Quicktopic posts: Nov 2003

General forum for the UK Keratoconus and self-help group members.

Click on the forum name, General Discussion Forum, above.

Moderators: Anne Klepacz, John Smith, Sweet

KateF

Postby KateF » Thu 27 Nov 2003 6:42 pm

Dear Peter
hello. well done on finding the discussion page, which is like having endless friends who understand!
When you get to an eye consultant ask them how many KC people theyve worked with recently. Lenses, corneal or scleral which are bigger, can correct where glasses aren't enough. Where the front of the cornea thins its too flat to refract properly, and contacts can recreate the curved lens effect of the cornea. We were offered wrong treatment in 2 hospitals before i worked out that we needed something a bit more informed. Can you get to Moorfields? Oxford? Put your town on this page and ask for recommendations in your area.
best wishes
kateF

KateF

Postby KateF » Thu 27 Nov 2003 6:52 pm

to Rosie
what about acupuncture?
Just re-read message number 210 from a while back and it struck me that it might be the answer to your pain management
KateF

Rob Armstrong

Postby Rob Armstrong » Thu 27 Nov 2003 11:58 pm

To Rick

Rosemary is right when she said that filling in all the forms for benefits is tedious and can be down heartening (not to mention the obvious problem of struggling to read the things!) Having to write "A Beginners Guide to Keratoconus & How It Affects My Daily Activities" (not available in shops!) every time they send you more forms is not exactly fun.

The fact that Keratoconus isn't universally known and that everybody is affected to varying degrees (which itself can vary over time) is what makes the process awkward. Unfortunately its not as simple as ticking [Yes] and [No]

But at the end of the day, you have nothing to lose by trying. (It was the local Social Security office who told me that!)

Good luck and don't take no for an answer!

Rob.

KateF

Postby KateF » Fri 28 Nov 2003 4:42 pm

Rosie
that should have said 2160
kate

Andrew Thomas MacLean

Postby Andrew Thomas MacLean » Sun 30 Nov 2003 4:28 am

Hey folks

It was good to see some of you at the Scottish Support Group on Saturday! it would be great if more came to the February meeting.

Thank you Elizabeth for all you did to set this meeting up, and for agreeing to be Chair of the Scottish group.

All the best Stephen, and Sandy, thanks for your helpful advice.

Andrew

June

Postby June » Sun 30 Nov 2003 7:14 am

Just to let you all know, Ken Pullum (who "is scleral lenses" now has his own web site. http://www.kenpullum.co.uk/ It tells all about sclerals and even has pictures!

Janet Manning

Postby Janet Manning » Sun 30 Nov 2003 12:48 pm

For Andrew Hill
Hi Andrew,
In response to your questions, I suggest you take a look at the section on the KC site 'About KC'. There are articles there which tell you about the survival rates of grafts. There is no research with accurate data beyond 5 years. 95% of grafts 'survive' for 5 years, but many last much longer. The 'success' of grafts is very different and from what I have experienced the outcome cannot be determned pre op. In other words the graft may be technically brilliant and heals well etc., but there are no guarantees about the outcome in relation to sight. Some people can see with glasses after a graft and others need contact lenses.

I was promised improved vision and correction with glasses. What I got was two excellent grafts - clear and nicely healed, but even less correction with glasses than I had before. Now I get only 2 lines with one eye and nothing with the other. Initially I was given softperm lenses, as I could no longer tolerate RGP corneals. I was allowed to use these only 6 hours per day because they reduce the oxygen supply to the cornea and the correction did not allow me to drive. I was doing a 60 hour week in term time in a University job and needed to be able to drive. So I had to take early retirement.

After a huge battle with the hospital to get a referral to Moorfields, I was fitted with scleral lenses - very comfortable and 12+ hours a day wearing time. I can also now drive again in daylight because the correction is much better. I have retrained for a new career, but I have to take care with eye strain. Sometimes I have to leave a lens out for a day to rest my eye.

At Moorfields it was suggested that my grafts had been carried out unnecessarily. Had I got there first I could have had scleral lenses and avoided the operating table.

My advice is try scleral lenses BEFORE you go for the graft option. They rest on the sclera or white part of your eye, so there is no chance of the lens damaging the cornea. As long as your cornea is not badly scarred by the RGPs you should be able to see well with Sclerals.

They can seem rather large at first, but are very easy to put in and get out. They are stored dry, so no messing about with masses of cleaning fluids. Comfort and correction are brilliant.

Regrafts are possible after rejection, but the likelihood of further rejection increases. It's much better to stay off the operating table.

If you need more info on where to get sclerals local to you, please email me on janetmanning@lineone.net

Good luck! Janet


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