Hello and Help!

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djs1972
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Posts: 23
Joined: Wed 05 Oct 2011 6:08 pm
Keratoconus: Yes, I have KC
Vision: Contact lenses

Hello and Help!

Postby djs1972 » Wed 05 Oct 2011 6:22 pm

Firstly what a great site this is, the power of google is marvellous.............

Let me introduce myself, i am Darren and have had Keratoconus now for 14 years, and have hit something of a crossroads in my treatment, i currently go to my local NHS Eye department every month for checkups and Lens fitting.

Now i have hit something of a crossroads in my treatment, the optometrists are struggling to get a comfortable fit in my right eye, i have had sets of all forms of lens types, form soft, hybrid, and now the rigid large diameter ones, currently i am piggy backing soft/rgp in the left but the right eye has no contact lens because of the trouble i have been having, so my vision is poor in general, and almost non existent in my right eye.

After 2 months of waiting. i finally have an appointment with the consultant to discuss what we can try next, but i really dont hold out much hope to be fair, as i think he will just send me straight back to the contact lens clinic, who have already said there is not much they can do (i have saked for this in writing too), i really dont know what to do next, does anyone know what is available on the NHS or do i have to go private and see the same person.........

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Anne Klepacz
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Posts: 1996
Joined: Sat 20 Mar 2004 5:46 pm
Keratoconus: Yes, I have KC
Vision: Graft(s) and contact lenses

Re: Hello and Help!

Postby Anne Klepacz » Wed 05 Oct 2011 7:17 pm

Hello djs and welcome!
From what you say, it sounds as though the only contact lens you haven't tried is the scleral lens, which covers the whole of the eye. The design of scleral lenses means they don't actually touch the cornea, so they can be the answer for cones that are otherwise difficult to fit. Not all hospitals in the UK fit sclerals, but they're certainly something to ask about. And if they're not available at your hospital, you could maybe be referred to another hospital that does fit them.
As for other NHS options, some hospitals offer Intacs (corneal ring implants which are designed to flatten the cornea) though they aren't suitable for everyone.
If neither of those options is possible for you, then you may be at the stage where a corneal transplant is needed. There are lots of us on this forum who have had transplants which have worked well. But that's a last resort, so do ask about other options first. If you'd like a copy of our recently updated information booklet on KC and a copy of our 2009 conference DVD which covered all the options for KC in more detail, do e-mail your postal address to anne@keratoconus-group.org.uk and I'll put them in the post to you.
Anne

djs1972
Contributor
Contributor
Posts: 23
Joined: Wed 05 Oct 2011 6:08 pm
Keratoconus: Yes, I have KC
Vision: Contact lenses

Re: Hello and Help!

Postby djs1972 » Wed 05 Oct 2011 7:32 pm

Anne,

thanks so much for the reply, i had to look up that lens type, and i have tried them, that was the last one fitted a few months back that really irritataed my eye.
I have asked before about a graft, but my hospital refuses to do it as i am not old enough! (i am 39) and its something that scares me to be honest.

I will send you my address over, as any help and information will be greatly appreciated.

djs1972
Contributor
Contributor
Posts: 23
Joined: Wed 05 Oct 2011 6:08 pm
Keratoconus: Yes, I have KC
Vision: Contact lenses

Re: Hello and Help!

Postby djs1972 » Mon 17 Oct 2011 11:19 am

An update after my visit to see the consultant today,

The eye department have admitted that my right eye is no longer suitable for contacts, and are going to perform a partial Corneal graft, the very same operation they refused to do as i was too young!

Although the thought of having this done fills me with fear, i am sure there are many others out there who have come through with great results.

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Andrew MacLean
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Posts: 7707
Joined: Thu 15 Jan 2004 8:01 pm
Keratoconus: Yes, I have KC
Vision: Other
Location: Scotland

Re: Hello and Help!

Postby Andrew MacLean » Mon 17 Oct 2011 3:20 pm

It is natural to be apprehensive when contemplating surgery. If your results are as good as mine you will never regret having had the surgery.

Two things: do not be too impatient after surgery. It takes a long time for the graft to settle.
Do follow all the advice you are given: avoid strain, use your meds and take care of your new cornea.

Every good wish.

Andrew
Andrew MacLean

djs1972
Contributor
Contributor
Posts: 23
Joined: Wed 05 Oct 2011 6:08 pm
Keratoconus: Yes, I have KC
Vision: Contact lenses

Re: Hello and Help!

Postby djs1972 » Mon 17 Oct 2011 6:27 pm

thanks for the reply, its going to be a long haul, but worth it in the end.

DAWNANN
Contributor
Contributor
Posts: 10
Joined: Wed 09 Mar 2011 6:35 pm
Keratoconus: Yes, I have KC
Vision: On the waiting list for a graft

Re: Hello and Help!

Postby DAWNANN » Mon 21 Nov 2011 9:29 am

Hello, Im 46 and had a full thickness graft in June this year. I was frightened but now realise there was no need.Had mine at Moorfields the surgeons were great. Thanks to Mr Larkin I can now see very well with my left eye. Had my continual stitch out 4 weeks ago and replaced with individual ones as I cheesewired mine and they were worried about the graft loosening. Every day I open my eye to check I can still see and I look in the mirror to check its not red. I guess I always will but I will never regret having it done. Good luck and let me know how you get on Dawn.

djs1972
Contributor
Contributor
Posts: 23
Joined: Wed 05 Oct 2011 6:08 pm
Keratoconus: Yes, I have KC
Vision: Contact lenses

Re: Hello and Help!

Postby djs1972 » Tue 03 Jan 2012 6:30 am

Thanks Dawn, and good to hear you are getting on well, i have only 2 weeks to wait now, at the moment i am more worried about being in hospital overnight than anything else! my biggest issue will be learning to be patient and not expect miracles overnight......

ruralrob
Contributor
Contributor
Posts: 49
Joined: Wed 24 Sep 2008 12:06 am
Keratoconus: Yes, I have KC
Vision: Graft(s) and contact lenses

Re: Hello and Help!

Postby ruralrob » Wed 04 Jan 2012 7:54 am

HI djs1972

best of luck with your graft in a couple of weeks time .I had mine nearly 3 weeks ago and was very anxious before ,but can honestly say it wasnt half as bad as I was expecting .I was lucky I didnt have to stay in overnight .I went down to theater at 10.15 as was back home at 2.00 pm and even posted a message on this site later in the day !!

I too am a very impatient person ,but have accepted its going to be a long process in healing etc I think its just a matter of taking all precautions and follow any advise given and remembering to take drops as required .

I was amazed when they took the bandage off the following day and I could allready see a little out of the eye ,sure its not great and I certanly would not be able to drive as it is ,but its a start and hopfully will improve in time with correction with contact lens or (hopfully ) glasses.Thankfully I have good site in my right eye .


Anyway best of luck once again ,let us know how you get on


Take care


Rob


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