Quicktopic posts: Dec 2003

[Sue Ingram]

Good Luck Andrew - hope it all goes well. We will be thinking of you.

Keep us informed of your progress once you can. :-) SUE

[KateF]

to Andrew
best wishes for your adventure...
just think , 'being away from my desk' , that has to be a plus!!! Kate

[KateF]

Hi Jay
Dale had first hydrops - unexpected therefore scary- age 15. First hospital bandaged = wet soggy smelly mess! Second gave antibiotic chlormycetin; saline; steroid Prednisoline to promote rapid healing; Gel viscotears to aid blinking; dilator Mydrilate to relax the eye reducing pressure and therefore helping pain control and healing.
Lasted 4 weeks, getting clear gradually after 3. Left a fine line scar, wiggly, 7mm, makes vision less exact but not less possible.
Second hydrops age 17 ( i think these things happen earlier in Downs syndrome, which dale has) again very rapid. Not painful but uncomfortable. Dr agreed that antibiotic not needed but gave the rest. The steroid was Predsol this time. The saline was obviously stinging, causing tearful red eyes, an d washing out tne other meds, so i took advice from ken. Wondered: if saline draws water out by osmosis, if the eye gets salt WITHIN the tissues, it will then draw water IN ?.. Also, not sensible to draw water out the front membrane of the cornea while the back membrane nearest the fluid within the eye is still spilt- all in all discontinued the saline...and left off the rest as soon as i felt safe, went on my instincts really. cleared around 5-6 weeks, from bottom across to top,
again a fine scar which isnt enormous problem.
fab new sclerals fitted 3 months afterwards and no stopping us now, back in the land of the seeing!!
if it happens again we wont be scared a bit!
Dale-the-hero and Mum

[KateF]

to Sajeev
thanks for the link, the info at Lombardieyeclinic was really excellent for info about how the eye works and whats hppening to the cornea, also about how far research has come etc. would recommend it to those who enjoy biology! It answered some questions for me.
I have no thought of surgery for my son so am saved worrying about the right decision, Sclerals are fine. But I did appreciate a new source of detailed info, was wary of what was obviously a sales pitch. How did that Dr find so many KC patIENTS?! Now im wondering what incidence is here in UK and elsewhere?
Kate n Dale
thanx
kate and Dale

[Tony Stigle]

Update
Mandy Stigle had a graft to her left eye on Monday. All is well ..

[Brian Taylor]

Jay

I ordered mine thru the CO-OP Chemist chain, they had to ring their suppliers and have it made up. I also go to the Manchester eye hospital and know feel sure you could order it from them.
Brian

[Brian Taylor]

Rosie

I assume you are the same Rosie who is on the American Link.
If I can help I will, you can phone me on my work no 01925763851



Brian

[Rosie Turner]

Dear Brian,
Thank you so much for talking things through today, for being so helpful and understanding and positive too. You've obviously been through a lot over the years with your eyes and built up a wealth of experience and knowledge. Its wonderful that you are willing to spend time sharing this with, and thereby giving support to, other people. It is much appreciated. Thank you.
with very best wishes,
Rosie
< replied-to message removed by QT >

[sajeev]

To Kate thanks for replying,(I'm glad someone did !) if you need more info on anything got to do with KC I recommend going to the follwing web-site http://www.kcenter.org The message board is perticularly interesting. I think you may be right about the sales pitch you mentioned about the mini ark.
But I think the best form of treatment for KC-ers is INTACS (have you heard of them ?)I think all of us must push for them to be available in this country. Although it does not help everyone, it can be tried and if it does not work it can be reversed without any complications. Look up INTACS and let us know what you think.
Thanks
Sajeev N.
p.s the man who invented it is located in paris,france so it is not a long way to go to discuss or meet him !

[John Smith]

Re: Lombardie eye clinic

There has been some mention recently about this site and their views on the treatment of KC.

I've posted some comments on that site by Ken Pullum. The postings are on our own site, and some people may not realise this.

Visit http://www.keratoconus-group.org.uk/

John