Quicktopic posts: Mar 2003

[Amanda Stigle]

Dear Ally
In my experience and from talking to others with
KC that have experienced deterioration with their eye sight it does generally seem to go in phases. No problems for years and then problems start. The speed of the deterioration depends on the cause. Often gradually, but complications such as Hydrops is very sudden.
If you are getting sharp pain in your eye, then this does need to get an appointment to see your Optometrist.
It may just be that the lenses are a bad fit. If you have trouble keeping them in make a note of how often they fall out and ask about the possibility of scleral lenses.As it may be that your eye topography (shape) has changed and sclerals may be more comfortable and won't fall
out!
Good luck and if you want to contact me you can at astigle@aol.com

Dear Nessa
Thank you for your postings, your husband and you have had more than your fair share of difficulties, with KC. For the majority of people with KC there is always a good chance of recovering eye sight lost either with changing the type of contact lens worn or by having a corneal graft. At the end of the day it is making the most of what you have. The support of family and friends is a very important contribution.

[Ally]

Thanks Amanda,

Well when I lost my lens I immediately rang my optemetrist, currently awaiting the reply. I have never really got on with my lens and even asked about sclerals as I do think they would be more comfortable for me. My optemitrist is currently training in the fitting of scleral lenses so I don't think I will be able to get them just yet but my hope are that I can try them soon.

I think my problem is where the defect occurs. It seems to appear as though it is at the bottom of the iris and so the lens keeps slipping over that and not staying central and so becoms very uncomfortable. I personnaly think that sclerals would be better for me because of the position of the defect. Anyway I will let you know how I get on and thanks for the advice.

Take care,

ally

[Sue Ingram]

Hi Gaynor (1458), Welcome to the site. With regard to flat screens, I must admit I have just bought a new pc with a flat screen and I find it 100 times better than the normal monitors. So, obviously, as with all things KC, it sounds like it depends on the individual!

Strange that you are finding it harder to read with your new lenses - sounds like you should contact your optician and find out why.

Take care. SUE

[Sue Ingram]

Dear Karen (1461), Yep, there are many of us KCers who experience problems driving at night, partcularly with the lights of the cars coming the other way (and then there is rain, of course, which makes everything alot worse!). As you have done, I think each person probably comes to the decision themselves whether or not they feel confident enough to drive at night.

With regard to the pain you are experiencing with your lens, I am assuming that this is an rgp corneal lens? I also found that I could not wear this type of lens after wearing them all day, every day for over 20 years. The problem was mainly with my left eye; I ended up having so much pain when wearing the lens that I could not wear it at all - so then I could do nothing as my left eye is my 'good' eye. My saviour has been scleral lenses which cover your whole eye and do not touch the cornea. Have these been suggested to you? After struggling for over a year and trying all sorts of corneal lenses to no avail, I was at the point where I thought I would have to go for a corneal transplant, but fortunately the sclerals have kept me off the operating table.

These might be worth looking into. There is further info on sclerals on the KC Group website http://www.keratoconus-group.org.uk or you can always email me direct if you have any questions on sue.ingram@virgin.net. Take care and let us know your progress. SUE

[Sue Ingram]

Hi Sean (1451), Sorry to hear that you have just been diagnosed with KC - it is a shock but to try and allay your fears a little, you will find that the majority of people with KC wear some sort of contact lens to correct their vision and can generally carry on their life as normal, possibly making a few adjustments as necessary.

However, the progression of KC does not seem to be predictable and can be very up and down. You might find that you go for years with no problems at all and then you might have a period where everything seems to be going wrong, however, you will find that you get through these 'blips'. We all go through 'bad eye days' and basically, you just learn to live with it.

For most people, I would not say it is a daily battle once you have found the solution that works for you, however, this can sometimes take time and needs a very tolerant optician who has experience in fitting lenses on KC eyes - so patience is the order of the day!

Obviously, there are a certain amount of people who do experience alot more problems than the rest of us, depending on how far their KC progresses and how tolerant they are to wearing contact lenses. This does mean that they may have to consider a corneal transplant at a later date.

Assuming you will be getting lenses at some point soon, good luck with them and if you need any help or advice, do not hesitate to post another message. That's what we are all here for. You might find it takes some time to get used to wearing lenses but after a while you will hardly know you have them in. Keep smiling :-) SUE

[Andrew Cope]

Hi

I've just been diagnosed with KC, after 10 years of not really knowing what was wrong with my vision (less of that siad the better).

The consultant informs me that I have one eye with KC that is still giving me 100% vision and the other requires a corneal transplant.

Can anyone advise me as to the after effects of such an operation - particularly in relation to driving etc..

Any help most appreciated

Im in the Staffordshire area

[Sue Ingram]

Hi Andrew, Welcome to the site. Sorry to hear that it has taken so long for you to be diagnosed with KC. There are many people who visit the site who have had corneal transplants and I am sure they will be able to help you in this respect. I believe there is also info on the KC Group website at http://www.keratoconus-group.org.uk.

However, before you make the final decision to have a transplant, ensure that you look into all the options that are available to you. For instance, have scleral lenses been offered to you? These cover your whole eye and do look a bit scary when you first see them but are extremely comfortable to wear. It does not necessarily mean that these will work for you but it may be possible that they will keep you off the operating table so they are definitely worth eliminating. It only takes about 10 mins to see if they can help to correct your vision.

You will find with KC that it appears to be very individual to each person and you will have to find the right solution for you; this can take some time but you really need to ensure that you have all the information to hand before making the decision to go ahead with a corneal transplant.

If you have any more questions, please do not hesitate to post another message. Good luck and keep us informed of your progress as it helps the many others who may be in a similar situation to yourself. Keep smiling :-) SUE

[Janet Manning]

Ally,
I used to get my rgp coneals through David Clulow Opticians and they ran an insurance scheme, so that if you lost a lens, you got a replacement very cheaply. It also reduced the price of of annual replacement lenses even with a new prescription. Might be worth asking your optician if they run a similar scheme.

Andrew,
I have had transplants in both eyes. If you would like to talk about it in more detail, please email on janetmanning@ lineone.net
I would strongly support what Sue said about trying sclerals first. I was not given this option and might have avoided operations. Post graft I wear sclerals anyway! Look forward to hearing from you.

Janet

[Tony Stigle]

From AMANDA STIGLE ( Via Tony)
Andrew
Sorry that your eye sight has deteriorated in one eye but, great to know that one eye is in good order!
Before discussing the corneal graft issues have you considered all the contact lens options? Such as sclerals (standard or mini's), PMMA, etc their is information on the website as Sue has mentioned or contact us directly.
If you wish to discuss any of this you can e-mail me at astigle@aol.com

Dear Ally
Thanks for your reply. If you e-mail me I could put you in touch with an optometrist who can help you ASAP.
Amanda astigle@aol.com

[Andrew Cope]

Thamks for the messages.. Ill be emailing you all soon for more info.

I havnt had any advice at all - just a simple "You need the operation" and theres a 5month waiting list.....

Seems like some hospitals are better than others.....