Just been confirmed....

[Louise Berridge]

Hi Brian,

I found out I had KC 2 weeks ago after numerous trips to the Optician and a consultant, who all missed it. After another trip to an eye clinic at a hospital it was found and the following week I booked in to have C3R at the London Refractive Eye Surgery straight away. It was £1250 an eye, which includes a year of follow up appointments. It is expensive but I couldn't put a price on my sight. Luckily I had enough saved up, but I would have taken out a loan if not.
I'm almost sure the NHS will not fund this treatment at present. It was new to this country this year. The LRS have treated about 13 people including me.
Do you think you will have it done?

Louise

[Brian Bauer]

Hello All,

Many thanks for your assistance and the information I received has been very helpful so thanks again.

My travels have taken me to Specsavers in Rayleigh Essex this time for my very first RGP lens fitting which as I am sure you can guess was initially very uncomfortable but I was given about 10 minutes initially to try and get used to them and was then tested on the sight chart and I was pleasently surprised with the clairty of vision in my right eye but was disappointed with the vision in my left which I was informed was more down to the fit of the lens as opposed to the prescription. My only concern was that I appeared to have what I can only describe as "colour ghosting" which is why I can no longer wear glasses whilst driving at night (I still get a little starbursting and ghosting wearing soft contact lenses but it is to a much lesser degree).

So I again have to go back for another fitting once the next lenses have been ordered in from the manufacturer, I guess I am going to be in for this for the long haul and will have to get used to attending numerous appointments, I wish there was some way I could get priority treatment but with most opticians these days being a "business" I doubt they would make much of a profit from me!

What I did find quite amusing was the fact that my contact lens fitter (who seems quite knowledgeble and patient) tried my vision with the soft disposable lenses I am currently using and was baffled a the level of acuity I was able to achieve whilst wearing them albeit I did squint excessively to reduce the ghosting and make things a little sharper!

At this point I am seriously considering offering myself to medical science as my eyes just seem to be something of a genetic abnormality and don't seem to follow the norm when it comes to the diagnosis and treatment of KC.

I wonder if anyone else has had a similar experience if so what treatment or lenses did you end up wearing and how did you get on with them.

I still have my appointment for C3R at the london vision clinic in february 07 I have decided to stay with the clinic as I been with them from day 1 and they have all my background history (and I paid a £500.00 deposit in Sept 06 so they have sort have got me hooked!)

Anyway in the meantime I shall continue my daily struggle with the J&J acuvue oasys soft lenses and continue to squint at everything to achieve a satifactory standard of vision until my next fitting....

Oh and all the best for Christmas and the New Year if I don't hear from you before christmas!

Cheers!

Brian

[GarethB]

I have heard many stories like yours and mine is one of them regarding what we manage to see despite the degree of KC.

To me this shows how adaptable the brain is and its ability to compenstae, especially if the changes are gradual. Two thirds of the yes focusing is done through the cornea and if you think of the lens as a muscle (well the bits attached to it are so the lens can change shaper for fine focusing) as it works harder like any other muscle its strength builds and I suppose like a joint can become more flexible with exercise, I suppose the lens can have a wider working range.

Not many people without KC would ever put there eyes under the same level of stress.

From your experience of Specsavers it would appear you are getting a good level of service. Many people here have slated them for their inability to serve the needs of a KC patient. It just goes to show some of the brand name highstreet optoms can still give good service.

[Andrew MacLean]

I guess the difference comes down to an individual fitter who may have particular skill or a particular interest in KC. If you find someone who suits you, stick with it!

Andrew

[ThePdM]

Hello all. I have been reading a lot about this forum, and have joined recently. I have been diagnosed with KC a few months ago and have been very indicisive about undergoing the CR3 treatment. I got my final diagnosis at the LVC. My site is generally good, but there is always the risk that it can worsen rather quickly, according to Doc Reinstein. I have spent the last 3 months arguing with my insurance company which refuse to pay for the treatement, for more than one reason. So for now, you gotta pay yourself. It is very expensive and I agree that there is no price for your vision, but I am also wondering how long it will be until it becomes a more "common practise". I guess I am writing mainly to get an update from Brian, who had his treatment in Feb 07 at the LVC as well. I am seriously considering undergoing this prosedure and wanted to know if anyone has any updates in terms of doctors/prices/clinics/etc... many thanks to any replies

[Andrew MacLean]

ThePdM

Welcome to the forum.

Don't know about C3R, but I do know that there was talk about it becoming an available treatment on the NHS. Have you checked out the likely possibility of NHS treatment?

Also if you have not already done so, I'd suggest you arrange to see an NHS Ophthalmologist. This need not interfere with your being seen at the LVC, but will put yoiu in the system if there is any need for more routine treatment in the future.

All the best

Andrew

[GarethB]

ThePdM

Welcome to the forum.

Most insurance companies only pay for treatments privatly if they are already offerd on the NHS.

C3R is so new in there opinion they are waiting to see what happens long term because ideally they do not want to have to pay out for a top up.

There are a few NHS Hospitals appliying for ethical clearence to start the procedure.

[ThePdM]

OK cool, that is what i thought. I am always a bit sceptical about the private treatment. never know if they are just trying to get 3000 pounds off you or not. I am having a call with them tomorrow, so they can show me stats and some general info on how many people they've treated, what results were etc. will keep you guys posted just so you all know. Thanks for the quick reply