need some hope...

[timtim]

Does anybody have a story where they were struggling with KC, and then they got either new lenses or surgery and it really helped them a lot? I have had a difficult time. I just have a tough time focusing a lot, makes me feel mentally out of it. But, I am only wearing soft lenses, and am going to the opthamologist next week to start trying new things. Even just to know that a change could make a big difference to how I feel would be a huge motivating factor. Thanks

[Karl R]

Hi timtim and welcome to the forums.

Hope this brief synopsis helps a bit.

Diagnosed KC Nov 2005, transferred from local eye unit to St Paul's in Liverpool Jan 2006. Intolerable to contact lenses so had to make do with my specs, but eyesight too poor to drive so had to stop working. Vision in right eye gradually got worse. Consultant mentioned INTACS January 2006, spent 13 months waiting for funding to be approved.

Surgery February 2007, 1 week of hell thanks to an infection, 6 weeks of discomfort whilst waiting for stitch to be taken out.

Aided vision now 6/5 in both eyes, still wearing specs but not bothered about that. About to start new job.

So, for me at least, the 13 months of having to wait was worth it, even if at times it seemed never ending. Like all things KC it takes time. Time to find the correct fit for contacts, time waiting for surgery if needed and time recovering post op.

As I have said to others; don't let KC run your life, let your life run your KC.

[Sweet]

TimTim,

Hey there! I have never had sight in my left eye so after 14 years of waiting decided to go for surgery. I now have 6/18 vision in this eye with a contact lens when I couldn't see the light box before and with both eyes I have 6/6 vision with lenses

Hang on in there you are doing so well. It does unfortunately take such a long time but I think we appreciate it so much more when we get to the end and have a good outcome!!

Love Sweet X x X

[GarethB]

Diagnosed in 1987, KC was very agressive, did A levels partially sighted in 1988 then had first graft in right eye. Started uni recoving from garft, end first year exams graft in left eye (1989).

Back then there were few lens options so some of us exhausted those options very quickly.

By end second year in Uni vision was very good in both eyey corrected so did a year working for the government.

Eventually went many years without any vision correction.

2004 KC returned to right eye, back on RGP corneal lenses and the technology used to make them has moved on leaps and bounds since first diagnoses. KC been stable now for 3 years.

Was told never be able to wear glasses again, well I get good enough vision with glasses to drive and soon to have right lens boosted to full strength so I should be able to get my motorsport licence back.

KC changed my life, I am a load more stronger having gone through the bad spells, I have prooved to my self and others that the only thing I can not do safely is drive without vision correction. So far I have managed to do everything else.

I have the same view as Karl regarding not letting KC rule your life in that i believe it is only a disability if you allow it to become one.

[donna]

I was diagnosed at the end of last year and within 3 months the KC had progressed rapidly in my left eye and was starting in my right eye. I was refered to hospital and told that I could no longer get by with glasses and was sent to an optician who specialises in fitting lenses to people with KC. What a difference now! My lenses are fab and after 8 weeks on the sick I returned to work this week. I had to make some slight changes but am managing fine, I get good wear time ... 10-14 hours! Without any problems

[timtim]

oh wow, thats great news Donna! I hope that I am able to get that sort of relief out a different kind of contacts. My next step is finding a doctor who is really good at fitting for KC. Thanks to everyone else too. It's nice to hear that there is hope (even though it may take quite a bit of patience).

[John Smith]

TimTim,

Have you had a look at our optoms list available at http://www.keratoconus-group.org.uk/optoms ?

Hopefully, you'll find someone near you.

[donna]

The lenses I have are Rose K, I have had no problems with them other than my right eye needed a new lens cos it was not as comfy as the left..........I couldnt feel the lens in the left eye!
I am only aware of my lenses now if I am tired or get something in my eye.
Good luck

[Eddie S]

Hi Tim,

I think/hope you'll be pleasantly surprised after being fitted with hard lenses.

One of the ways they work is to shape/mold the cornea back into a more natural eliptical shape - something glasses or soft lenses just cant do.

Although I've had problems recently with them (dry eyes rather than my KC) I've had around 16 good years out of them and many of us here have been wearing them for a lot longer.

Yet. after a standard eye test yesterday I realised how much I'd struggle if I was in just specs or soft lenses.

With hard lenses I'm legal to drive and dont feel i've missed out on anything thanks to them.

Let us know how you get on. I'm waiting in eagerness for you to say "Wow!"

Good luck

Ed

[timtim]

Great encouragement guys! I really can't wait to try them. I took a look at the list of opthamologists, but the only problem is that I live in the US (in Jacksonville, Florida). I'll have to look and see if I can find a list of lens fitters here. That would be a big help. I'll be sure to update everyone once I try hard lenses