Quicktopic posts: Jul 2003

[Dave Hamblett]

Hi all

been a long time since i posted but thought id update u. I have recently finished my degree in engineering and got a 2:1 which i was very happy with, i found out i had KC in my first year and after some messing around with RGP's i seem to be getting somewhere. My eyes changed again at the last appoitment and my left now has poorer vision but it was always weak any way so i can put up with it, amazing how the other eye adapts! I managed to secure employment and they werent bothered by the condition which is good and am allowed time for hospital appoitments. So any one who has recently been diagnosed there is plenty of hope and it wont hold you back in what you want to do Dave



Be creative - with MSN 8 you can use graphics and photos in your emails

[Andrew Thomas MacLean]

Hi Philip

The NHS already does offer corneoplasty as a treatment for KC. Lots of folk who use this site have had his treatment, and I'm waiting now.

I think that most NHS cornea specialists think that it is better to control the condition for as long as possible with contact lenses of various sorts, probably because corneoplasty is not without risk.

Yours aye

Andrew

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>From: QT - Philip - London <qtopic+6-A46Jzt4sJAXLTWnJNHsx@quicktopic.com>
>To: QT topic subscribers <qtopic+subs@quicktopic.com>
>Subject: Keratoconus
>Date: Fri, Jul 25, 2003, 4:53 pm
>

< replied-to message removed by QT >

[Andrew Thomas MacLean]

Good to hear from you Dave. All the best with the new job.

Andrew
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>From: QT - Dave Hamblett <qtopic+6-A46Jzt4sJAXLTWnJNHsx@quicktopic.com>
>To: QT topic subscribers <qtopic+subs@quicktopic.com>
>Subject: Keratoconus
>Date: Sat, Jul 26, 2003, 11:51 am
>

< replied-to message removed by QT >

[Philip - London]

Hi Andrew,

This is surprising as that the NHS offer corneoplasty as no one has ever discussed it with me and I ask about new treatments every visit.

Is this with the use of ISTA Pharmaceuticals Keraform product or using another method? http://www.kcenter.org/past_articles/2.html

What are the side effects of this procedure?

How long have they been offering this treatment? How long have you been waiting? Excuse my enthusiasm but after suffering for nearly 15 years I’m looking towards any potential light at the end of the tunnel.

Others have mentioned Scleral Lens, how do these work with extremely dry eyes? They tried recently fitting me with hydro-soft lens under my corneal lenses but my eyes are too dry and suffered adverse effects almost immediately.

Thanks,

Philip.

[Andrew Thomas MacLean]

Yo Philip

I tried to access the page you mention, but I just got a message saying "the attempt to laod failed". I don't know what this means.

I'm afraid I don't know the answers to your questions, although I shouldn't have thought that corneoplasty was all that revolutionary. Why not ask your consultant next time you go to the hospital? I'll certainly ask mine how long the NHS has offered this treatment, and about the material you mention.
All the best

Andrew
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>From: QT - Philip - London <qtopic+6-A46Jzt4sJAXLTWnJNHsx@quicktopic.com>
>To: QT topic subscribers <qtopic+subs@quicktopic.com>
>Subject: Keratoconus
>Date: Sat, Jul 26, 2003, 5:41 pm
>

< replied-to message removed by QT >

[Gillian]

Hi Philip
Sclerals are worth a try. I don't know how they would work with dry eyes. I suppose it depends on how dry they are. I have found that after a number of hours my sclerals do feel dry - particularly one eye. I have been recommended Celluvisc which you can get from a pharmacy. It is made by Allegan and I put a couple of drops on the lens prior to Ami-dose. For me, at the moment, this does the trick.

[Rob Armstrong]

Hi Andrew,

Just wondering, are people getting mixed up between "keratoplasty" (aka corneal graft), and "corneoplasty" (the treatment mentioned on the linked page)? I know I was confused at first.

You mention you couldn't access the afore mentioned page. Can't help with that sorry, but for those that haven't been able to visit that website, basically it describes a method of moulding your cornea into a more regular shape using a series of chemicals and a special lens which acts as a mould. Apparantly it is not a surgical procedure, in fact the process is adjustable, even reversable! According to the website however, it is mainly intended as a replacement for laser surgery for people with otherwise healthy eyes. Although it does suggest that it could also be used for other eye defects, including Keratoconus.

I too have also heard of this before, and with great excitement asked at the hospital about it-only to be told that my corneas are already too thin and fragile enough to be messed around with like that! But it does appear that progress is being made, so who knows, maybe it will be a viable option in the future. At least for those in the earlier stages of KC.

Hope that helps.

Rob.

[Jan]

I am wondering if any one has been in the same situation as I now find myself I have had breast cancer and after 3 operations, chemo and radiotherapy was put on tamoxifen and now after 18 months of tamoxifen I have got eye problems and have been told its a rare side effect called tamoxifen keratoconus very frustrating anyone else out there with a similar problem?

[aimee.wilkes@bt.com]

Hi all,

I use a PC everyday and i find that it hurts my eyes because it is quite bright, I have tried o adjust the contrast etc on my pc but this also makes the text dark and then i have trouble reading it, how do others cope with this problem ? I have tried a couple of settings on my pc that are supposed to be for the visually impaired but they are totally usless to work with. Can anyone help me because unfortunatley the techy guys here are pretty ignorant and just say well you will have to cope with it as it is !! Not helpful

Any ideas would really really be appreciated

Aimee

< replied-to message removed by QT >

[Ralph Goldsmith]

Deleted by topic administrator 14-08-2003 12:53 AM