New KC diagnosis

[naveed]

Hi Everyone

I have KC in my both eye .....

One eye very bad and one is good .

I have got one done last week CXL and I am planning to do the other one next week , actually booked for op .

I know the problem with both but I have decided to suffer for 3 to 6 months and get it done , because otherwise 6 months on one one eye and 6 month on other eye .... Its a one year game .

So I have decided to take the hit for 6 months and then its over . I HOPE!!!!!

FLUCTUATION IS A BIG ISSUE AFTER CXL AS I FACE .

All the Best

Naveed

[Lynn White]

Rosemary

Andrew said: "There was a time when I used to say that if crosslinking had been available at a time when it would have been of use to me, I'd have jumped at the opportunity. Now I am less sanguine of its benefits." So I was sort of thinking he was agreeing with his ophth - but of course, anyway, Andrew isn't shy of saying what he means so I am sure he will be along soon and sort us out!

Naveed is right, the fluctuation is a real problem. If you have one eye that really is not so good, even if you have the "bad eye" done first and get it reasonably settled, there does come an overlap time when you have the good eye done that maybe neither are particularly good. I am also in the keratoconics yahoo group and there is a lady on there who had CXL and CK done with epi on. Unusually, she had a brilliant immediate result and was ecstatic but then it all went a bit pear shaped a week or so later. It was just co-incidence that her fluctuation effect actually brought her up to normal vision straight away. Needless to say she was devastated as she had thought she had escaped the fluctuation.

So its not a simply option of go get CXL and that's it - you have to plan it to work in with your lifestyle.

Good luck next week Naveed!

Lynn

[Graeme Stevenson]

Thanks for all your comments, as I've already said, the forum has given me a lot of information and this is helped me out so much.

I was referred to the Contact Lens clinic at Gartnavel Hospital, Glasgow and this is where I have had my lens fitted. I've no complaints about the treatment or staff, I am just not happy that it has corrected my vision to a sufficient degree, hence why I am looking into other possibilities.

Rosemary - I think I have only tried one type of lens, I'm not sure but in my naiviety, I know I haven't asked enough questions about other options or lenses. At my last appointment, I made the point that my vision was still poor in my right eye (even with the lens) and should my left eye develop in the same way, then I am going to be in serious trouble. I asked what else they could suggest and was told that whilst they understand my problem, it is impossible to predict how it will develop. I understand this to be correct but I've been left with the impression that in their opinion, the vision in my right eye is 'sufficent' for now.

I've set up an appointment with my GP to get the ball rolling for private treatment as I see this as the best way forward. As everyone has come back to me and said, there are clearly options available for me to explore and this gives me alot of comfort, but until I see an opthamologist (cheers pepe) who can examine my eye, I don't think I'll know exactly what ones are available or best suited for me.

Thanks again for all your comments, they are really helpful.

Anne - thank you kindly for your offer, I have sent you an email in regards to it.

All the best,

Iain

[Andrew MacLean]

Graeme

Welcome to the forum!

Andrew

[Graeme Stevenson]

Iain

Apologies for not actually saying anything in my response!
What I thought I had said was that I can put you in touch with a very good ophthalmologist who carries out the full range of treatments for KC.
Hopefully your Optometrist or Contact lens Optician will look after you well in the meantime.
Graeme

[Iain]

Hi all,

Happy new year and best wishes for 2009.

I have been fairly busy since I last posted.......

Further to the advice and support from everyone, I had a consultation with an Ophthalmologist at a private hospital in Glasgow just before Christmas. It was a really helpful consultation where he sat me down and talked me through all of my questions and concerns.

He made a couple of rather interesting comments based on his experiences:

1) A large percentage of people who undergo surgery for Keratoconus do so before 30 years of age and this is because the disease usually shows itself in the late teens early twenties and thereafter does not deteriate as much after the age of 30.

2) After a few years, a large percentage of his patients tend not to reattend his NHS clinic for check ups as they gain comfort and satisfaction with the level of vision from their contact lenses.

Whilst I am not naive enough to know that this is the same in all cases, I started to feel more hopeful about it all.

His opinion upon examining my rigid lens was that there were small air bubbles in behind the lens and that the lens should most definately be giving me a better level of sight than I was experiencing.

He further went on to advise me that the best course of action was to go back to the Contact Lens clinic at Gartnavel and question the fitting of the lens. He completely endorsed Gartnavel as being the best place for me in terms of specialism and care and whilst I never questioned it, this was very reassuring.

I've since been back to the clinic where they agreed with the Ophthalmologist's findings. I was tested for a smaller contact lens that is specifically designed with Keratoconus in mind.

I am in a far more positive state of mind about it all and am hopeful that with a bit of 'tweaking' here and there, I will get a lens that will be best suited to give me the vision I require for my work. As it stands, I am getting by with my current lens and will hopefully have my new one in a couple of weeks.

I guess my thoughts are that we've tried one lens and its not worked too well and now its time to try a new one, it may be that I might need to try something else - something that I know a few of you have already told me!!!!

Anyway, thanks again for all the correspondence I've had and hopefully I will have good success with the new lens.

All the best,

Iain

[GarethB]

Good news you are feeling more upbeat.

It can be misleading when new to all this and we talk about RGP lenses when in fact under this umbrella there are dozens of lens designs each with subtle variations of that design in the fitting kit and we often include the scleral lens under 'contact lens' which also made from RGP material and then the number of soft lenses for KC are coming out too.

Just very tedeous working through the range to find what is best for you.

I was told only RGP's would work but since working with lens manufacturers I have found the latest soft lens for KC actually works best for me.

Never accept something won't work unless you ahve tried it first.

[Andrew MacLean]

Iain

Thanks for this post; and not just because it confirms my own view that Gartnavel has become the "gold standard" centre for treating and managing Keratoconus.

All the best

Andrew

[ux2]

Go for cross linking it has a very high success rate around 100%. I have Keracatonus in both eyes (left worse) but it is at the early stages. I have been to a private eye hospital and they told me to get one eye treated first (the worse eye first) and it will take up to three months to heal.

At the first consultation they will do an eye scan to see what stages your Keracatonus is at.

It will cost about:
£180 for the first consultation
£80 for the eye scan
Between £2500 – £3000 for the cross linking




UX2