Inferotemporal Keratoconus

[Adrian Dodman]

Hello

I was diagnosed about a year ago, although I think I have been "seeing" the affects for some time. I am still wearing spectacles but I am undergoing a contact lens trial.

My cones are to the bottom and off to the (outer) side.

I am interested to know how common this type of cone position is and how successful people have been with different types of lenses.

Thanks. Regards,

Ade

[Andrew MacLean]

Dear Ade

Welcome to the forum.

Isn't it a nuisance that cones do not develop in a convenient position? I think mine were low down on my cornea, and tended to the side. fitting lenses on KC eyes s never really easy, hence the need for specialist optometrists. Still I wore lenses for decades before I had my first graft, and during those years the optometrists at Gartnavel Hospital in Glasgow fitted me with a range of different sorts of lens in a variety of materials as my cones developed and the fit became more challenging.

What sort of lens are you trying?

Andrew

[Adrian Dodman]

Hi Andrew

Thanks for your reply.

I have so far tried one pair of lenses. I think they were RGPs (!?). Anyway, they were really small. Due to the location of the cones the lenses sat down and off to the side, so I could not see anything (I was looking through the top of the lenses) and could see the halo of each lens going across my eyes. When I blinked the lenses popped central for a split second and then went back to the cones again.

I have been back to the specialist and he has asked me to go back to my optician and try a "soft toric keratoconic lens". I think he said he would write to the optician but I think I will call her soon as I have not heard anything. On both visits to the specialist he has said that if I am unsuccessful with getting fitted at the optician's then they will try at the hopsital instead.

I have not been asked to pay for the first set of lenses yet. Is it normal to pay for each set of lenses or just once when you get the "right" lens and a "good fit" (until your eyes change again!)?

Thanks again. Regards,

Ade

[jayuk]

Ade

Generally we all pay a subsidised fee per annum per lens..which is around £50 odd quid.....I think Lynn White wrote a good FAQ on charged in teh FAQ section which kinda explains it better.

Dont worry too much at this stage with regards to where the cone is. From what you say, I am assuming that you have mild KC?....In which case you have a large arsenal of lenses to choose from and Id like to think that you will get excellent vision from a few of them!...

What is your vision now?...aided and unaided?

Jay

[Andrew MacLean]

Ade

From the time I moved to Glasgow from Aberdeen I always had my lenses fitted in the hospital clinic. I must say they were absolutely excellent and if your hospital offers a service that is even half as good I'd encourage you to ask for a referral to them.

If you happen to get a good high street optician who is used to fitting KC eyes then I daresay that can be good, too, but at least in the hospital you would know that the optometrist is well used to fitting lenses to odd shaped corneas.

I never paid for lenses that did not fit, and if my fit changed within the year I did not pay for the second or subsequent lenses.

Andrew

[Adrian Dodman]

Thanks Jay and Andrew.

When I speak to the optician I'll ask her if she'd rather I go straight to the hospital. I believe that she does treat other KC patients. The optician and the specialist know each other and are on a group together. The optician seems to be involved in lots of other optic pursuits.

RE: Vision
I wear spectacles at the moment, which also have prisms for convergence insufficiency, so when I do get some lenses I might have to still wear some clear prism specs otherwise I'll still see double!

I think I have mild KC and have good vision, but I find work (looking at a screen most of the day) and driving cause me problems.

Occasionally I can't see the screen for toffee, it's like my eyes have just had enough, but other days I am fine. The nature of the job and the convergence insufficiency probably are not helping there. I find the same when driving e.g. if I have to visit the office - a couple of hours driving in the morning and then again in the afternoon. I think the whole lot is worse when tired.

My left eye is the worst and the ghosting with that eye is always noticeable. The right ghosts but it is loads better.

Can the KC give you more trouble some days than others?

Regards,

Ade

[GarethB]

On the subject of paying for lenses, mine are subsidised and come fomr the hospital.

Patients there only pay for the lenses they go home with and that the hospital feels will last.

Before Christmas, I was trying sveeral different lens type and never paid for any of them because they did not work. In the end we got the old ones to work and that cost me nothing.

[samba_elite]

Ade,i see you're location is St neots,are you seeing Mr Akay/Mr Stephenson at hinchingbrooke?

I'm a patient of theirs,have been for 5-6 years,my cones drag down also and i have the soft lenses,comfort wise they're fantastic and i forget they're in after about 10 minutes,vision wise it's been more of a challenge that still isn't yet properly overcome but the comfort really makes it all a lot better.

If you're not seeing these 2 chaps then i suggest you try to get in with them,Mr Akay is a star when it comes to lenses,he's very helpful and understanding as i'm sure many members on here will testify to.


Incidentally,i pay just over £40 per year per eye and get more or less as many sets of lenses as i need for that one-off payment.

[Adrian Dodman]

Hello!

Yes, I saw Dr Stephenson around December last year and again in May, and he wants me to go and see him again in a year. I tried one set of lenses (quite small ones) which did not work out, and he has said that I should try Soft Toric lenses next. He said that if I can't get a fitting with my optician then I should go to the hosptial instead.

Many thanks for the details. Regards,

Ade

[samba_elite]

You'll be better off asking to see Ali Akay mate than a regular optician.