of that.

It is really nice knowing that there are other people here to help and support each other, thanks. I hope that I can be of some help to others.

The consultant explained that I cannot have contact lenses as the KC has progressed sufficiently that they would not help. To support this my optician tested my eye with lenses at opposite ends of the scale neither of which made the slightest difference and indicated this in his refferal letter. Both have said that I could have had contact lenses for most of the last ten years, however none of the opticians that I had seen had reccomended contacts. Hence my frustration towards them in retrospect.

The consultant also said that I do not have to have a corneal graft, however for my vision to improve in my left eye that is what he reccomended. He has also made it clear that it is a long healing process (in order of a couple of years) and that we would be seeing a lot of each other. Also that I will be likely to need glasses/contacts afterwards. The other concern is the gradual deterioration of my right eye that is in "early stages" and needs a corneal map taken to ascertain its progression of KC and that if I do go for a graft (as I am) that we can get that to a manageable state in the event that my right eye becomes a problem similar to my left eye.

I am really pleased to hear that your grafts are still working for you sixteen years later and to be honest it sounds wonderfull.

But yes I am definately suffering from information overload, there is so much out there good and bad. I think that because to me it is a new condition and that I have been dumped into the deep end that I am feeling somewhat overhelmed. None of the contacts for now and see how it goes which most people seem to get.

Thanks.

PS: If anyone wants a list of places not to get your eyes tested email me away from the forum!

The other thing about opticians is that most highstreet opticians are not capable of dealing with KC. They may have the knowledge, but the cost of equipment they need in relation to the number of people with KC does not make it cost effective.

Were the lenses your optician tried the Rose K type which can cope with very advanced KC. Scleral lenses appear to cope with even more advanced which again many highstreet opticians have no practical experience off.

The NHS hospital I go to had a three month waiting list, but now I am on their books, if I need to see them I only need to wait a couple of weeks. The service I get is as good as any private consultaion I have had in the past.

Hi Paul....

I am AM an optician and feel for you having gone through ten years of no help. It is as frustrating to me as a practitioner as well that you went so long before your keratoconus was picked up.

Although you say contacts were tried - like Gareth I am wondering what type were tried because usually you DO get some sort of difference with contacts.

Of course, the fact your vision does not come up at all may be a function of the lazy eye due to the squint - there are quite a few factors here to look at.

If you have any queries due to your info over load just ask and I will try to help!!

Lynn

Hi Paul

Was you told WHY the eye could not have been fit with a lens?

Were you told how advanced it was?...Alot of consultants will say this!.....

In my opinion, Id get a Corneal Topgraphy, find out at which of the four stages your KC is at, and then make the decision from information you have access to your own personal circumstances, and the current quality of life you have with the advanced KC in that eye............

Hope that helps

Hi Folks,

To answer the above points (possibly not in order as my brain hasnt woken up yet):

Re: opticians: I agree that most hight st opticians would not have the expensive kit to deal with KC, however they should if they had suspicions said to me "we don't have the kit you need to go and see someone else..." rather than try to make a lens that will work for now.

Re: Contacts: I have never been tested for contact lenses, I should have made that clear. The latest optician and the consultant were both of the opinion that the curvature of cornea was now so severe that a contact would not sit in place. The optician used normal glasses lenses noe of which made any difference. Nor indeed do the "pin hole" glasses. My left eye vision is like looking through bathroom glass, I get outline, shape and colour but no clear detail. I can read a book with it around two inches from my eye.

Re: cornea maps: they have not been done yet as the consultant yesterday had a good look at my eye using the slit scan light (?) and could see visually the severity of KC, and so will do a map as part of post-op and measure the right eye at the same time.

The consultant did specifically say that in his opinion I am in the final stages of KC and the only thing he could do to help was a cornea transplant. This of course is my choice at the end of the day.

Anyway thanks for the feedback.

Now all I need to do is try and relax about it and stop worrying.

Paul,

The way you describe what you can see with your left eye is much how I see the world through my right eye. Although I have had a graft, I am one of the extremely rare cases wher KC has come back in the ungrafted part of the eye, so distorting the graft.

With the Rose K style of corneal RGP lens, I get near perfect vision.