Terrified... advice please!!

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

Carli1987
Newbie
Newbie
Posts: 1
Joined: Tue 27 Jan 2015 9:35 am
Keratoconus: Yes, I have KC
Vision: Contact lenses

Terrified... advice please!!

Postby Carli1987 » Tue 27 Jan 2015 11:50 am

Hi everybody

Just wanted to introduce myself... Apologies for the slightly dramatic subject line! New to this forum and wanted to tap into your combined wealth of experience and advice...

Just a bit of background on my situation. Was diagnosed with KC about 14 years ago, aged 13. My right eye was quite affected but my left eye had very mild KC so my vision was fairly good. However, my right eye couldn’t be corrected with glasses or soft contacts, so I persevered with gas permeable lenses for a couple of years during my teens, on and off. I suppose I didn’t really appreciate the prognosis of implications of this disease- I was teenager and I could see fine without my contact lenses so I had little incentive to keep trying with them. After a few years at around 16 I eventually gave up, and I’m very ashamed to say I didn’t really think about my KC for the next 10 years! I wore my glasses most of the time, visited the opticians for them so figured if anything serious came up they would know, and although I guess I was vaguely aware my right eye sight was getting slightly worse, and I had terrible night vision – halos and ‘ghosting’, I just sort of accepted it..

I only started thinking about my KC again about a year ago when I having a medical for my second year visa in New Zealand. The doctor tested my eyes and my right eye’s vision was at 20/200 – pretty ridiculous. I couldn’t even see the screen, let alone the letters. The doctor was astounded I wasn’t having treatment for my KC- which obviously made me feel so stupid and irresponsible for going so many years without seeing a specialist. But as I say, given I can see fine, obviously not perfect, but fine, it was just never something I gave much thought to. And I suppose as time went on and I was still fine, I just thought it must have stabilised. Anyway, fast forward 6 months, I was back in the UK and asking for a referral back to the eye clinic.

I had my second consultation yesterday (the first was just a confirmation of what I already knew- that I had kerataconus and needed to see a corneal specialist!) and it was so much more distressing than I was anticipated! I went along expecting to be fitted with new contact lenses, instead I was told my right eye is now ‘advanced KC’, has corneal scarring and stretching, and is most likely too advanced for contact lenses to work. The consultant also added that it was almost too advanced for corneal cross linking, but I was still eligible so she’d put me forward straight away. After that, we’d need to look at possible corneal rings to correct my right vision. Luckily, my left is still only mildly affected, even after 14 years.

Obviously, I’m really upset with myself for letting so much time go by without really doing anything. I’m also so scared for the future now- I understood that corneal transplants were only needed in 20% of cases? But it’s the not knowing that is so concerning- will I need a transplant? Will my left eye ever deteriorate? What if the corneal cross linking doesn’t work? What if a transplant didn’t work? Just so many questions! And my main concern is, if a transplant failed, would I go blind?? Has anyone ever gone blind from KC??

Apologies for the rambling dictation of my thought process, but am pretty terrified at all this new information and despite trawling the internet for information, I’d love some advice from fellow KC-sufferers who’ve been through it themselves.

Thank you!!

Carli xxx

User avatar
Anne Klepacz
Committee
Committee
Posts: 2009
Joined: Sat 20 Mar 2004 5:46 pm
Keratoconus: Yes, I have KC
Vision: Graft(s) and contact lenses

Re: Terrified... advice please!!

Postby Anne Klepacz » Tue 27 Jan 2015 2:49 pm

Hi Carli and welcome!
So many questions, so where to start? Maybe to reassure you, as someone who has had transplants in both eyes, that having a transplant isn't the end of the world! And from what you say, you're not at that stage and may well never be. It's encouraging that your right eye is still eligible for crosslinking which should stabilise that eye. Then, as your consultant said, corneal rings might well improve the vision. And I wouldn't discount the possibility of contact lenses. Surgeons tend to talk about surgery, but hospital optometrists can sometimes do wonders in fitting seemingly impossible eyes and the range of contact lenses (different shapes, sizes and materials) has expanded hugely in the last 10 years.
It's great that your left eye has stayed mild and stable all these years, and the chances are that it will stay that way. And if it should start to change, you would then have the option of crosslinking in that eye to prevent any further progression.
It is extremely rare for anyone to go blind with KC - I think it could only really happen if both eyes were very advanced and if there were multiple rejections of the transplants in both eyes. Though some people whose KC progresses to the point of needing a transplant might well be 'legally' blind in that eye for a while - ie have sight that is bad enough for registration as blind or partially sighted.
And don't beat yourself up too much about ignoring your KC. It is usually a 'slow burning' condition, and most people with KC have a good or better eye that they can rely on, so it's easy not to notice the deterioration in the other eye. And crosslinking hasn't been around for long in the UK, so while having that done a year or two earlier might have saved you a bit of anxiety and panic, you haven't done yourself any major harm by burying your head in the sand!
If you e-mail your postal address to anne@keratoconus-group.org.uk I can send you our information booklet about keratoconus which goes into all the options, plus a DVD of our 2013 conference which included a very good talk about all the different contact lenses now available for KC.
I'm glad you've found our forum - there are lots of us here who have had all sorts of KC journeys over the years so you're not alone!
All the best
Anne

tasteofhypocrisy
Newbie
Newbie
Posts: 3
Joined: Fri 23 Jan 2015 7:07 am

Re: Terrified... advice please!!

Postby tasteofhypocrisy » Wed 28 Jan 2015 7:32 am

Hello Anne,

I was wondering if you can share the soft copy of that document you promised to Carri about the possible lens options for KC. Or otherwise would it be possible to send the hard copy to Munich Germany I would be really thankful to you. I have undergone CXL one month ago and developed ghosting after the op. My left eye which was the good eye had a very mild KC and i had a fairly good vision with that. I was relying on my left eye all the time. After bilateral CXL my left eye (the good eye) has developed ghosting which is pretty disturbing and affecting my life because of the dizziness and headaches. I want to get your advice on what lens options can I possibly have because I have never tried a lens all my life. Also, the doc thinks that I should wait until 3 months post op before going for correction glasses or lens. Any help from you would be much appreciated.

Thanks!

User avatar
Anne Klepacz
Committee
Committee
Posts: 2009
Joined: Sat 20 Mar 2004 5:46 pm
Keratoconus: Yes, I have KC
Vision: Graft(s) and contact lenses

Re: Terrified... advice please!!

Postby Anne Klepacz » Wed 28 Jan 2015 9:27 am

Yes, I think 3 months post CXL is fairly standard for glasses or contact lenses post CXL. I'll e-mail you about the contact lens talk.


Return to “General Discussion Forum”

Who is online

Users browsing this forum: No registered users and 15 guests