11 years and still KC in only one eye?

[keratocop]

Hi all. Im new to the forum and i just want to say that i have had KC since i was 20. The good news is that i only have it in my right eye. Im 31 years old now, and had PRK surgery performed at 25 to be a police officer and to this day my vision is 20/20 uncorrected in my left eye and 20/35 uncorrected in my right corrected to 20/20..ish with a soft toric(with ghosting). I have looked online at the stats and usually KC affects both eyes in 80% of people. The disease usually occurs in the first eye then after a couple years, advances to the second eye. Can it be safer to say that my eyes might have stabilized and the KC might not progress into the left eye? Does anyone else have KC in 1 eye or know if KC advances to the other eye 10-15 years later?
I would love any feedback!
thanks.
Jer

[Lizb]

Bad news, I was also diagnosed about the age of 20 with KC in my left eye, progressively got worse over the years - I was diagnosed with KC in my right eye last year. I also turn 31 this year and am looking at CXL/intacs as a possible treatment in the near future as i am not getting on with CL at all.

[keratocop]

so liz..your KC was progressing since 20 or did it stabilize?... in the non KC eye, was your vision perfect then you woke up one day and noticed it distored?
The KC advanced in My eye for 3 months when i was 20 then stabilized. The only other time it progressed was at 25 after i had PRK surgery. The eye got irritated then went from 20/20 to 20/35 in a couple weeks and that has been it since. Thanks Liz for you quick response!

[keratocop]

couple more questions. Has anyone had the c3r procedure done in the non-kc eye to prevent KC from even starting there? My second question is if i get intacs in my KC eye, will it help in removing the ghosting that has been irritating me for years?

[Andrew MacLean]

keratocop

Welcome to the forum

I'm afraid I've not had C3R, so can't offer any advice based on experience. I can confirm that for most people with keratoconus the condition does not progress to the place where surgery is necessary. That said, I can also confirm that it can keep progressing beyond the age 31.

I had my first graft at 52!

Andrew

[Lizb]

In answer to your question Keratocop, I dont know how much my left eye has progressed in the last couple of years. I will give some more history to explain.

- At approx 13-14 I was told i needed to wear glasses to correct short-sightedness, not required all the time just occasionally.
- At approx 15 my optician was very concerned that the sight in my left eye had dramatically reduced but couldnt find a cause, even after trying most tests - was concerned as there is a family history of glaucoma (sp?)
- At 17 told definantly wear glasses for driving and if using computer/watching tv. Otherwise could manage without - or at least a very vain 17 year old did .
- At 20 told my optician that she thought i had KC in left eye, and got a referral upto the local eye clinic at the hospital
- Consultant confirmed that i had KC (age 21) and explained it to me, started trying CL, but only in one eye (so still needed glasses for right eye) and they were RGP. Me trying to get on with CL was nigh on impossible and as i was managing with glasses i didnt try particulary hard. Eyes still prone to ichtyness and could barely touch my eyelid let alone keep my eyes open to put a CL in that then hurt. Kept trying CL and was seen every 9-12 months to check on progression. Was by this time weaning glasses all the time except when out in town, life very blurred without glasses
- 5 years ago I moved 70miles north for a new job and got a new referral to a more local hospital. This hospital outsources CL fitting for KC to an independant optician, who i also see for my general check ups annually. Glasses prescription changing substantially on an annual basis.
- tried CL, RPG/piggy backing etc but still couldnt tolerate CL in for more than 1 hour, though was given CL for both eyes so i could see the benefit in CL just couldnt tolerate them. Gave up on CL and managed with glasses 4 years ago. Still saw a doctor in the local hospital every 12-15 months (depending on the number of cancellation letters i got) who took topographies each time. I never really bothered with what the rate of progression was, I could manage with glasses and my right eye did all the work
- 3-4 years ago optician on general check up told me it was pointless having a prescription in the left lens of my glasses as i would just be walking into things constantly so went onto a balance lens for the left and prescription with the right - small changes each year.
- started to get fed up with glasses when out on the motorbike 2 years ago, so looked into the options for KC to see what had developed over time, and spoke to a useless registrar (no ideas about intacs or the developing option of CXL) so ended up back with my CL fitter who said that she had a new type of lens to her that may work for me. This was synergise lenses. got fitted with them, and converted to preservative free solutions, which worked and i was able to wear lenses for 5-7 hours a day in work and 9-12 out of work. Great i thought, can manage this.
- Last October/November i had a number of problems with my right eye - yep the one that does work and i thought the one without KC - and ended up at the local eye causulty. Doc who saw me turned round and said something about the KC in my right eye must have progressed and the CL must have been rubbing it - my response was what KC? Got me an appointment a week later in clinic and had it confirmed. It had been on the previous topography but no-one thought to tell me about it.
I thought i had been lucky in only getting KC in the one eye until last autumn as well

From my story above my belief is that my KC in the left eye has progressed continually since diagnosis, but i need confirmation (next time i get to the hospital and they dont cancell my appointment again I hope) as to the rate of progression since 2004 (only had electronic topographys done regularly at my current hospital), and also the rate of progression in my right eye since it has been showing up. ]
I believe that the KC in my right eye has been there for a couple of years now, but I have been able to cope/manage with glasses - everyone just believing my vision was deteriorating.
I also suspect that i started with KC in my left eye at an earlier age but the optician didnt know what was wrong whilst i was a teenager. The opticians i went to as a child/teenager was the same one as where my KC got picked up but i got seen by the new girl to the practice who had previously worked at Birmingham Eye Hospital so was aware of the condition. I suspect it wasnt something the previous optician had ever seen, or didnt know what it was.

If you got to the end well done, I apologise didnt realise quite how much i had written but i hope that answers some questions.

[keratocop]

Hey Liz,
I read the whole post lol. thank you for your story, though we are a little different in the KC ways. I guess i can tell if im getting KC because my eyes are 20/20 uncorrected so if there is a problem i would be able to notice it. I keep trying to tell myself that maybe i was misdiagnosed or that maybe i was a lucky one and only got it in one eye, but i guess thats more of a wishful thinking. I go for police training next month so as long as my eyes hold up till im done the training in september than i should be ok(Police want no more than 20/40 uncorrected). Im going to keep holding onto hope that i wont advance anymore because thats the only thing i have to hold onto right now. I keep wondering why me since the odds are 1 in 2000 do get this dam disease.
Thanks Andrew for your input as well. I might not look into intacs until i get worse. How long have you had KC for?
Jer

[Lizb]

My husband actually gets the whole why did it happen to me, my stupid eyes dont work, am fed up with the problems caused by CL, am fed up with the hospital cancelling appointments rants that i go through.

I am currently considering CXL/INtacs as i am currently not able to wear CL for more than 1hour a day and even then have problems for 2-3 days after Am sick of the sight of my opticians at the moment.

[keratocop]

sorry liz, another question. So having this surgery cxl(c3r) surgery and then putting intacs in afterward, that will correct your vision? Ive heard of people getting clk then getting prk, is there a difference in your opinion?

[Lizb]

As i understand it CXL and intacs will not correct my vision but hopefully with slow the progression of the KC in my right eye and make it easier to get CLs to fit.

If i can slow (halt if i am allowed to dream) the progression of KC in my right eye, then i know that i will nearly always be able to drive/ride (am still at driving standards most of the time) in glasses.

I am not totally clear what the PRK is, still havent established that yet. Hopefully someone else can answer that for us both.